Barbara appointed Rural Support CoOrdinator for Dorset

Barbara is first Dorset Rural Support CoOrdinator: I was diagnosed with a Pituitary tumour nearly 20 years ago. Although my problems started many years prior to the diagnosis, it was not until I was 40 years of age, that I finally had an answer to my problems. I was 32 years of age when I first saw my GP with my vague symptoms, like my periods going from heavy 6 day periods, to a scanty half a day, to having body flushes, tiredness and a few other problems. I spent the next few years talking to the GP to no avail. I was told by him it was either ‘it’s all in your mind’ or ‘you must be in an early menopause’. But no help was offered. After more or less demanding to see a Consultant, I eventually saw one in Haslar Royal Naval Hospital, Gosport. The Surgeon Commander ordered numerous blood tests and when I received the results he told me I was deplete in most of my main hormones. He told me I was almost certainly sterile, due to the severe problems with my hormones. This didn’t bother me as I had a lovely son and a daughter. But you know how it is when fate deals you a different hand to the one you think you should have. Because low and behold I became pregnant a month later. To say this was against the odds is an understatement. I was told being pregnant was a million to one chance, but not only because of my hormones but because I under went a D & C operation 3 months later as part of my assessment, not knowing I was 6 weeks pregnant. I now have a 6’ 3” bouncing baby 22 year old boy, (only don’t tell him I said that!!) to prove miracles do happen. When the surgeon discovered I was pregnant he said “that’s the answer to your problems, you’ll make the right hormones now”, which I did for about two and half years, then came the next lot of symptoms, milk in my breasts, weight problems, despite playing regular sport such as squash and eating a sensible diet. I had those awful body flushes again, burning all over, which I still get to this day. After convincing my reluctant GP to get help for me, I arrived at Poole Hospital to see a Consultant Endocrinologist. I’d never heard of an Endocrinologist before, but I sure came to know that name and certainly not to love it. I didn’t know it then, that I would have to become very knowledgeable in the field of Endocrinology, getting self help for my condition when the medical world failed me. After numerous blood tests and a CT Scan I was diagnosed with a Prolactinoma. The medication I was given did not work, I had really bad side effects. So the Endocrinologist glibly told me I would need surgery to remove the small benign Prolactinoma tumour, which had been found on my Pituitary Gland. Some weeks later I arrived at the Neurosurgical Outpatients Department at Southampton General Hospital. I remember sitting in front of the Consultant sort of like a zombie, listening to him but not really taking in what he was saying. All I remember him saying is “this is the simplest form of brain surgery I do. You will be in hospital for 7-10 days and be a new woman in 10 weeks, back to your old self”. The only trouble with that was no one told my brain and body that it was the simplest form of surgery, when the complications set in. But with that in mind of how I was going to return to my slim, bubbly old self, I went home. I returned four weeks later for the surgery. I won’t go into too many details of what turned out for me needing the two Transphynoidal operations. I had complications both during and after both surgeries. After a total of over 2 months on the ward, I was told I would soon be better, what a lie! The Diabetes Insipidus which started on the night of the first operation did stop 6 months later, but the weight I had gained, something like 5 stone during my time on the ward, did not fall off me as promised, once I stopped taking Prednisilone tablets. I’m sure thousands of Pituitary patients will confirm they have a similar problem. It took me almost 2 years to start to feel nearly normal again. I was discharged from Southampton only a year after my ops and told I would never need to see anyone again. I wasn’t happy with that, so I asked my GP if I could be transferred to The John Radcliffe Hospital, Oxford. I was admitted to their Endocrine ward a few months later. When my notes arrived at the hospital, the surgical as well as the medical, the Consultant read them and backed off so fast, he almost ran out of the ward and I was sent home. This was a scenario I came to know so well. A hospital would agree to see me, for a second opinion and then back off once they read my notes. I never did read those notes, but how wish I’d had some sort of power in those days to have made Southampton General to hand over all of the notes for me to read. I may have found out why I had been so ill and what had gone wrong. But going back 20 years ago patients did not have the right to their notes, in the way they do now. Some time after that I was involved in a car crash, when some idiot crashed into the car behind me and I became ‘piggy in the middle’ in a 5 car pile up. I was knocked unconscious and received other injuries. Within six months I knew something other than the physical injuries was causing problems for me. I could not explain it properly, even now I can’t recall what it was I felt, call it a gut feeling. Eventually I asked my GP (I had changed GP’s yet again) if he would send me to see another Endocrinologist. By this time, it was 10 years after my operations and now an Endocrinologist was actually working full time in Bournemouth General Hospital. I began to think ‘what is wrong with me’ as yet once again I came up against a Consultant who was so indifferent to me and my problems, I wondered why I was there and why she was a doctor. I had become quite knowledgeable in my medical problems as most Pituitary patients do and I asked if various tests to be done, which did not go down too well. After having some of the tests done, back came the answer, that there nothing wrong with me. I was being discharged from yet another hospital with these words said in the most sanctimonious way, “All your tests are within the normal range, so I suggest you get yourself out of the house for 10 minutes a day, go for a little walk and stop thinking about yourself”. I had taken a friend along with me that day because I knew the way this doctor had spoken to me before and I wanted someone to believe me that it wasn’t me who did not get on with doctors, but that some doctors did not get on with their patients. After that I tried to see a Consultant in the Bristol Royal Infirmary. But the previous Consultant had written to him, presumably to tell him it was ‘all in my mind’, as I wasn’t with him for 5 minutes before he said “I don’t think I can do anything for you, which your previous Consultant hasn’t already done”. Goodbye!! So once again I left. My friend Eileen and I got used to travelling the countryside going from one Endocrinologist or another. I can tell you we saw some pretty countryside and we ate in some rather nice restaurants. A good day out was had by us, apart from seeing yet another uncaring doctor. I can joke, but I was gutted, as I felt let down by the so called ‘Caring Profession’. If it wasn’t for now having the most caring GP in Dr Nelms, I don’t think I could have gone on, I was getting so low and depressed. Then I then read an article in a magazine about the Pituitary Tumour Network Association, (PTNA) which was in the USA and my life changed. Robert Knutzen started the PTNA newsletter because he had been a patient who had also gone through similar problems to what I had gone through. He found there was little or no information in the USA on Pituitary diseases, so as he had the resources and the facilities, he set up his own network, to try and find more information and cures, for our complex and complication illnesses/diseases. I wrote to Robert at the PTNA, (now the Pituitary Tumour Association) and Robert wrote back to me almost by return of post. Unbeknown to me Robert faxed a copy of my letter, which believe me was long – 6 pages – (but I hasten to add, not as long as the letter I wrote to Gail a founder member of PitPat, bless her I made her suffer 12 pages of my story, when I discovered the Pituitary Foundation). But I digress. Robert faxed the letter to Professor Besser at St Bartholomew’s Hospital, London. Within days I had a phone call from Professor Besser telling me he had received a copy of my letter and could I tell him who was my attending Consultant Endocrinologist? I told him I did not have one and had been discharged from hospital. His words to me were something like “don’t be silly woman a Pituitary patient never gets discharged from their hospital”. I remember getting quite angry and saying “Excuse me but I really have been discharged and from three other hospitals”. I told the Professor I was not seeing any Endocrinologist. Professor Besser sort of gasped, well that’s what it sounded like, perhaps it was more like a grunt, I think he was amazed. He told me to tell my GP to write to him requesting an appointment. Well, you can imagine how my GP must have felt. He had received numerous letters off Consultants telling him I’m sure, that all [Barbara’s] medical problems were in her mind. Dr Nelms wasn’t keen to send me to see Professor Besser, as I’m sure he thought I could not take being rejected again, being told there was nothing wrong with me. I promised Dr Nelms I would never ask to see another Endocrinologist again, if this one said the same thing as the others. Dr Nelms reluctantly wrote the letter and I went to see the Prof. He had me admitted to Bart’s for two weeks of thorough tests. At the end of that time the Prof came to my room and told me that not only were my Adrenal Glands failing, which as all Endocrine patients know is really quite serous, but I was almost devoid of any Growth Hormone in my body and a few other minor problems to boot. At last I had the proof of my illness/diseases whatever you like to call them and it wasn’t ‘all in my mind’, I was not going mad, I had not been imagined any of my symptoms and I was now going to get the help I needed. When I returned home I went to see my Dr Nelms, I told him the outcome of the tests and handed him a letter from the Prof, informing of my medication, Hydrocortisone, which I would need to take for the rest of my life, along with Growth Hormone injections. It was very difficult to get permission to go onto GH injections 6 years ago, but nevertheless Dr Nelms and St Bart’s put forward a very good case for me and Dorset Health Authority gave permission for me to go on the injections, which was great. Dr Nelms told me he was pleased I had more or less badgered him into sending me to Bart’s. He said he hadn’t really believed they could do anything for me, which Bournemouth and all the other hospitals had failed to do, find the cause of my problems. All I know is how lucky I am Professor Besser was on the Board of Directors for the PTA, in the USA. Without his intervention and Dr Nelms believing in me, I do not think I would be alive today. Also having someone like Gail in the Pituitary Foundation who was also willing to listen to my very long list of moans and help me. Now we have ‘Telephone Buddies’ who do the same job as Gail did for me, be a listening ear. It’s now over 6 years since I first went to St Bart’s and I live to tell the tale. One thing I did learn is having a Pituitary Disease is hard enough to cope with, without having to fight battles with the medical profession to get the treatment we need, it is a battle we should not have to fight. But now we have the wonderful professional backing of the Pituitary Foundation. It is so much easier to get help in understanding your complex and complicated medical illness from their very informative leaflets/booklets/CD Roms etc. which are given free to anyone who applies for them. There are many helpers who belong to PitPat who are at the end of a phone line, willing to listen to your problems. Not to tell you what to do, but to listen and empathise with you, because one of us will have had similar problems. We will never tell anyone what they should do. The trouble with many doctors is they see us, but often they do not actually hear what we say. They presume to know what we might have said. Has anyone walked into a surgery only for the doctor to seem to be writing out the prescription before you have finished telling him what is wrong with you? The doctor will presume to know what you have gone to see him for, but often hey don’t actually know, because they haven’t listened to what you have said. I am so lucky because I think I belong to the best medical centre I have ever come across. My friends assure this is a rare commodity, for not only does my GP Dr Nelms listen to what I have to say, (even though the poor man sees me so often), but he really makes me feel he does listen to me. And as for the rest of the staff in the medical centre, they are all caring medical professionals. From the GP’s, to the nurses, receptionists and other staff, believe me I do know how lucky I am to belong to such a caring practise. It took me 25 years to find this practise and I have told them, even if I win the lottery they still won’t get rid of me. No Way!! I will still stay with them even when I’m a millionairess, there’s no getting rid of me and you should have seen their faces, only kidding. They love me – really!! I’m glued to that seat in the waiting room they’ll have to saw the legs off the chair to get me out. One final thing I must say. At the end of my stay in the Neurosurgical Ward in Southampton, one of the Registrar’s said to me “You know Babs, if it hadn’t been for your Northern grit and your Liverpudlian sense of humour, I don’t think you would have survived” and I agreed with him. No matter how hard life gets and it gets pretty hard at times as a Pituitary patient, especially when no one believes you, always somewhere deep down, keep your sense of humour, even the sense of the ridiculous. Find the grit and determination to fight in your corner, for your cause and keep a smile on your face and laughter in your heart. I know how tough life can be, but face the world with a laugh and cry in private. Look after yourselves and keep smiling. Copyright Barbara of Dorset 2004 NB: The Pituitary Foundation's national network of Local Support Groups is managed by volunteer lead roles called Area Co-ordinators (ACs). Barbara is the first AC for Dorset and works to support patients and carers directly within the Dorset area. _______________________________ The Pituitary Foundation (UK)

Message from National Awareness Manager: Jan Packer

Teenage Site

Unfortunately, the USA Teenager Site for those suffering from serious illness seems to have been closed down.
