2012
I have always thought that Christmas updates had little use from our point of view. Most years are similar, we work, we rest, we go on holiday (sometimes to exciting places), our health is sometimes a problem, but we get by. Who wants to know about our side of things when we are all having similar experiences?
This year has been somewhat different to all the “normal” years of our life. It all makes depressing reading so read no more if you do not want to hear about our year.
The first two months were pretty normal, winter is a drab time in the UK but we went on holiday for a week to Bournemouth. Nothing unusual happened that week other than the weather being kind, but the holiday was as expected, relaxing and uneventful.
We had already booked our holiday in March to go to Newquay in Cornwall. Things were looking good, I was continuing to recover from the procedure that I had done to my ear in August 2011, I could now walk albeit very slowly and with assistance, but not very far. We staggered our journey on the way down, visiting a couple of National Trust properties. The first week was good. On the following Sunday (the start of the second week) we had a good day visiting Pendennis, Falmouth, Truro, Trelissick and Charlestown. It was a nice day. On the night in the hotel, Val came all over funny experiencing some kind of hot flush which disappeared as quickly as it started.
On the next morning we went for a walk on Newquay beach, down the cliff path onto the beach and round past the rocks onto the next beach. Val didn’t feel very well and suggested we retrace our steps, which we did. By the time we got to the foot of the cliffs Val was breathless and said she could walk no further. Suspecting a heart attack I phoned for an ambulance which took us to Truro hospital. In the emergency department they ruled out a heart attack but a blood test and an x-ray revealed that she might have pulmonary thrombosis. She stayed in overnight and a CT scan the next day showed an 11cm mass centered on her right adrenal gland. I was mortified and panicked when the doctor told us.
We contacted our two daughters Lynette and Heather and the next day they came to fetch us. Lynette went to Heather's on the train and Heather drove Lynette to Newquay where she stayed the night and drove home the next day. In the meantime we had arranged for Lynette to be insured to drive Val’s car home with Val and I as passengers.
The next day we visited our GP presented him with the discharge papers from Truro Hospital and he arranged for an appointment seven days later with urology at Good Hope hospital. Val was not good all week, whenever she moved she became breathless so she stayed in her recliner all week and I looked after her (the shape of things to come).
The following Thursday we attended Good Hope hospital where we saw a urologist. He explained that the tumor had entered her inferior vena cava and was invading the right atrium of the heart. He telephoned The Queen Elizabeth Hospital and arranged for Val to visit the CDU department immediately. Two hours later Val was admitted to the urology ward where they arranged for her to have a series of tests and scans. Over the weekend Val’s condition deteriorated until she had to be put on oxygen to maintain her blood oxygen level. We were told by the surgeons that she would need to have an operation to remove the tumor but because it would involve surgeons with different specialities it would probably have to be the following Saturday. As it happened the scans and the tests were done and on the Tuesday they decided that she needed an emergency operation. We were told that she had 48 hours to live if she didn’t have the operation. This took place on the afternoon and night of 3rd and 4th April. A twelve hour operation to remove her kidney and adrenal gland, remove the tumor from her inferior vena cava and heart, this involved five surgeons who worked on her at the same time.
We all thought that she would not recover from the operation and we spent the night thinking the worst. But she did survive. The next week she spent in intensive care and the following three weeks recovering in a cardiac ward. They discharged her on 4th May five weeks to the day and hour when she was first admitted. She was very weak when she came home her muscles had disappeared in her legs and arms and she had lost 21 pounds. Val sat in her recliner most of the time until July with me doing my best to look after her.
Visits to the oncologist and endocrinologist coupled with various scans and tests revealed that Val's cancer was called phaeochromocytoma, it was very rare and it had spread around her body. She had tumors in various places in her cranium, liver and lung. After Val had started driving again we talked ourselves into buying an MGF as a “toy” to boost both our spirits. We managed to find an automatic one which was really cheap. We were at first worried about its condition but it remains to be ok some six months later, what you might call a good buy.
In July miraculously, Val was able to take us on a five day break to Portishead which gave us both a lift. She was regaining her strength gradually but was very slow in her movements compared to before the operation. It was decided by the oncologist that she should have MIBG treatment. The treatment consists of an injection of radioactive iodine and a stay in hospital for at least five days by herself in a lead lined room.. The treatment was booked for 19th September. During August we visited our GP to get some help for me. The GP prescribed some happy pills for me and referred me to the CPN practice in Tamworth and Val to St. Giles Hospice. The CPN actually discharged me as the feelings I was getting were actually normal for a person in this situation, the St. Giles nurse visited us and has become a “professional friend” giving us help and practical advice. During the process to get the funding for the MIBG treatment, Staffordshire PCT actually turned down the funding, which had to be obtained from the West Midland Cancer Fund. So the funding was in place, the treatment was booked and all was well except for the dramatic effect the medication was having on Val’s well being. Doxazosin was prescribed by the endocrinologist to prevent her blood pressure from rising due to spikes in her adrenalin levels because of phaeochromocytoma. The tablets really messed with her head. She became very slow in the morning taking all morning sometimes before she could get up and move around.
