Blog Continued 5 March 2017
I am not very good with keeping this Blog up to date am I?!
Life gets in the way. So many twists, so many turns and being a member of the Cornwall Bowel Cancer Group, we can`t help but becoming engaged with many other`s cancers and their lives, and how they deal with them.
Fatigue and lethargy, as I have talked about before, are difficult symptoms to deal with. They limit the activity in our daily lives to where we do the essential first and anything else we wish to achieve, which at times can be more important really, gets pushed into the background, gnawing away at the consciousness permanently. Just as we ride out one crisis, perhaps our own ill health and its treatment, if we have family and friends as most do, we try to do our best in their lives too when things go wrong for them. No one has an easy life, some easier than others, but we all have our doubts and ponderances over personal challenges with work, family and health.
The Blog I had begun, on cornwall-bowel-cancer-group.co.uk, took me up to October 2015. It is now March 2017. It had ended with the story of the jaundice, the return of the cancer, and replacements stents for the bile duct. I learned that I could not restart chemotherapy until the jaundice which was still in evidence, yellowing the eye whites and the skin too, was completely out of my body.
On the 12th October I began my 4th chemotherapy course of treatment. Previously, I had undergone treatments lasting 3 months at a time given at two weekly intervals, followed by surgeries to remove the shrunken tumours in the liver, in 2009, 2010 and 2012. This chemotherapy was to take place once a fortnight and was to be continuous. It would be my life line, as surgery was not an option this time. It was just too dangerous to operate because of the location, the tumour being attached to the bile duct, lying deep in intricate channels within the liver.
I am lucky in that the chemotherapy has always worked extremely well on me. Chemotherapy, along with the surgeries, has given me almost 9 years since the symptoms began in 2008. I have learnt a lot in that time. I have found that with cancer patients, they either want to find out everything they can about their illness, and take some kind of personal responsibility and control along with the oncologist, or some cannot cope with that kind of information, they don`t want it. They place all their trust, faith and health in the hands of the medical profession. I have learnt that this is not the wisest thing to do always and I question everything until I am satisfied. We all deal with what life throws at us in different ways, there is no right way or wrong way to react with cancer. What is right for one is not right for another. Some people “freeze”, I am more of a “thrasher”.
I started this new course of chemo with infusions of Oxaliplatin and Avastin, along with Capicitabine in pill form. My body did not like the Oxaliplatin, it never did before in 2009, though I had completed the whole course in 2009, after the drug was reduced in amount. This often happens and the oncologist can regulate the drugs until you can cope with the side effects more easily. Some people deal with it better than others. I was fairly laid low with it, nausea, loss of appetite, diarrhoea, constipation and the deepest fatigue and weakness, you could imagine. I spent a lot of time in bed, sleeping and resting quietly. It was the only way I could deal with the side effects.
Some people carry on working on Oxaliplatin, one of them was not me. After 2 treatments, I asked the oncologist if I could have a break from the Oxaliplatin. It was so fierce along with the side effects of the other drugs, I knew I was not coping as I should be. He agreed and said if the treatment worked with the two drugs alone, I could stay off Oxaliplatin, but I was willing to go back on it if need be. There are times during treatment when all your reserves of courage and strength dissipate, when side effects are so extreme and the mind and body are pushed to their limits, that to know what your limits are is important, but courage is similar to a muscle, the more it is put to use, the more efficient it becomes. I believe that courage can begin in a small way, along with hope, then with knowledge and medical support it grows into a natural habit.
With cancer treatment, it is no easy ride and some are fortunate enough to manage to cure the cancer with perhaps one chemotherapy treatment and one operation, though I feel that is often not the norm. Patients tend to be diagnosed in Stage 2, 3 and 4 in the majority. Only 9 in a hundred patients are diagnosed at Stage 1 colorectal cancer.
By Christmas, I was fairly under the weather having loss of appetite, diarrhoea, constipation and fatigue. The hard thing about this treatment is knowing that I will be on it, for as long as it works. Recently the oncologist did say that a new drug is out now for NHS cancer patients called Trifluridine-Tipiricil, so there has appeared another light at the end of the tunnel.
Christmas was difficult though. You have to go into overdrive for that short festive period, persevering to enjoy the spirit of Christmas along with the rest of them. The answer, I found was to have regular intervals of rest, naps and sleep throughout the days. Nobody minded.
I had 3 months of chemotherapy and then a CT scan to check whether the treatment was working, and it was. So I carried on with the two weekly sessions. As time has gone by the side effects have reduced somewhat or I have adapted to them perhaps.