I will investigate to see if the URL has merely moved or if another site has taken over this important role.
Peter Randle
1st May 2008
___________________________________
Dear Teenager



You are not forgotten - why not visit this site to find out more about your body parts as a start to finding out more about how you feel and why!



Peter
___
Disclaimer from suggested site:
Bodyteen.com provides valuable medically accurate information. It does not replace the advice of a medical professional. Although we strongly believe the information within this site can help you take better care of yourself and improve your life, Bodyteen.com is not responsible for actions you take based on any information within this web site. Always consult a physician before starting any type of program that effects your body. Bodyteen.com does contain mature content. We feel that you are entitled to this information as it is directly related to your health and your body. The graphics make the learning process more entertaining, stimulate conversation, and help clarify information on important topics concerning your life. We encourage you to discuss these topics with your parents, and we encourage parent to use the site to discuss topics with their teenage sons and daughters. Sincerely, Bodyteen.com

Hampshire Newsletters 1 to 4 - Nick Allen

Newsletter One - 2002 Hello friends, Nick here. As a computer engineer and hearing that Maggie had problems with her computer, I thought I would have a chat with her to see if there was anything I could do, and here it is, my first attempt at piecing together articles for a Newsletter. Sitting down to put something together for this Newsletter I just dared my computer to play me up, it dared, and had a hard drive failure. Thinking that I know a little bit about computers I threatened it with unimaginable violence, still no joy, and since I am working 120 miles away from where I live, sorting this Newsletter out has been a bit of an epic, and then my car was stolen whilst I was in Bristol. What I am clumsily trying to say is: if you notice a distinct lack of the old Irish Blarney about this and future Newsletters, it is because Maggie has decided to take a well-earned rest and has passed the production of your newsletter over to me. Thanks, Maggie, for giving us such an entertaining, informative and irreverent (!) newsletter to look forward to – you’re going to be a very hard act to follow. Hi to you all. Gail here, winter fast approaching and I’d like to welcome you to Nick’s first Newsletter, which has in actual fact, been produced under difficult circumstances. I’ll let him explain but thank you Nick for not giving up in the face of adversity. I think that little gem can be said of how pituitary patients in general, deal with their conditions, don’t you? On to business then – we held a very informal style AGM in October, which was well attended. I wonder if that had anything to do with our guest speaker Dr Derek Sandeman coming along to take us through a very interesting and amusing Question & Answer session. This ranged through subjects including weight gain, mood swings, oestrogen & testosterone replacement and also quite a lot on Cushings symptoms. The latter was of great interest to Chris and her husband who we hadn’t seen since meeting at QA and also a new member Julian, who is awaiting a definite diagnosis. It was good to welcome them and I would reiterate to them, as I do to you all, if you are feeling frustrated because of no answers, or just want a chat to get your head round it all, the group is here to help. Come along to a meeting or phone one of us, we’ve enough experience now to direct you down a perhaps as yet unconsidered, Pituitary ‘route’. Everyone was very enamoured with Dr Sandeman and we will certainly be inviting him back. I owe Howard (Pearce) an apology ‘cos I got it all wrong and I’m very pleased to say that he is not stepping down as Chairman. Thank you Howard for a) staying on-board the committee and b) not giving me a good telling off !! However, Pete has, as you know, had to give up the role of Joint Area Co-ordinator because his doctor has told him to take things a little easier. As a thank you, we presented Pete with a pewter Steam Train ornament very attractively displayed on a wooden base, which our very own Brian Avery had made for him. Don’t worry though; we will still be seeing plenty of Pete. Even though I put out a sincere plea for a new Joint AC in the last Newsletter, the ‘silence is golden’ that I quoted, has been just that …………… total silence. This isn’t good enough folks and I need help. If you are out there wondering what the role involves but think that someone else will step forward, please phone me for a chat (01428 707003 or 01428 651526). There are Guidelines and a very experienced Committee to support you. It’s fun and there are also excellent informal training events to aid you as an Area Co-ordinator. One cold but very sunny Saturday morning in October, six of us gathered outside ‘Toys R Us’ in Southsea with a huge Dignity charity fairground organ organised by Pete. We strategically placed ourselves at the entrance & exit with our collection buckets and poster board to advertise the Pituitary Foundation. We also took along 2 Labradors who stole the show and helped raise £245.26 plus 1 whole Franc! To be honest, with Tarka & Tanker (the dogs) sporting t-shirts showing the PitPat logo, lots of people initially thought we were a dog-related charity. Money under false pretences? No, we all did lots of explaining as to what the Pituitary Foundation is all about and grandparents, parents, children, all, were very generous indeed. It was a fun day and the dogs certainly appreciated all the pats, tummy tickling and tidbits. Thanks for organising this Pete and Janet. Lastly from me, is to say that the next get-together is for our Xmas ‘bash’ back at Cosham Community Centre on Wednesday 4th December at 7pm. There will be a short talk & photos from our intrepid sailors (Tony, Jan & Catriona) who braved the Jubilee Sailing Trust trip in September, which was funded by your group. We will also hold a couple of quizzes, a raffle and offer you Xmas fine fayre. Prizes and edibles very welcome please. There is also a bar for those who like to imbibe a drink or two. See you there, or be…. PS - Apparently rumours abound that I am doing a runner and going down to Bristol to work. Whoa...... this isn't the case my friends, let me explain the situation. I have worked part-time for The Pituitary Foundation (3 days a week) for several years now and I am pleased to advise that we have been successful in the application for further Lottery funding (now named Community Fund). This is to begin an Early Awareness Project in the New Year, which you will hear all about in Pituitary News. This funding can now enable me to work full-time for the Foundation but this is home based as it has always been. So, I'm still in deepest Sussex but not Hampshire - need I say more!! Peter Barker writes: I wish to thank the committee for their lovely present I received on my retirement as Area Co-ordinator, but alas you have not got rid of me just yet. I have taken on the position of Deputy Chairman and Local Liaison Officer until a new Area Co-ordinator is found so we need someone out there to come forward. We really need someone who lives in the Portsmouth area. It might be someone who does not come to our group meetings and has time on their hands also to bring in new ideas that will help you and support you. Our Gail will be glad to help all she can and give you her support so come onboard, we need you. I hope to see you all at the Christmas Party on Wednesday 4th December 02 at the Cosham Community Centre, Wootton Street Cosham, Portsmouth. Now let us welcome onboard Sue Cooper of the Isle Of Wight. We all wish her well as she is to run the Isle Of Wight group with our help. Give her a ring she would love to hear from you. (Details below.) She has a special day at Godshill Social Club, School Lane, Godshill, on Saturday 7th December 02 at 2 p.m. so please support her. Myself, Janet, Pam and Ray will be there to wish her luck on the day. Pete Barker. Brian writes: Challenge 2003 Your Committee have decided to repeat the Personal Challenge Sponsorship again in 2003 and to this end have made a provisional booking for two berths on the Jubilee Sailing Trust’s "Lord Nelson" for voyage LN546 leaving Southampton on 22nd September 2003. If you are a pituitary patient in the Portsmouth, Southampton and Isle of Wight Support Group area and interested (however remotely) in taking up the challenge, why not come to the Christmas meeting at Cosham Community Centre on 4th December 2002. Tony, Jan and Catriona will be there with photographs and stories of their challenge voyage last September to answer your questions. Don’t worry if you can’t make it to the meeting, please call or write to me at the address/phone number below and I will be glad to answer any questions you may have. Notwithstanding the above, if you would like to take part in a challenge but don’t feel quite up to sea voyage then if you have any alternative suggestions, please let me know. The above is not set in concrete! We are doing this for you. In order to get the necessary plans in place, raise funds and confirm bookings, anybody wishing to participate should let me know of your interest as soon as possible so that I can send you the challenge package. This needs to be completed, in order to formalise your interest, no later than the 31st March 2003. There may need to be a draw if interest exceeds resources in which case this would take place at the next group meeting. I will be very pleased to hear from you, whatever, suggestions, ideas, questions about JST or any thing else relevant to the challenge. Brian Avery 18 The Brackens, Locks Heath, Southampton, SO31 6TU. Tel: 01489-583728. I might not be Mr. Memory but I have never forgotten how to be sea sick, even on the largest ships the Navy has to offer. Fortunately civilian ships suit me well, though going to sea can be a fabulous experience and definitely recommended. Carers Item for Pit Pat News Kathryn Pearce. Already the shops have put up their Christmas decorations and we are all thinking about what to give for Christmas presents and whom we would like to spend Christmas with. This is a reminder to our readers that our Christmas Party date is fast approaching. I hope that many of you are able to join us. Last year’s party was a very enjoyable occasion. I am still acting as your Carer Representative, and still feeling that I have achieved very little last year. The only way that I can see to keep in touch with so many people without spending hours on the phone and appearing intrusive to some, is to ask that you let me, or someone on the committee, know if you would like someone to keep in touch with you. We will ring, or write to you if you prefer, as frequently or as infrequently as you like. Perhaps some of you would like a monthly phone call or letter, whilst others only a sixth monthly chat. There may also be some that just want to receive the newsletter and that is the extent of contact that they would like. Please let someone know your needs and we will try to meet them. Kathryn Pearce Carers’ Representative Chairman’s item Howard Pearce. A few weeks ago I was in the car, waiting patiently in a queue of cars trying to get out of the supermarket. Suddenly there was a loud thump and a jerk. The car behind had run into the back of me. Fortunately there was very little damage. The three miles an hour shunt had done nothing worse than smashing my rear number plate. This was soon replaced and we now have a shiny new number plate; in fact it’s the cleanest and shiniest part of the whole car. The incident happened without warning, when all I was doing was minding my own business. The car behind was coming towards me but I knew nothing about it until the impact. Even if I had seen it coming, there was no possibility of getting out of the way; the crash was inevitable. It would have made no difference had I being driving a really battered old car about to fail its MOT test. Nor would I have been any safer if I had been in a brand new Rolls Royce. I just happened to be in the wrong place at the wrong time. I was unlucky. It was the same with my pituitary tumour. I was just quietly getting on with my life while the tumour was growing slowly, but I knew nothing about it until the tumour impacted on something important and hormone production was affected. I could ask myself questions about it, such as: Why did it happen? Why me? Why this? Would I have avoided it if I had changed my lifestyle, my diet, my exercise regime? Was it some sort of punishment, retribution for something I did in the past, or failed to do? But these questions lead nowhere. The answer is that it was none of these things. I was just unlucky. It could have happened to anyone. It just happened to be me. OUR TRIP TO THE ISLE OF WIGHT – OCTOBER 12th Jenny’s version of events: When Pam invited me to the Isle of Wight for a day of relaxation and stress management with the Pit Pat Islanders, I thought YES GREAT! This is just what we could do with – a day of sun, sea and sand! I was careful to make a note of the time of the Catamaran and duly turned up at the meeting point on the big day with a good 2 minutes to spare. There was Pete and Janet, Pam, Howard and a very nice lady I hadn’t met before called Terri. When I saw that everyone was loaded down with blankets and pillows I started to feel a small stirring of unease that perhaps there had been a mis-understanding somewhere; and when Terri was introduced to me as the lady who would be giving us a talk on relaxation and self-esteem, I knew I had blown