We had previously booked a holiday in Lytham St. Anne’s for the first week in September which fitted in nicely with Val’s treatment date. We had a good week, the sun shone pretty well and we were able to drive round in the MG mostly with the roof off.
Val was due for her treatment on Wednesday 19th September. On the 17th we went to see the lead lined room and to be talked through the procedure. All was well until the afternoon of the 18th. A phone call from the nuclear surgery department informed Val that her treatment for the next day was cancelled due to fault in the reactor (in Germany) that produces the radioactive iodine. The MIBG treatment was booked for five weeks later on 24th October. Val broke her heart; this was the defining day when her health started going downhill. Visits to the oncologist revealed that nothing could be done to bring the MIBG treatment forward. Further scans and visits confirmed that Val had tumors in her skull bone and that the tumors were pressing on the brain. Additional medication was prescribed. Then the wait began. Caring for Val became more difficult, her strength was falling very slowly, day by day. She was eventually admitted for the MIBG treatment on the due date. On the day after the iodine injection the pain started in her hip and gradually got worse. She was discharged the following Monday from the hospital, she was still radioactive but with precautions she was able to come home. I took up my bed and walked into the next bedroom, where I have remained. The pain got worse. On the Wednesday the GP prescribed stronger pain killers which had little effect. On the Friday morning I got my driving licence back. On the Sunday morning Val was hysterical with the pain, I called the out of hour’s doctor who prescribed some different pain killers. At 2:00 am on the Monday morning Val became hysterical with the pain once again. I took her to A & E at the Queen Elizabeth. After four hours wait Val was given some different pain killers. They didn’t work. The next day (Tuesday) Val had an appointment with the oncologist. She was sick on the way to hospital, was writhing in agony waiting for the appointment and was sick once again. Some heavy duty pain relief was prescribed which at last worked. Val was booked in for an MRI scan. She was sick on the way home.
The pain relief Zomorph has played havoc with Val since that day, she can now only walk with support she is constantly drowsy and has some confusion. Since that day Val has had the MRI scan, which was followed up with radiotherapy on the tumor on her spine and on the seat of the pain in her hip. She is eating small amounts of food and is often sick. Following her last visit to the oncologist Val has had the Hospice at Home team and the district nurses visiting her every day. We are not sure whether the MIBG treatment or the radiotherapy has had any effect on the tumors.
This week (28th November) Val has been admitted to St. Giles Hospice for respite. The help she has been getting from the At Home team and now she is in St Giles has taken all the pressure from my shoulders but now I feel somewhat lost, empty and guilty that it has come to this. I suppose I shall get used to the feeling one day. It is difficult though. When Val and I first met in 1963 she was sixteen I was eighteen. We have been together since then. From my end I have been very happily married. Val is the perfect spouse, soul mate, friend, companion, mother and grandmother. She is also a saint for putting up with me for all those years; it must have been difficult at times. She has a great sense of fair play and throughout this year has maintained a level of optimism and cheerfulness which I find difficult to comprehend. A constant source of joy to both of us has been the achievements of both our daughters, their husbands and of course our four wonderful grandchildren. Let’s hope we find a miracle cure soon for all their sake's.
Allen
Update 10th December 2012 The team at St. Giles have done their magic. Val seems now to be pain free, so the medication is working at last. She is still sick from time to time but seems to be coping with that. The massive lumps on her head seem to be shrinking but she is still having the mini seizures on her face and with her vision. She hopes to return home on 13th Dec, later this week. I must admit that I am anxious as to how she will be but she will have the full St. Giles care package plus help from the district nurses. Val is due to see the oncologist on Monday 17th and the endocrinologist on Wednesday 19th, hopefully we shall have some encouraging news for Christmas. Until then a day at a time. Allen
Update 20.25
13th December 2012
Not such good news today. Val was unable to come home. She collapsed this morning and following discussions with the Doctor, Val decided to stay in the hospice. She is not very well. The doctor is going to speak to the oncologist to see if he (the oncologist) wants to see Val on Monday. There was no further news at the time of writing. We will see what tomorrow brings.
Allen
28th December 2012
Val made it home from the hospice seven days ago. They stopped giving her the doxazosin and her head cleared a lot. She has been at home now a week. We have had to have a bed downstairs, we are having care workers four times a day plus a daily visit from the district nurse. Our GP has visited Val twice this week. She has lost a terrific amount of weight, but is still managing to get to the toilet by herself using a walking frame. Sometimes she sleeps that deeply though when she wakes up she is desperate to get to the toilet and has to use a commode. Her speech is now slurred all the time and her eyesight has deteriorated. Occasionally she seems to get dreams mixed up with reality. Even though she has a pump attached injecting her with regular doses of an anti sick drug, she is still being sick with lots of green fluid coming up. She is eating very little. What she has eaten in the last week I would consume in one sitting.
Allen