it. Anyway, I don’t think anyone noticed me hiding my bucket and spade under a chair, so it was OK. Having completed our journey by Catamaran and then train, we arrived in Lake at about 10, where we met Brian and Ann, who had come by car with an emergency supply of blankets and pillows. We set up the raffle, etc and the meeting began at 10.30. There was quite a good turn out of Island members and Terri was very clever at getting us all involved and participating. We exchanged ideas on what makes people stressed; how to spot the things that signal stress in other people as well as ourselves; if in fact all stress is a bad thing and what we can do to counteract bad stress in our lives. We all lay on the floor (I’m so pleased I got rid of the bucket and spade when I did) – Brian and Anne very kindly gave me a blanket – and Terri played a relaxation tape to us, which was wonderful. The second tape, which was played to us, was right up my street because you had to imagine yourself on a warm, sandy beach and relax while listening to the sound of the waves. It was amazing how effective it was. When I told Nick about this he fell about laughing, because it is a standing joke in the family that I have trouble staying awake! But this was different, because although I felt sleepy, I didn’t actually fall asleep but I was filled with the most amazing sense of well-being. At the end of the meeting we had coffee and biscuits and the chance to meet and have a chat with our Island friends, which was really nice, as I had never met any of them before. Terri very kindly gave each of us a tape and two scented candles so that we could practice our relaxation at home. I think that in the midst of our hectic lives where there seems to be less and less time to spend on the important things, it is really beneficial to take out just 20 minutes a day to unwind and get things back into perspective. So a big thank you to Terri for opening this up to us. (Maybe she could be invited to a Portsmouth meeting sometime in the future?) We finished our day with a meal in a café in Ryde, before making our way across the water back home, with a really good feeling of having spent a happy day amongst friends, and the knowledge that I’m going to have to buy a new bucket and spade! Thanks for these riddles Sue Cooper, I thought they were super dooper. I have sorted out more of the poems you were kind enough to send us for inclusion in future editions. Answers to these at the end. 1 A rank beginner all enjoy A strike can summon warning noise A small sun in reflected glare May gather those for festive fare. 2 I sit there but I’m rarely used But if my brothers are abused I take a place upon the way If not blown up I cannot play. 3 The hand of man is my command My head is straight or across I twist and turn my message home The threads the way I’m never lost 4 The court these days is looking odder Well behind the cannon fodder Cause for pause to contemplate And all upon the eight by eight. Some dates and phone numbers for the diary: Head Office Help Line 0870 774 3344 Tim Wheadon/Rhiannon Cole 0870 774 7111 Heather Eastmond (Tel Endo Nurse) 0870 770 8699 Gail Weingartner 0870 774 7003 Pat McBride 0870 774 2575 Pat Walmsley 0870 774 4038 Sue Cooper, Tanglewood, 7 Ternal Mead, Godshill, Isle Of Wight, PO38 3LJ. Tel: 01983 840495. Special day at Godshill Social Club, School Lane, Godshill, on Saturday 7th December 02 at 2 p.m. Christmas Party at Cosham Community Centre on 4th December 2002. At 7 pm. Next year's meeting dates all at Cosham Community Centre: Saturday 22 Feb 2003 Wednesday 30th April Wed 25th June Wed 24th Sept Lastly, I refer to this as your newsletter, and without input from you – yes, you – there can be no newsletter. So, please, please shower me with your anecdotes, jokes, poems, and True-life stories; in fact anything that the other members would enjoy and identify with. Otherwise I shall feel forced to fill the spaces with Salty Dits (Fishing stories to the un-initiated!) So don’t say you weren’t warned!!! nick_12@ntlworld.com Nick 1, Coronado road, Gosport, Hants. PO12 4RE. I have just been informed that there will be pickles and Christmas cards made by Jenny at the Christmas fayre. Answers: 1 A gong 2 A spare tyre 3 A screwdriver 4 Chess One more last thing, I have just spoken to Jenny. She has made some Christmas cards and pickles that will be for sale at the Christmas party, all profits going to the Pit Pat. Hope you all have a great Christmas. Newsletter Two - 2003 Hi all, Another year, another new years’ promise. Having to constantly battle to keep my weight down, and after talking to a friend who goes to weight watchers, I decided to set a target weight. Well it’s a bit of a tradition that I never achieve my new years resolutions. However I am pleased to say that not only have I remembered my drunken burbling (I feel so foolish) but after much hard work, I have achieved the new years promise by reaching my target weight, putting on half a stone! O.K maybe that’s not quite the idea, but then life is for enjoying. Email is good but sometimes a letter to put across a personal message is even better. I received a letter from Maggie in which she wrote: "To the committee and all the Pit-Pat members, I would like to say a sincere thank you for the exquisite Celtic brooch and letter opener. I wore the brooch to attend a London dinner and got very many compliments (about the brooch, not me). Thank you once more for being so caring – Maggie." Our chairman Howard Pearce. New year’s resolutions? No thanks! Happy New Year to us all. May it bring health, peace and happiness? Every year when I was young I used to make a set of New Year’s resolutions, and never broke any of them. Was it a superhuman effort? Hardly, when you consider what the resolutions were. Every year I would resolve not to swim the channel, not to climb Everest and, except for one year, not to get married. But that was long ago. Nowadays I try for more realistic resolutions, such as the following: Not to complain about the awful taste of my hydrocortisone tablets if I crunch one. To lose a bit of weight. Not easy; by the time I’ve had a dozen replacement hormone tablets and something to get them down with, that’s far too many calories already. Not to blame all of my mistakes and everything I do wrong on the ‘lump’ in my head. The trouble is, I’ve broken all those resolutions already and it’s still January. Maybe I should go back to those much easier resolutions of years ago. Or even give them up all together. Then I wouldn’t have to worry about breaking them. Gail writes: The Foundation’s 4th National Conference was excellent and a couple of The Portsmouth & S’ton group members were able to come along. We bid farewell to Professor Stafford Lightman, who has been Chairman since the national launch in 1994 and announced that he was stepping down after the Conference. He will be missed as he was instrumental in setting up the Foundation and has worked hard to help achieve the thriving organisation that it is today. Andrew Hewitt, a Craniopharyngioma patient, now steps into the Prof’s shoes. Andrew helped set up one of the earliest local support groups in Bristol. He’s a great personality and we welcome him on board. Also announced at the Conference was The Foundation’s successful application for further funding to undertake an Early Awareness Project. Our aim is to ensure that every pituitary patient be advised of our existence earlier in their diagnosis (or even pre-diagnosis), and to help GPs make that diagnosis sooner. The plan is to access GP training, which is happening now at St Georges Hospital in Tooting and a couple of other hospitals also. There will be further information in Pituitary News and this project can only improve on awareness, easier access to information & closer liaison with endocrine centres. This community funding is enabling me to work full-time as previously mentioned in our last newsletter - I’m still waiting for someone to volunteer their services as Joint Area Co-ordinator, the group is already suffering because I have even less time to devote, with more and more being taken on by Pam, my Mum, and Pete is still helping out. I’ve said it before, things can’t continue this way. TAKE HEED please . I’d like to pass on our thoughts & best wishes to those of you that we know are struggling or having a bad time at the moment. So chins up to Marissa & Derek Strugnell, Barbara Lacey, Chris Owens, Lizzie & Freda Puleston, John Lucas Williams, Julian Wadsworth & Brian Avery. Also, Pete Barker, Maggie Morgan and Jenny & Alan Allen continue to have their difficulties and if I haven’t mentioned YOU and you’d like a chat (or moan), do give me or Mum a ring (01428 651526 or 708128). A couple of lovely things to pass on, are our congratulations to Wayne & Nicole on the news of their expectant ‘bump’ and also a little bird tells me that Tracy in Poole has lost loads of weight, well done Tracy (sorry, can’t remember your surname). For those of you who have access to the Foundation’s Website, www.pituitary.org.uk take a peep at the information now available on diagnostic testing (blood tests) - it’s excellent. A Happy New Year to you all – Gail Brian Avery: Challenge 2003. As you will have read in the November Newsletter your Committee have decided to repeat the Personal Challenge Sponsorship again in 2003 and have provisionally booked two berths on the jubilee Sailing Trust’s "Lord Nelson" for voyage LN546 leaving Southampton on the 22nd September 2003. If you are a pituitary patient in the Portsmouth, Southampton and Isle of Wight support group area, it’s your turn to support them and get your applications in to take advantage of this very generous offer. There has been some response but surely there are a few more pituitary patients out there with an adventurous spirit? It’s not very often you get offered something for nothing so I’m really expecting a few more interested (however remotely) phone calls even though they may not all result in a follow up application. Those of you who came to our Christmas party will have seen and heard Tony, Jan and Catriona’s photographs and stories from their challenge voyage last September. If you missed it, I will be at the 22nd February meeting with some of those pictures and stories to answer any questions and provide information packages on the challenge. However don’t worry if you can’t make the meeting, please call or write to me at the address/phone number below and I will be glad to answer any questions you may have. In order to get the necessary arrangements in place, raise funds and confirm bookings, anybody wishing to participate should let me know of their interest as soon as possible, so that I can send them the challenge package. There is a cut off date for formal applications of 12th April, and I will be away for most of March, so don’t delay. There may need to be a draw if interest exceeds resources, in which case this would take place at the April group meeting. I will be very pleased to hear from you, whatever, suggestions, ideas, questions about JST or any thing else relevant to the challenge. All the best wishes for 2003. Brian Avery, 18 The Brackens, Locks Heath, Southampton, SO31 6TU Tel: 01489-583728 I wish, I wish I wish, I wish I could fly, I wish, I wish I could touch the sky, I wish, I wish I lived in a rocket, I wish, I wish I could fly, I wish, I wish lived on Mars, I wish, I wish I was the stars, I wish, I wish I could fly. George Cornish (Aged 7) Catriona’s voyage: Port Aft aboard the Lord Nelson www.pituitary.org.uk Newsletter Three - 2003 Hi all, Dare I say it: Spring is here or was depending on when you get this and the weather has been, well it has not rained and there have even been a few days when I saw a big yellow hot looking thing in a blue sky. I really enjoyed the last meeting and found the talk by Rachael Weaver about the NHS Direct very interesting and incredible to think that a Nurse is just a phone call away to answer any medical questions. Towards the end of the meeting we discussed various ways to spend the group’s money. Some of the ideas included: Craft fayre, Craft afternoon, hire a coach and perhaps visiting somewhere interesting or perhaps something more challenging, like jumping from a plane and getting sponsored for it. Anyway Brian expands on this a bit further on. One of the reasons for this interim Newsletter is to remind you all that the Group’s 7th Birthday is Wednesday 30th April 7-10 p.m. There will be entertainment an organist and singsong. 9 – 14th May carers week in Southsea. For further details contact Pete: 02392 791554 Our next group meetings are: Wednesday 25th June 7-10 p.m. Wednesday 24th September 7-10 p.m. The October Isle Of Wight date is to be set. Wednesday 3rd December Xmas party 7-10 p.m. The Isle of Wight meeting in December was a cold wet day and when the members got to the hall, there was no one there to open it. This was not Sue’s fault and was an oversight on the part of the hall owners. All was not lost however, as they went to the pub and had a great time. Please could I.O.W members come forward to help Sue Cooper to arrange meetings etc. Sue can be contacted on 01983 840495. That’s it for my ramblings. Now for the good bits. - Nick Gail writes: The Carers’ Workshop on 1st February in Southampton had six attending from our group & a further 4 who receive our Newsletter but aren’t able to come to meetings. So, Portsmouth & Southampton were very well represented, with members from the Guildford and Salisbury groups, also. We’d like to say a big thank you to Liz Rowen for making & donating her ‘cards for all occasions’ to help boost the bank balance. These are selling very well & will again be available at our 7th birthday party on Wednesday 30th April at Cosham Community Centre. The rest of the get togethers this year are booked for a Wednesday evening but we had a great time on 22nd February, which was a Saturday morning. Noticeably, none of us were rushing off home because it was daylight and so much nicer than turning out on a dark evening. Unbeknown to us, there was a karate competition on at the same time, so parking proved a little difficult. At first it was the children competing but then we girls espied the men doing their ‘manoeuvres’. That attracted our attention before we left!! Anyway, Pete assures us that there isn’t generally a parking problem and my question for you is would you like more Saturday morning meetings in the future? Pick up the phone or drop us a line to let us know what’s best for you (Pam on 01428 651526 or Gail on 01428 707003). For our 7th birthday, fine fayre and raffle prizes will be very welcome please, & Pete is currently arranging the entertainment. As our little Treasure(r) Eileen tells us that we have a few pounds to spare, we’ve had it put to us that it would be very supportive for those who don’t drive, if we help pay towards transport to & from our get-togethers. If anyone feels they would like to take advantage of this, please ring either Pam or Gail but please find out the cost before you phone. Let’s face it; the idea of a support group is just that, support and I think the following is a lovely example of this. Judith Earle came to our Xmas bash but had to leave before the raffle was drawn. She actually won a couple of prizes and I heard recently that Pete, & Ian who does our photocopying, drove all the way up to the Alton area to deliver said prizes. Unfortunately, Judith wasn’t in and they left the goodies with a friend. Now, isn’t that going that ‘extra mile’? TA lots Pete & Ian. FRIENDS There are those who pass like ships in the night, Who meet for a moment, then sail out of sight., With never a backwards glance of regret, Folks we know briefly then quickly forget. Then there are those friends who sail together, Through quiet waters and stormy weather. Helping each other through joy and through strife And they are the kind that gives meaning to life Anon. It’s a beautiful sunny Sunday, not a cloud in the sky. Steve and I are just off out on the motorbike for a leisurely trek around the South of our fair country. Yes, I feel rather weary, like I need extra steroids or the thyroxine, although recently adjusted, isn’t balanced, maybe I need the controversial growth hormone (questionable?), but it’s still lovely to be alive and it’s almost summer out there. What I mean to say folks is, that although we pituitary patients rarely feel ‘normal’ (whatever that may be?) or quite right, or under par, never mind ………… Enjoy every minute of every day, ‘cos life’s too short not to. - Gail. Challenge 2003 The time is fast approaching for this year’s challenge to be finalised but the response hasn’t been as anticipated. As a result, the committee has decided to open the sponsorship offer to carers as well as patients, because it would be good to fill the available places. So if there are any carers out there who would like to take up the challenge then please let me know, either by letter or telephone. I will gladly answer any questions and send out the details and application forms. Please be patient however as I am unavailable for most of March. Just to remind you, the Challenge takes the form of a Voyage on the JST’s ship "Lord Nelson" from Southampton departing 22nd September and returning to Southampton on 26th September. In view of the change to cover carers, the cut off will be extended up to the next Support Group meeting on the 30th April when it is hoped to finalise the arrangements. The Committee would very much like to continue with this initiative but it seems that perhaps a new approach is wanted. I would therefore like to ask all you patients out there, what form of Challenge would interest you? We’d like to ask members to come forward with their personal challenges and see what we can do to help? Maybe they could be sponsored Challenges in aid of Pit Pat. Give this a thought and please let the Committee or me know what you think, for or against, because we want to support you and provide what you want to the best of our abilities. I must stress that this initiative is aimed primarily at Patients. Best Wishes, Brian Avery, 18 The Brackens, Locks Heath, Southampton, SO31 6TU Tel: 01489-583728 THE BENEFITS FOR SUE OF GHI I’ve had my first growth hormone injection, But sadly they said I wouldn’t grow tall, But the needle’s so thin I didn’t know it was in I didn’t feel anything at all! I’ve always fantasized about being six foot Oh I’d feel so superior you know, I’d swing them all round Then throw them on the ground Then boy, would I go, go, go!! But you know, something’s happening to me, My right leg doesn’t feel quite right – Oh yes – oh no It’s beginning to grow And I’m growing to a very great height! Now you might say this was not what I wanted But I didn’t want everyone to talk, Cos my right side’s real tall, But my left’s still small, And I find it quite difficult to walk! Now it’s strange when I get on the dance floor to dance, Cos I can still boogie, of that there is no doubt. But my little leg swings in the air But to tell you the truth, I don’t care, Cos I have a really good time when I go out! Oh yes, I’ve always longed to be very very tall, But perhaps this time I’ve gone the wrong way, (Yet I’m told I’m very rare Cos I only got half way there) And good things do come in small sizes – don’t they!! Sue Cooper - 2002 Bits and Bobs. Did you know? The word "lethologica" describes the state of not being able to remember the word you want. "I am." is the shortest complete sentence in the English language. In the last 4000 years, no new animals have been domesticated. The name Wendy was made up for the book Peter Pan. If you keep a Goldfish in the dark room, it will eventually turn white. Riddles. Answers at the end. I am taken from a mine, and shut up in a wooden case, from which I am never released, and yet I am used by almost everybody. What am I? What gets wet when drying? What comes once in a minute, twice in a moment, but never in a thousand years? You are in a cold house in the winter. It is dark. You have one match. There is a candle and there is a wood-burning stove. Which do you light first? What belongs to you but others use it more than you do? Quotes! In the End, we will remember not the words of our enemies, but the silence of our friends." - Martin Luther King Jr. (1929-1968) "Knowledge speaks, but wisdom listens." - Jimi Hendrix Forgive your enemies, but never forget their names." - John F. Kennedy (1917-1963) If a situation upsets you, change the way you think of the situation. (Not sure) Cheers all, Thanks for the input. Nick 1, Coronado Road, Gosport, Hants. Email nick_12@ntlworld.com Answers to the riddles. Pencil lead, A Towel, The letter M, The match, Your name, Newsletter Four - 2003 Hi all, I’d just like to say a few words on my mum, Jenny’s behalf. She has been thinking of ways we as a group could raise some cash for the Pituitary Foundation. While out shopping she saw a booklet, A5 size created by a small charity. The idea was that on each page was a member’s favourite recipe with a short sentence perhaps stating how they got the recipe or why it’s their favourite. The booklet was then sold to members and their friends and family thus raising some money. We feel that we could do something similar, I am happy to type up the recipes and put them in a booklet format; which leaves the printing / photo copying. Does anyone know some one who perhaps could sort this out cheaply for us? We also thought that we could charge each person who sends in a recipe for inclusion in the booklet £1, Cheque made payable to Portsmouth & Southampton Pituitary Patients group. Unfortunately we can’t guarantee all recipes will be included in the booklet due to printing limitations and there won’t be any £1 refunds but everyone who donated money will be mentioned in the booklet and all profits will go to the group. I am starting the booklet immediately, so please send me your favourite recipes (1 per person) and cheques to: Nick Allen, 1 Coronado Road, Gosport, Hants. Po12 4RE. Tel: 02392 641365 email: nick_12@ntlworld.com Area co-ordinator: Gail Hi, Gail here good people with a few bits & pieces to let you know about. First of all, some lovely news is that Wayne & Nicole have had a lovely baby girl weighing in at 10lb 2ozs, which to someone who’s never given birth (me) sounds massive and makes my eyes water ! Nicole is a prolactinoma patient but is off all medication and doing very well. The proud parents are hoping to bring Yazmine Rose along to one of our get-togethers so’s we can have a cuddle and coo at baby. The Salisbury group have challenged us to a skittles match, which ought to be good fun. However, rather than us traipse all the way to Salisbury, we are trying to source a half-way skittles alley. Do any of you out there have any suggestions please? Let me or Mum (Pam) know on 01428 651526 or 708128. I’m sure we could have a good laugh plus raise a little money at the same time. This newsletter may not be out before Saturday 7th June but a meeting is planned for the IOW in Bonchurch at 11am, for details contact Sue Cooper on 01983 840495. Steve and I had a lovely day over the fair Isle a few weeks ago on his motorbike, visiting the tiger sanctuary and cruisin’ round viewing the beautiful countryside & coastline. It was like being on holiday but too short unfortunately. We’ll be going back soon though. We have a new member on the island, who has recently had an operation, and we hope to welcome Sarah and her family at Bonchurch. For a relatively rare condition (?), it’s quite incredible that there are 32 pituitary patients on the IOW that we know about! Our next get-together at the Community Centre in Cosham is on Wednesday 25th June at 7pm. We’ll be welcoming an interesting & amusing guest speaker, and with a welcome break from the pituitary/medical tradition, Ronnie the Ranger will be giving us a talk & slide show about our lovely countryside. Country bumpkins & Urbanites alike, all very welcome, together with a raffle prize or two please. In the last newsletter, we offered help with travel expenses so’s those who don’t drive, can consider coming along and have settled on a ceiling of £10. If you’d like to take advantage of this, please contact Mum or I on the above telephone numbers. Week beginning 9th June is Carers Week & in Southsea, there will be a thanksgiving on Wednesday 11th and an exhibition on Thursday 12th. There are however, things going on all week and Grace Wiltshire the Foundation’s Carers Project Manager, will be attending on one day. The project has been very successful and this will be an interesting week. For details please contact Pete on 02392 791554. That’s all the info related stuff then folks. I’ve one other thing to run by you though. You may be aware that I am about to move into an office in Midhurst, together with whoever is taken on board as Southern Regional Co-ordinator. I’m very lucky to be the recipient of a £500 anonymous donation towards the very reasonable rent, but although managing to scrounge bits of furniture left, right & centre, we’re short of a decent photocopier. Not the cheapest of equipment of course, but my question is do any of you know where one is either up for grabs, a company that would let one go to a charity at a discounted price, or a company that leases at a very reasonable rate? Please give this lots of thought for me, because a good photocopier would enable us to take some of the load from Head Office. TA lots and bye for now - Gail Brian says: Challenge 2003 Update You will have read in previous newsletters my requests for applications for this years Challenge sponsorship that your committee are offering. I’m sorry to report that as I write we have no applicants currently registered. In an attempt to fill the places we have opened the offer to our neighbouring groups at Salisbury and Guildford. We would really like to find applicants from our own members. It’s not too late – the cut off is now extended to the end of June so pick up the phone or write to me if you need more information or have any questions. Best Wishes, Brian Avery 18 The Brackens, Locks Heath, Southampton, SO31 6TU. Tel: 01489-583728 A hospital decided to ask for the doctors thoughts on the construction of a new wing. 1/ The allergists voted to scratch it. 2/ The dermatologists preferred no rash moves. 3/ The neurologists thought that the admin. had a lot of nerve. 4/ The obstetricians said they were labouring under a misconception 5/ The ophthalmologists considered the idea short sighted 6/ The pathologists said "Over my dead body!" 7/ The radiologists could see right through it. 8/ The paediatricians said "grow up" 9/ The urologists felt that the scheme would not hold water. 10/ The plastic surgeons said "This puts a whole new face on things" 11/ The psychiatrists thought it was a mistake 12/ And the surgeons decided to wash their hands of the whole thing. Picked this up at my badminton club this afternoon. Regards Ann Avery. Our Chairman: Howard Trying new recipes At a recent Portsmouth, Southampton and Isle of Wight area committee meeting we discussed producing a small Pituitary Foundation recipe book. People would be invited to contribute a favourite recipe for the book, saying in a few words why this recipe was a particular favourite. My favourite recipe for the book? Home-made sweets, fruit and chocolate squares. Very nice, though not exactly low calorie. But then, the point of trying new recipes is that it can be fun, and we might really enjoy some of them and wish we’d tried them earlier. When Kathryn and I were first married we wanted to make sure we had a varied menu, so we agreed that at least once a month we would try something new from a recipe book. Then if we liked it we could try it again as often as we wanted. After a few years of marriage we became less adventurous. Maybe we were becoming stale, or perhaps it was having children that did it. Possibly it was the effect of my reduced hormone levels. Whatever the reason, our menu became rather restricted and we were less interested in trying something new. However, now the situation has changed again. The children have grown up and left home. Due to taking replacement hormones, my hormone levels are much better, and my interest in new experiences has re-emerged. So perhaps it is time we went back to trying a new recipe once a month again. I’ll have a word with Kathryn and see what she says. Carers’ representative: Kathryn Carers’ Week and Carers Pack Grace Wiltshire, the Pituitary Foundation Carers Support Project Manager, will be helping at an Information Day in Southsea during Carers’ Week which runs from 9th to 14th June. If you have access to the internet you can find information about Carers’ Week on www.carersweek.org. She has also sent me a number of small questionnaires for carers, together with freepost envelopes to return the completed questionnaires to the Pituitary Foundation in Bristol. Basically the questionnaire asks two questions: Have you any suggestions for items for a CARERS PACK, which will include information on carers’ organisations, carers and health, rights and benefits? Are you interested in writing a carer’s story? If you would like a copy of the questionnaire, please contact me, Kathryn Pearce, on 01243 863627 and I will send you one. You could also collect one from me at the group meeting at Cosham on Wednesday 25th June. JEFF’S STORY One day, at the start of the Easter school holidays, my husband Jeff had been helping with some plastering for family, when suddenly he arrived home with his trainers in his hand [not on his feet!] and a tissue on his eye. By accident he had got a blob of plaster in his eye, and after trying everything to wash it out, he decided to come home. He’s a very thoughtful person, and even in pain, he didn’t walk through the house in messy trainers! Well, two hours later I had to drag him to casualty to have his eye washed out. This was quite painful and he was given an eye patch. Walking home, he said that his other eye wasn’t fantastic and good job I was with him. Three weeks of eye hospital checks, drops and creams came and went; until at one visit the consultant decided his other eye was weak [from birth in his estimation]. I happened to say that I wasn’t happy with his idea, and that I had a feeling something was wrong with his vision. As we sat in the waiting room we were testing each other to see who could ‘see the best’. Jeff had mentioned that the page he was reading had blank patches, and he missed things in his outer vision [fields]. The consultant decided, as a last check, for a scan to be done – and alarm bells started ringing. Imagine our shock when the day after the scan we were called in and told Jeff had a very large tumour that had been there a long time. The doctor kept asking did he feel ill etc, and he said no. Looking back he had been a bit less enthusiastic going to work, but who doesn’t. I told him for a while he’d seemed as if he wasn’t listening and looked a bit distracted sometimes. Well you probably know the rest of how things go. Scans and tests followed very quickly and somehow we still got on with plans for a street party, and put a brave face on for the children. The day of the operation was very hard. Jeff had never been in hospital or away from me for a night in seventeen years. I thought that the next day he’d be awake and talking to me and things would pick up. How wrong could I be? After a full craniotomy, the surgeon rang me to say it had been very difficult, as instead of the tumour being soft, it had become hard and calcified around Jeff’s optic nerves. But he said he’d got a lot out, and would wake him the following day. Two days later, after going twice a day to Liverpool to see Jeff, I was met by a doctor in intensive care who asked me if I had spoken to the surgeon. I hadn’t, and he asked me to sit down. I stood very still and said ‘just tell me!’ ‘Jeff is blind’ he said……. Time seemed to stand still. I asked did he mean it was just blurred [his sight]. No, he said, he could see nothing but black. I went home that night in a bubble; I couldn’t think straight. It was arranged for me to see the surgeon the following day. When I sat with him he was so upset. Medically, he said it was so very disappointing; personally, he said he was so sorry. I asked that perhaps after the swelling went down, by some chance, he would see. No he said the nerves are so destroyed, there’s nothing to fix, or heal. He had also lost all sense of taste and smell. We would be helped; he went on, to get a guide dog etc. He did say ‘There’s always hope and miracles, but go home and tell your children.’ But I didn’t, I just couldn’t. Two days later Jeff’s nurse in intensive care rang me to say Jeff could see a shadow. I was so happy; yet so nervous it [his sight] may go again. Well, seven months on, and after many tablets, patches and injections we are getting there. A miracle did happen. Jeff’s registered blind, but both eyes now have some vision – he can roughly see people and has walked to the corner shop alone once, and he manages very well, even though he’s blind, cannot taste, or smell and is very deaf. So although we don’t know yet if the radiotherapy has worked, he can see me and our children; he’s alive and that will do for now. He’s so laid back. So, everyone out there, don’t ever say never and value all of your senses, Jeff has only touch left. Written by Sue Cookson – Jeff’s wife and carer. Dates for the diary! There will be a summer BBQ at the Hilsea lions, Portsmouth on August 2nd starting at 1pm, the price is about £5.00 and there will be a raffle, quiz and of course food, but bring your own drink. Hilsea lions are located in Scots lane, a turning off military road, near the News centre, Hilsea, Portsmouth. Further information can be obtained from Pete Barker Tel; 02392 791554. Our next meeting is on the 25th of June at the Cosham community centre at 7pm. Wednesday 24th September 7-10 p.m. at the Cosham Community Centre. The October Isle Of Wight date is to be set. Wednesday 3rd December Xmas party 7-10 p.m. Committee Meeting - 17 July – To be confirmed - Pete and Janet's. Carers Week - w/e 13.6.03 - Pete having a stall in the Pyramids Southsea on Thurs 12.6.03 - be pleased to see anyone who wishes to give a bit of support. There is to be a fund raising tin collection outside Asda in Gosport one Saturday sometime in August - anyone who might be interested in offering support please contact Jenny, Tel: 02392 588886 If you want to see the Newsletter in colour let me know and I can email it, thus saving on postage. Cheers all - Nick Nick Allen - Newsletters

Hampshire Newsletters 5 to 9 - Nick Allen

Newsletter Five - 2003 Hi all, It’s been a fairly busy time for the group since the last Newsletter, what with the committee meeting, Carers’ day, fund fundraising out side Asda and a Bar-B-Q at the Hilsea Lines. Pete Barker has asked me to thank everyone who attended the Bar-B-Q and let you know that due to popular demand there will be a race evening, date to be confirmed. The Carers’ day at the Pyramids in Southsea was organised by the local Carers’ association and was a success in promoting not just our group but various other charities. Attending was Pete Barker, Tom Blair the lord mayor of Portsmouth, Miss Eileen Dobson the president of the Portsmouth Carers association and Grace Wiltshire the Carers Support project manager, Howard, Catherine and Jenny. The AGM is to be held at Cosham Community Centre on Wednesday 24th September at 7pm. Gail our area co-ordinator has been busy organising a Q & A for that evening. Then On December 3rd at the Cosham Community Centre it’s the Christmas party where there will be a modern band providing light entertainment, Ship movements permitting as they are sailors. As well as the raffle there will also be a bring and buy sale with all profits going to the Pituitary Foundation, though what you don’t sell you take back home with you. Gail the area co-ordinator. Hello to you all – It’s quite amazing how time flies by and now another issue of our local newsletter is due. First of all, we spent a lovely Saturday afternoon recently at the Hilsea Lines in the blazing sun, with Ronnie the Ranger cooking our sustenance on the barbeque. We took our own favourite tipple but were given a very nice glass of bucks fizz when we arrived. Thanks to Pete for organising this for us. Lots of you know Neurosurgeon Peter Lees & have possibly come under his particular ‘knife’. We were very pleased to welcome his secretary Sally to the BBQ as well as our favourite nurse Bridget Borland & her family. A great afternoon was had by all, with a few pennies being raised for the coffers, from the sale of tickets and the ‘ubiquitous ‘raffle. Speaking of money, lots of thanks to Jenny & Alan Allen for shaking their donation buckets under the noses of shoppers outside Asda and raising £98. Equally important though, is the fact that this helps to raise awareness of pituitary disease and the existence of the Foundation. A fundraising event is being held in London on 5th October and Jenny has bravely volunteered to abseil down St Guys Hospital. We as a group, have sponsored Jenny from our said ‘coffers’, for the initial £250 she has to raise in order to take part & she is now seeking further sponsorship. So, do please add your name to the attached form and send in to Jenny at 75, Priory Road, Hardway, Gosport PO12 4LF. All monies raised will go to Head Office and let’s face it, without Bristol, we wouldn’t have information leaflets, GP Factfiles, a fantastic website, Pituitary News, a helpline …………. I could go on but you get my drift I’m sure. At the end of the day, we all benefit, so please support Jenny, ‘cos I know she’s terrified! I’m pleased to report that the Early Awareness Project is forging ahead with a Pituitary Patient Factfile & Charter in the final stages. The Factfile includes Patient Guidelines, useful questions to ask, a checklist of symptoms, a medication log, a patient card, etc. We are approaching celebrities for their patronage, currently producing Press Release Guidelines & building upon our relations with endocrine centres and endocrinologists. Hey folks, that exciting time of year is fast approaching, the Portsmouth, S’ton & IOW AGM, to be held at Cosham Community Centre on Wednesday 24th September at 7pm. Don’t worry though, the AGM part will be short and to the point, so’s we can get on with a talk & QA session with Helen Barlow and Kate Rowlands from the Pharmacy in S’ton General Hospital. Helen & Kate will tell us all they know about the wonderful (?) medications, we as pituitary patients find it necessary to take. It’s been several years since we welcomed a pharmacist and there has been lots of progress in that time. Come along and ask your questions, which you don’t always remember to ask the doctor. It is of course, now time to invite new committee members on-board to join the stalwart & merry band who currently meet approximately 4 times a year, in order to keep our pituitary patient support group alive & kicking. Your current Committee are: Howard as Chairman – he is happy to resign as Chairman but remain on board if a Vice Chair comes forward. If you step forward to ‘wait in the wings’ you can be groomed nicely to take on the ‘Chair’ next year…. An up & coming star! Janet as Secretary - Janet is happy to continue taking the Minutes and ‘hosting’ our Committee meetings. Pete – Mr Stalwart himself, who always ‘knows a man who does’, & together with Pam, Mrs Liaison Officer Supreme, basically hold the group together as any good Area Co-ordinator should. The controversial thing is, it’s me Gail, who actually holds that particular title, but we all know which 2 do the work! I’m just the one who fronts the meetings, usually with no shortage of things to say. Eileen as our little Treasure(r) – still cooking the books, hoarding the dosh and moaning when she has to write out a cheque. Kathryn keeps a look out for our Carers & liases on their behalf, Nanette delivers pituitary information & posters to the clinics on a regular basis, Nick puts together this fab newsletter for us & then passes it to Jenny for distribution. As you know, the Allens’ also raise us quite a few quid. The next two are not committee members but are key players in the distribution of the Newsletter. John looks after the database and keeps it up-to-date so that you receive your newsletters and know about the meetings and Ian Stemp photo copies the Newsletter. That’s your Committee in a nutshell but it’s they who put forward ideas, bring about special projects such as the Jubilee Sailing Trust trips (via Brian Avery), raise funds, organise the get-togethers and speakers, & support you our members. VACANCIES - We know YOU have a skill , come aboard the good ship ‘Pituitary’ & show us. Please nominate yourself or AN Other Vice Chairperson - Back-up for chair, with a view to taking on chair position in the future Committee Members: Skills req’d: Persuasive tongues & organisational skills, friendly personalities, PR, committee Fundraisers: Car-Boot Sales, Auction of Promises, Men’s Sponsored Leg/Chest Wax, Sponsored Fancy-Dress Car Wash ……… endless possibilities Contacts: Do you have? Stationery or stamps to donate, ideas, an imaginative mind, time on your hands …… Do you know? the source of a good photocopier for the Midhurst Office, a musical group/band who’d play for free, , schools & businesses for a ‘dress-down’ day, radio/TV presenters to promote the pituitary cause, etc, etc, etc Gail & Pam look forward to hearing from you - 0845 450 0378 or 01428 651526 Our Chairman: Howard Pearce Life without a pituitary tumour My prolactinoma was first diagnosed in 1995, but when I look back at some of the things that have happened over the years, the tumour, and its effects on my hormones, seem to have been around for most of my life. That made me wonder, what might life have been like if I had not been the lucky owner of an oversized pituitary gland, with a set of abnormal hormone levels? There are several aspects of my personality that I can attribute to changed hormone levels. I have never been ambitious or competitive, probably due to low LH, FSH and testosterone levels. I have been described as a relatively unemotional person, not because I am ‘cold’, but due to low levels of ACTH, cortisone and adrenaline. I was rarely impulsive, perhaps caused by low TSH and thyroxin. All of these aspects of my personality have affected the course of my life. If I had been more ambitious and competitive, I might have chosen a completely different career, and perhaps made more of a success of it. Been a successful captain of industry, perhaps, or a professor frequently jetting to international conferences. I would have been a lot healthier, instead of feeling ‘not quite right’ much of the time. My subdued emotional response to events has sometimes caused me problems too. Also, I might have chosen not Kathryn but a different partner in life, because my ‘type’ would have been quite different. So far, it sounds as if the tumour had only negative effects, but life is not that simple. There are other effects too. Low sex hormone levels have always made me look younger than my years. Which means that much younger women sometimes chat me up, and I’m certainly not going to complain about that. (I hope Kathryn isn’t reading this!) Also, my life has taken a completely different path, and has opened up new horizons for me, in a way that would never have occurred if I had been fully healthy. Even the lack of emotions is something I could potentially use in a positive way, because it has given me special experiences that might be of interest to researchers studying the effects of emotion. You may have had a pituitary problem for many years. Or you may only just have been diagnosed. Whichever it is, you will no doubt have discovered some of the negative aspects of having something wrong with your pituitary gland. But there are positive aspects as well, and I hope that all of us can find those positive features and benefit from them. Finally, a request. As I said, for many years my emotional response to events has been very subdued, because of low levels of ACTH from the pituitary and other hormones. I believe that this has had some significant effects on my life, including my memory. Many pituitary people complain that their memory is not as good as it was, and this may be due to reduced hormone levels, possibly hormones affecting the emotions, or sex hormones. I also suspect that my low ACTH, cortisone and adrenaline levels may also be the reason why there is no spiritual side to my life. I would like to be involved with a research programme to investigate some of these effects, in collaboration with a researcher at a university, hospital or elsewhere. This would be more effective if there is information from several people with subdued emotions and hormones. Are there any readers whose emotions seem to be subdued? People taking replacement hydrocortisone are the most likely candidates, though it would only apply to some people on hydrocortisone, not to all. If you think that you do have subdued emotions because of your pituitary problem, please contact me, Howard Pearce, either at a PitPat meeting or ring me on 01243 863627. Brian Avery Challenge 2003 Update Just to keep you informed. The time is rapidly approaching for the voyage we have booked for this year’s Challenge and a resolution regarding the assignment of the two places reserved has been reached after a lot of deliberation. In the absence of any candidates coming forward from our own group, David Hill from the Salisbury Group has been nominated. As David will need a buddy, with the much appreciated support of the committee, I will accompany him. Because David has some memory problems, his final acceptance is subject to a JST assessment that will not be possible until shortly before the voyage takes place. We are, therefore, very grateful to Tony Emm for agreeing to be on stand-by should David be unable to sail. The voyage is scheduled to take place from 22nd September to 26th September leaving from Southampton. Any members wishing to wave us off would be welcomed. Call me nearer the date for details. Best Wishes, Brian Avery 18 The Brackens, Locks Heath, Southampton, SO31 6TU. Tel: 01489-583728. Jenny Allen: Fundraiser and fearless abseiler. Hi, everyone!! Hope you’re all having a good summer and that the hot weather hasn’t proved too much for you. It takes some getting used to, doesn’t it. I suppose I had better come clean – I’m about to indulge in the thing that Nick says I do best (bless him) – NAG!!! So if you’d really rather not listen to me going on then now’s the time to turn to the next item in our Newsletter. I feel a bit like the crystal ball lady who says "Is there anybody out there?" In our last newsletter we spoke of an idea we had to produce a small, inexpensive cookery book. To help with the costs etc., and to give you all a chance to participate we requested a favourite recipe accompanied by £1. I am absolutely overwhelmed by the total lack of response!!! Perhaps you feel £1 is too much, perhaps you’re all possessed of the will power I would dearly love to have and live entirely on salads! Or perhaps you think it’s not much of an idea anyway? Any response would be better than none at all, and if you think it’s a bad idea or if, indeed, you have a better one, I would love to hear from you. Honest! I guess as time moves on we may feel we have less need of the Pituitary Foundation but, without stealing Nick’s thunder (because I am hoping that one day he will feel like telling his story – which I think is quite inspirational), I should like to tell you just a bit about how we felt when we finally realised that Nick’s problems weren’t just going to go away. After years of surmounting problems we were finally informed that Nick had a massive Pituitary Tumour – that same evening he was admitted to Southampton General and was operated on the next morning. A few days later we were informed that there was no cure for this terrible thing that had befallen our son. I think we will never forget the total and absolute despair we felt at this news. Also the feeling that we were alone in this. But not so. Dear Bridget, our liaison lady, was there with comfort, kind words and even some gentle humour – and – the wonderful news that not only were we most definitely not alone in this, but there was a whole society devoted to people with Pituitary Tumours, and their carers. We owe so much to so many people for helping us to move forward from those first terrible months. To be able to see light at the end of the tunnel, to keep hope alive that things can and will improve. So although our needs may not be so great as perhaps they were, maybe we should keep in mind all those who are at this moment facing the heartbreak of discovering that a loved one is ill, and the need they have to know they are not alone – there is a friendly voice at the end of the phone; informative literature and videos at their disposal; newsletters and best of all (I think) the opportunity to attend meetings where you can talk with people in similar situations, who you know are going to understand. S0 – you know what is coming next!! All this doesn’t fall out of the sky – it has to be paid for. And we can all play our part in fund raising, be it ever so small it will play it’s part in making someone’s lot just that bit easier. So, sorry about the lecture, but hope its food for thought. Take care, Jenny. LEARNING After a while you learn the subtle difference between holding a hand And chaining a soul And you learn that love doesn't mean leaning And company doesn't mean security And you begin to learn that kisses aren't contracts And presents aren't promises: And you begin to accept your defeats With your head held high and your eyes open And with the grace of an adult, Not the Grief of a Child. And you learn to build all your roads on today because tomorrow's ground is too uncertain for your plans. After a while you learn that even sunshine burns if you get too much so plant your own garden and decorate your own soul - Instead of waiting for someone to bring you flowers. And you will learn that you really can endure, That you really are special. And that you really do have worth. So live to learn and know yourself. In doing so, you will learn to live. Cheers for now. Barbara Lacey 1. The allergists voted to scratch it. 2. The dermatologists preferred no rash moves. 3. The neurologists thought that the admin. had a lot of nerve. 4. The obstetricians said they were labouring under a misconception 5. The ophthalmologists considered the idea short sighted 6. The pathologists said "Over my dead body!" 7. The radiologists could see right through it. 8. The paediatricians said " grow up" 9. The urologists felt that the scheme would not hold water. 10. The plastic surgeons said "This puts a whole new face on things" 11. The psychiatrists thought it was a mistake 12. And the surgeons decided to wash their hands of the whole thing. Regards Anne Avery Thanks for all the input, keep it coming. Dates for the Diary: AGM: 24th September at 7pm. Committee meeting: 27th November 7pm. Christmas Party: 3rd December 7pm. Meetings for next year 2004. Race evening to be confirmed. 27th March 10am. 30th June 7pm, 30th June 7pm, 29th September 7pm, all at Cosham Community Centre. Also Jenny is running out of stamps, could you please send them to Jenny Allen, See Gails bit for address. Thanks all nick_12@ntlworld.com 1, Coronado Road, Gosport, Hants. PO124RE.If you want to get this emailed let me know, this is scanned thoroughly using constantly updated anti-virus software. 450ft ABSEIL SPONSORSHIP FORM THE PITUITARY FOUNDATION NAME….Mrs Jenny Allen On behalf of the Portsmouth & Southampton Pituitary Group. ADDRESS….75, Priory Road, Gosport, Hants. PO12 4RE. The person named above has agreed to take part in a 450ft abseil from the tower of Guy's Hospital, London on Sunday 5th October. 2003 in aid of The Pituitary Foundation (Charity No. 1058968). The aim is to raise as much money as possible through sponsorship and we would greatly value your support. £10 would go a long way but any amount will be gratefully received; part of the money raised pays for the cost of the event, while the remainder goes directly to The Foundation. The new 'Gift Aid' rules mean we can reclaim tax on all donations made by UK taxpayers. To do so, we need your full name and address, including postcode. Please also tick the GA * box to confirm that you pay tax annually which is equal to the amount we reclaim on your donation. In practice, you are covered if you pay even a tiny amount of tax (income or capital gains); for example, if you sponsor the participant to the tune of £25, The Foundation will receive an additional £7 as long as you pay that much in tax in the current tax year. In accordance with the Data Protection Act, The Pituitary Foundation will only use your details for the purpose of this tax reclaim. PLEASE BE AS GENEROUS AS YOU CAN - THANK YOU FOR YOUR SUPPORT Full Name (please print) Address (please print) Postcode Date Amt£ GA* Newsletter Six - 2003 Hi all, Lots of info to pass on in this edition so I’ll keep my waffle to the point. Jenny has asked me to thank everyone for their kind generosity in helping her to raise £857.00 for the PitPat. She says she is sorry for not thanking everyone personally but there were so many. Hi All, Gail here with a few bits to interest you: Our Xmas bash is fast approaching and will be on the evening of 3rd December, 7pm at Cosham Community Centre as usual. For the first time and at the suggestion of Maggie Morgan, we are holding a Bric a Brac stall and would welcome any items you may like to bring along to help swell the coffers. However, if your bits & pieces don’t shift from table to appreciative customer, we do ask that you please take them back from whence they came. This is of course, down to lack of storage space. On the night, there will as usual, be the ubiquitous (I’ve swallowed the dictionary), raffle and refreshments. Each of your committee will be bringing along homemade (?-Tescos here I come!!) Christmas fayre, but we hopefully anticipate that you will also fetch along your favourite Xmas munchies too please. Sue Cooper, our Isle of Wight co-ordinator, passes on her apologies for not having been able to organise another get-together as yet. This is because her house sale has fallen through and she asked me to pass on that she won’t be letting you down folks, as soon as she has found a new place and moved in, she will be holding a meeting. Sue says she’ll be in touch. Wouldn’t want to harp on about that necessary evil ‘MONEY’, but very few of you seem to be placing a few coppers into the refreshments donation ‘receptacle’ as previously requested. It would help keep our merry group accounts in the black and when substantial funding is raised, by good people like our Jenny, we can then help Head Office in Bristol by forwarding some to them. Let’s face it good people, without the main body of the Pituitary Foundation, we wouldn’t have Pituitary News, information leaflets, a fantastic website – www.pituitary.org.uk , 40 local support groups nationwide (& Ireland), a national conference ……… I’m sure you get my drift and in actual fact, the Foundation needs all the financial support it can get at this moment in time. On a lighter note however, the Freemasons Grand Charity have financed my Midhurst office rent, rates, light & heat for a year. This is fantastic news indeed and if any of our readers are members of this very fine and possibly, often misunderstood organisation, thanks to you also. Sorry if my terminology with this isn’t correct. And talking of national conferences…….. 5th National Conference The fifth national conference of the Pituitary Foundation is to be held at the University of Reading, on Saturday 24th April 2004, which basically is only just up the road. Take it from me, our conferences are well worth attending and with it being so nearby in just 6 months time, you’d be nuts not to take advantage of having it on your doorstep. Feedback from those who have attended previous conferences has been extremely positive. It provides an opportunity to find out more about many aspects of pituitary conditions and to meet not only other patients, but also professionals with a particular interest in this area of medicine. The format includes a welcome and introduction from the chairman and a series of Workshops covering a wide range of topics. Examples from previous conferences include - Cushing’s; Diabetes Insipidus; Adult Growth Hormone; Psychiatric/Psychological Issues; Hormones, Sex and Fertility; Carers; plus many more. I really hope to see you there, the conference will once again, be an extremely useful and informative event - you can count on it. Meetings for 2004 – where did 2003 disappear to in such a hurry ? Saturday 27th March – 10am-12.30pm, our 8th birthday and we hope to welcome a representative from the Alzheimer Society, who will give us a talk on short term memory loss, which does seem to affect lots of us. Wednesday 6th June – 7pm Wednesday 29th September – 7pm, speaker to be arranged & our AGM (don’t run for cover!) Saturday 11th December 10am-12,30pm – Xmas bash All the above at Cosham Community Centre Aren’t you impressed, we are sooo organised – please reserve these dates in your diary Our chairman Howard…. Side effects Those of you who were at the AGM in Southsea in 2002 will probably remember the guest speaker, Dr Sanderson. In his speech he said that people put on weight for one simple reason, they get more energy from their food intake than the energy they use up in day to day living. In other words, there are no excuses; if you have gained more weight than you should, you must either eat more sensibly or get more exercise, or both. He gave the example of a man who could put on something like a stone in weight each year – simply by eating, every day, half a doughnut more than he needed to balance his energy use. Oh dear. All my illusions destroyed by a scientific approach. However, I am far from convinced that the story is quite as simple as Dr Sanderson made out. I am at least a stone heavier now than I was when I first started taking replacement hormones. Naturally, I always attribute the weight gain to my hormone treatment, especially to the hydrocortisone. It was around the time that I started hydrocortisone treatment when I gained weight. In particular, my neck seemed to grow very rapidly, and in a few months I had gone up about four collar sizes. That seems more like a specific effect of the hormones, rather than simply from eating too many doughnuts. The leaflet with the hydrocortisone tablets mentions several possible side effects, including increased appetite, putting on weight and swollen body or face. That sounds clear enough to me, as explanations for my gain in weight and for having to buy new shirts because the old ones no longer fit me. On the other hand, the leaflet also lists many other side effects of taking hydrocortisone, and fortunately I have avoided most of them. Which makes me wonder if blaming the weight gain on the hydrocortisone is just an excuse. The useful information on the hydrocortisone leaflet also includes the Bristol address and telephone number of the Pituitary Foundation. Other replacement hormones have different side effects. Thyroxine is another that is taken by many of our members. Again there is a long list of possible side effects on the leaflet, including excessive weight loss. Weight loss is a side effect I have not suffered from, but the list does include one other side effect I do experience – heat intolerance. In the summer I am too hot most of the time, and simply have to get used to it, whereas in the winter I would never need to use the central heating if I lived alone, because I rarely feel cold. Side effects do not have to be unpleasant. Testosterone, for example, is prescribed for me mainly to prevent osteoporosis. But testosterone is also a sex hormone and I have no complaints at all about some of its side effects. There have been other side effects too. For example at one time I found myself feeling sick in the mornings, and this was made worse by certain smells. If they were cleaning the drains or tarring the road, those smells were fine, but if someone walked into the room with a cup of tea, the smell immediately made me feel nauseous. Does this make me one of the few men to experience morning sickness first hand? If you have taken a range of different medication over the years, you will almost certainly be only too aware that virtually all medication has side effects. Even when the replacement hormones are only there to restore our hormone levels to ‘normal’. Indeed, you might well consider yourself to be a leading authority on the side effects of medication. Sometimes we just have to tolerate the side effects, because of the beneficial effects of hormone treatment or other medication. Especially if there is no real alternative on offer with fewer side effects. However, if the side effects are severe, disturbing or painful, please don’t just suffer in silence. Contact your pharmacist, GP, endocrinologist or the Pituitary Foundation nurse counsellor in Bristol. I have certainly had unwanted side effects at times over the years, including a tablet that caused nausea half an hour after taking it, and another that led to me being rushed into hospital with a severe headache that lasted for almost a month. I also know people who had very severe side effects even from medication given to them while they were an in-patient in hospital, and the doctors ignored the problem for a long time because such side effects are very rare. Very rare they may be, but they can still happen. So if side effects are a problem to you, get help from the professionals. Even for specialist consultant doctors, the only information they have on side effects is what we, the patients, tell the medical profession. Don’t suffer, and don’t deprive the professionals of the knowledge they need; tell them about any nasty side effects and ask what can be done about it. You never know, when they try to work out why you had the side effect, you may effectively be contributing to medical research progress. Jenny’s Abseiling Experience as viewed by Pam Weingartner Having been to a wonderful surprise party arranged by Gail & Joy (our other daughter) for Ray’s 80th birthday the evening before and getting to bed around 2am, we were up early as usual on the morning of Jenny’s abseil - 450 feet down the side of Guy’s Hospital in London. Ray and I took our dog Tanker for his walk, then caught the train to the ‘big city’, with me, the ‘country girl’, leading the Londoner !! (Ray hates the ‘big smoke’ now and never goes there). We met up with Jenny, Alan her husband and son Nick (our editor) – it was Nick’s idea that his Mum should do this feat. Jenny had already registered, so we had a welcome cuppa, and sat awaiting the call for Jenny to go ‘up top’. Things were running late, which didn’t help her (or Alan’s) nerves but we had a few laughs, which we hoped relieved the tension somewhat. Finally, the call came and we gave Jenny a hug and off she went for her ‘instruction’, feeling extremely nervous, but in no way was she going to back out. We, the onlookers, went outside to the car-park to watch Jenny’s descent. We watched two others before seeing our Jenny and were able to pick her out by her colourful jacket. She made good progress, with the wind catching her once (in the same spot as the previous person) but soon Jenny was back on track and finished her abseil. We went back inside to greet & congratulate her, glad to be out of the bitter wind, Jenny was as warm as toast and vowing "never, ever, doing anything like that again!!" Jenny certainly did so very, very well, especially as she is petrified (not just terrified) of heights. Jenny raised £830 for the Pituitary Foundation and a little bird tells me, she raised the most. Well done & congratulations Jenny, Ray & I were so pleased and honoured, to be there to support you - Pam PS - Since writing this, I’ve heard that the Guildford & Surrey group have sent a cheque to Jenny (post abseil sponsorship !), for £25. Challenge 2003 Lord Nelson Voyage -- 22nd September to 27th September. It had been hoped that David Hill from Salisbury would be able to take the Pit Pat Challenge voyage but that was not to be so Tony Emm joined me for the voyage at short notice. We joined the Lord Nelson in Southampton around midday on the Monday. She looked quite tiny compared to the cruise ship Aurora moored nearby but much more welcoming. We sailed late afternoon having completed our safety drills, met our watch mates and been introduced to the permanent crew. The weather was wet and a little windy. We were all hoping it would improve. We dropped anchor for the night off St Helens. I had been assigned to mess duty until 5pm the next day so was excused watch, which meant I got to sleep through the night without being disturbed. Mess duty involved laying table for the other crew, handing out the meals and drinks, collecting and washing the dishes and clearing up as well as helping the cook with preparation etc. Not too bad really. We raised anchor about 9ish the following morning and headed towards the Channel and Cherbourg. The east coast of the Isle of Wight looked wonderful in the sun as we passed, setting sail in the favourable wind. By mid morning however the effects of the "confused residual swell" (that’s what the Captain called it!!) started to affect most of us -- the Purser was kept busy handing out Qwells and re-assurance. Suffice it to say not a lot of lunch was eaten that day. That evening we dropped anchor in the sheltered outer harbour at Cherbourg for the night. Most of us were recovered and ready for our meal and a drink in the bar. Tony and I were not required for watch that night so another uninterrupted night’s sleep. Early Wednesday morning we motored into the inner harbour holding up all the rush hour traffic as we passed through the swing bridge into the basin next to the town. There was much local interest as we tied up and set about the various cleaning duties that feature each morning. The weather was glorious and together with several others I took the opportunity to go aloft (loosely translated means climb the rigging with trepidation). The experience was well worth it. We all went ashore for lunch and the rest of the day, taking the opportunity to sample the local hospitality and undertake a little shopping, mainly goods of the alcoholic variety. After a restful night we set sail early Thursday morning, nicely timed to upset the traffic flow once again. I wonder why they didn’t wave back! Another glorious day and with much calmer seas and another favourable wind, we set sail and headed back across the Channel. Yours truly did a stint at the helm and managed to miss all the other shipping that was plying the waters out there. After stowing the sails, for which some of the crew went aloft and out onto the yardarms in traditional style, with dusk descending, we finally came to anchor in the Needles Channel for the night after a good crossing. The following morning we headed up Southampton Water to our berth and a welcoming party of families and friends after a very enjoyable trip despite the "confused residual swell"! I know I speak for Tony as well in saying that we had a very enjoyable voyage, almost a half of it under sail, we met a lot of interesting people and learned a little more about ourselves and what we can do if we set our minds to it. Thank you to all those who supported us and raised the money to pay for the trip, we really appreciated it. As I have said before we all need to challenge ourselves to find out just what we can do. I shall certainly go again! Thanks again, Brian Avery My Story - Georgina My story starts in 1993, the year of my fortieth birthday. I had two young children (8 & 9), was working full time and living about 10 miles out of Leeds with their father (Ian). Early that summer I began to experience a slight ‘shadowing’ at the corners of my vision. I didn’t attach too much importance to it at the time as although slightly disconcerting, it certainly wasn’t causing me any problems. By the time I got around to making an appointment at the opticians it was August and although I was still not unduly worried, the greyness was definitely spreading. My optician did all the standard tests and also checked my peripheral vision. This showed enough abnormality for her to refer me to my GP, who in turn referred me on to a Neurologist at the local hospital. By the time my appointment came through my anxiety levels were rising. My sight seemed to be deteriorating fairly rapidly, furthermore we had done some investigation into the symptoms (Ian was a trained nurse working in Leeds) and a strong contender was a pituitary tumour. A further appointment was made for various examinations including an x-ray and CAT scan to determine if there was any sign of a tumour. Within a couple of weeks I was back to see the consultant for the results. In view of everything that followed, I will never forget sitting opposite him as he said to me "well the one thing I can categorically assure you is that you do not have a tumour". Although this was apparently good news, I was still no further on in finding out exactly what was causing my sight problems. The next three or four months turned into a nightmare for all of us. My sight continued to worsen, at each visit to my optician she increased the strength of my prescription. The Neurologist arranged further tests. This turned out to be more and more stressful and frustrating - every time I went for tests there was a wait to get the appointment, another wait to get the results, and a further wait for new tests to be requested as each of them failed to produce conclusive results. I had the distinct feeling that no one knew what was causing my problems and had a strong sense they were just waiting for more obvious symptoms to develop. By November I had to give up driving and in order to read used a magnifying glass as well as my spectacles. I was feeling generally more and more unwell, nothing specific, but I often felt quite sick and faint, and sometimes so exhausted that I could hardly drag myself around. All this while still working full-time and trying to ensure that our children were exposed to as little of the stress as possible. Eventually we asked if I could be referred to the Hospital where Ian worked. As part of the transfer of my care, the initial x-ray and CAT scan (taken all those months previously) were reviewed. I was at work at the time in Leeds, when I got a call from Ian at the hospital – the consultant radiologist had reviewed the original x-ray and scan results and had spotted signs of a tumour. He wanted me to go in immediately for an MRI scan. I was there and scanned within a couple of hours. There was no doubt, I had a pituitary tumour (and by that time it was quite large). At first the consultant wanted to admit me immediately, however he agreed to let us go home to collect the things I’d need for my stay and to give me time to talk to the children about it. We had to return to the hospital that evening so that I could be prepared for surgery the next day. The next 24 hours passed in a bit of a haze. I remember the surgeon coming to explain to us how he would operate by going through my nose, he also explained that as the tumour had gone undiagnosed for so long, there was no way of knowing what result the surgery would bring. It was possible that my optic nerve had been so badly damaged by the pressure that there would be no improvement or even a worsening of my sight, alternatively when the pressure was removed the optic nerve might recover, though to what extent was unpredictable. To be honest by that stage I think I was so relieved to at least know what was causing it all, I was just glad that something was being done. I was very fortunate, I awoke from the anaesthetic and knew immediately that I’d got the best result possible. My sight was to all intents and purposes back to normal. I hadn’t realised, but I’d also lost a lot of my colour vision over the previous six months, and suddenly not only could I actually see things again, but everything appeared in really vivid colour (I’d just got used to my world consisting of muddy grey indistinguishable shapes). When the surgeon came to visit the next day, he explained that I’d had something called a Craniopharyngioma, a non-malignant tumour. Removal of the tumour meant that I was likely to have lost most of my pituitary function. I should have been in hospital for 10 days, however it was Christmas and I was allowed an early discharge so that I could spend Christmas day with my family. I have to say I spent most of it in bed and was eternally grateful to Ian’s mum who took over responsibility for organising everything. I did make it down for lunch, but that was about it. The following weeks and months were a period of adjustment for all of us. I managed to get back to work after about 6 weeks, the consultant endocrinologist worked with me establishing the best level for the medication I now required. I was taking Desmopressin nasal spray, Hydrocortisone and Thyroxin tablets, HRT patches and latterly Testosterone implants. Everything seemed to be heading in the right direction. Then in the April, less than four months after my surgery, we were out one Sunday, walking with the children at Bolton Abbey. Ian and I leant over the river and he was pointing out fish to the children. He looked across at me and just said quietly "you can’t see them can you?" I had to agree, I think I’d been trying to convince myself over the previous few days that it was just my imagination that my sight was going again. I had also been experiencing headaches for about a week, but had put it down to worry about my father who had just been diagnosed as having terminal cancer. We rang the hospital the next day and I was admitted that evening. This time though I was far more scared than before, probably because I’d not had those months of feeling so ill. However again my surgeon operated very successfully. He explained that I had something more unusual than the Craniopharyngioma they’d thought it was, in fact I’d a Rathke’s Pouch. This is more cyst like and because the first operation had failed to remove every piece of tissue, it had re-grown, filled with fluid and once again put pressure on the optic nerve. I recovered from this second operation much more quickly and was back at work within a couple of weeks. I’m pleased to say that I have had no further recurrences! Over the next few years, although I could function reasonably well, each time I saw my endocrinologist, I would say the same thing. - I found it difficult to concentrate, had put on a lot of weight (over 2 stone) often felt unnaturally tired and just somehow, not quite up to scratch. About four years ago at his suggestion, in addition to the medication I was already on, I began Growth Hormone Treatment. Almost immediately I noticed the benefit. The huge dips in energy levels I’d experienced (which would just happen with no warning and for no apparent reason) disappeared. I found my stamina increased markedly, I began swimming again and could take more exercise without feeling completely exhausted. It became easier (slightly!!) to control my weight. My whole quality of life improved. Ten years down the line (is it really that long!!), I am still working full time, but now in the Information Technology department for the City Council, so a very demanding environment. I’m a single parent (Ian and I separated about six years ago), my children are in the throws of A levels – my life has certainly not got any quieter or less complicated, but I have to say I don’t think anyone who met me now would ever guess that I was Pituitary Deficient!! So my advice is – stick at it, ask questions, if a medication doesn’t seem to be working or is making you feel worse, tell your doctor!! He or she can only help if you let them know what is happening for you. Find out all you can about your condition, sometimes even little things can make a difference -(like the best time of day to take your medication). Enlist support from wherever it is offered! Pete Barker has sent me a couple of things to put in the newsletter. First is the "Message in a bottle scheme" An excellent idea promoted by the lions where people with medical problems keep their details on a standard form in a green bottle in the fridge. The emergency services will be alerted to the bottles existence by two special stickers, one placed by the main house entrance door and the other on the fridge. Bottle kits are available from local chemists, health centres, doctor’s surgeries and at our Xmas party on the 3rd December. All costs running the scheme are borne by the local Lions clubs, (Donations welcome). Details available from your local Lions: Southampton Lions 02380 770193, Portsmouth Lions 02392 321847 and Pete Barker 02392 791554. There will be a race evening 7 P.M on Saturday 17 January 04 at the Florence Arms Florence Road Southsea. First of 8 races 7.30 pm with compare, tote betting raffle and licensed bar. The £6 ticket includes buffet. First we need 8 sponsors. Sponsor a race £50. You will get 2 free tickets your name or business on the race card and prize. Name your horse and owners name 8 runners in each race. £5 each owner in race. Owner winner gets prize or own the whole race for £35. . Tickets and further details from Mr Peter Barker, 14 St Albans Road, Southsea PO4 9AU. Tel: 02392 791554. Make cheques payable to Portsmouth Southampton & Isle of Wight Pituitary Foundation Support Group. Come along and have a good time while raising much needed funds at the same time. Happy Christmas and healthy New Year to you all, Nick. Newsletter Seven - 2004 Hi all and Welcome to the spring edition of the Newsletter. Driving to work the other morning whilst caught up in the daily mad rush to escape Gosport, I noticed an open field with wild deer grazing. So that evening I looked out for them again! And yes there they were. I have seen them most mornings and evenings since then. The strange thing is, this is a field I have passed on a route to work I have used probably thousands of times before and yet never noticed them. The daily queue out of Gosport doesn’t seem quite so bad any more. Sorry there was not enough notice to let you all know, in Gosport, Thorngate hall, there was a hand made card exhibition and demonstration. Jenny was there with a selection of appliqué cards she made and also a board displaying Pituitary Foundation literature. The sale of Jenny’s cards, donations from other table holders and the sale of stock donated by Pat and Tony raised £215. Thanks to Pat and Tony of Stoke Rd Art Gallery, the organisers of the event, for their hard work and generosity which made this possible. The event was so successful another one is being planned for later in the year. I’ll keep you posted. Also, one of the suppliers has shown an interest in Jenny’s cards and has asked her to make a quantity to display and sell at the big stitch show at Alexander Palace in the autumn, all profits from the sale of Jenny’s cards to go to the Pituitary Foundation. Also, a quick thank you to everyone who provided input for the Newsletter. If it was not in this edition check out future issues. – Nick Allen nick_12@ntlworld.com Hi all, Gail here, Oh dear, it’s been a busy week with a Patient Focus meeting with Bridget, Peter Lees Neurosurgeon, Brian & Ann Avery (our ex chairman), the Bushens from Salisbury and others. I then managed a full day in my office in Midhurst on Tuesday and then Wednesday, I accompanied a Guildford & Surrey group member to the pituitary clinic for a little moral support. I was so glad I made the effort because, although the outcome would probably have been no different, it helped him feel more positive and less worried about leaving his consultant without having all of his concerns addressed. As it happens it all went excellently, and Jeff is a happier chappy. Today’s been non-stop in the office with the National Conference in Reading fast approaching (have you registered yet folks?), and I’m really wondering if my stamina will allow me to travel down to Brighton for my Greek language evening class. It’s looking doubtful ‘cos I’m feeling weary and as Mum and I will be setting off for Crufts at the unsociable hour of 5.30 tomorrow morning, more & more unlikely as this afternoon progresses. I’m not quite sure why I’ve rambled on like this, but Nick’s asked for my input for the overdue (my fault) newsletter and I was thinking how I must do it before the weekend and why the hell hadn’t I put fingers to keyboard before now? But, having put down the reasons above, I know why I haven’t. Does that make sense? Probably not! Anyway, we hope to welcome you along to our 8th Birthday party on Saturday 27th March at 10am when, as well as welcoming Joe Hinder from the Alzheimer Society talking to us about memory loss, we will sing Happy Birthday to ourselves, eat & drink slavishly, have a chin-wag and a laugh as well as the usual raffle. So good people, fine fayre and prizes will be very welcome please, along with your good selves. Last time we held a Saturday meeting, it was great to meet new faces & no-one was as tired and rushing to get home to bed. Future dates are 30th June at 7pm, when we hope to welcome back Dr Sandeman (TBC) for a Q & A session, 29th September & 11th December both also at 7pm. At the Christmas get-together we will be running another Bric-a-Brac stall, which was very well received at the end of last year. Going back to the National Conference in Reading on 24th April – will we see you there? It’s a great & nearby opportunity to learn more about pituitary stuff, meet and chat to fellow patients & carers & tuck in to a free lunch!! We are hoping to provide a minibus (TBC) for transporting people between the railway station and the conference. If you are considering driving, there is ample car-parking at the venue. There are several different workshops/presentations this year, which promise to be very interesting indeed. Mum’s asked me to say thanks to those of you who have donated stamps so that you can receive a copy of our local newsletters. However, as that time of year approaches when we need to request more st