The Capacitabine pills were reduced slightly, as one of the side effects of this drug, is foot and hand syndrome. This is where the skin on the palms, and the bottoms of your feet goes dry, cracks, splits and peels. I asked why it only affects these parts of your body, and the oncologist said that they are the two parts of the body which have the most sweat glands – hence sweaty palms and smelly feet!
At Christmas too, Phil`s mum became ill with a severe chest infection, which lasted into February. She was given antibiotics but when it lingered, her doctor commented that he had expected it to be hard to get rid of. He saw her on a home visit on 9 February 2016.
By 24 February, two weeks later, MIL, (I will call mother in law MIL) had developed a urinary tract infection, (UTI in short). MIL was normally a buoyant and fit lady for her 90 years, mainly visiting the surgery to undergo a blood test so that her hypertension (high blood pressure) and cholesterol could be managed. Now we realised that MIL had experienced two UTIs, one in October and one in November 2015. This was unusual for MIL. This new UTI did not appear to be responding to the antibiotics. MIL was prescribed antibiotics on the 24 February.
MIL was prescribed different antibiotics on the 11 March and again on the 16 March, then the 1st April, followed by the 12th April and the 21 April. Again MIL was prescribed antibiotics on the 4 May and the 16 May. So it was that MIL was prescribed various antibiotics at the rate of one to two weeks, but the UTI still persisted.
At the same time MIL was increasingly suffering from gastric symptoms – Heartburn, reflux, abdominal bloating, indigestion, burping, belching, nausea and vomiting. Of course MIL was losing weight rapidly now. She was permanently weak and fatigued.
In 2015, MIL was 15 stone which had been her weight for years. By the 16 March she was 12 stone 8 pounds. By the 18 April MIL was 12 stone 2 pounds. MIL was constantly fatigued and pale. She ate little, mainly plain biscuits and thin slices of bread. She didn`t drink enough as the gastric symptoms increased with eating or drinking.
MIL became housebound, dependent on us and her cleaner, who visited once a week. We went to see MIL nearly every day from Christmas onwards. We were worried about MIL. We lived a 30 minute drive from MIL, so the travelling and visiting took up a large part of most days. We were concerned and felt compelled to go, as Joyce had no other children at all, nor family nearby. We shopped, paid bills and took her to the surgery. More importantly we gave her companionship, helped keep her spirit afloat, and watched her very carefully.
We did all we could to get attention from the General Practice. MIL saw a range of different nurses, she was normally directed to a nurse clinician because of the nature of the complaint being a UTI, though she was also directed to a nurse in the first instance with the chest infection. She also saw various GPs throughout February and March, and only saw her named GP when she insisted, and then she had to wait for 3 weeks.
A UTI requires urgent treatment. MIL could not wait to see her named doctor. MIL saw nurse practitioners or other GPs in the main. There seemed to be nothing joined up about how she was being treated. It appeared that no one at the Practice talked to each other, and MIL was treated in a piecemeal way, by a succession of various medics.
Eventually I began writing lists of the gastric symptoms and the concern we had for the unresponsive and persisting treatments for UTIs. My husband made sure they were passed to the GPs and he made a point of getting them placed in the medical records. We hoped that somewhere along the line a medic would examine the notes and see that these symptoms had been carrying on for far too long. asked them to be placed in MIL`s medical records. The one GP issued MIL with Omeprazole, a treatment for acid reflux and excessive stomach acid. Two days later on 18 March the same GP referred her to her named GP. MIL saw the named GP, 3 weeks later. This was two months since they had seen MIL at the beginning of February. It was now the 5 April.
This GP was given a similar list of symptoms detailing gastric problems ongoing since Christmas, along with unintentional weight loss, and recurrent UTIs. We emphasised MIL`s deep fatigue and lethargy, that she was virtually house bound now and had been since Christmas. The GP could offer no explanation for the range of continuing gastric symptoms but thought the persistent UTI`s were evidence of a kidney problem. He would see her in a month`s time, after stopping all her normal medication, for the results of a blood test. If things had not improved they would refer MIL for investigation to a urologist.
It was now five and a half months since MIL`s UTI`S had begun and over three months since her gastric symptoms had taken over normal eating patterns. The omeprazole did not change the symptoms at all.
Of course MIL had to see a GP before a month had gone by. MIL saw another GP three days later. MIL was worse, weak, shivering and shaking. She began vomiting. MIL was to have an internal examination at the General Practice on the 12 April. My husband took his mum as always.
Discretely, my husband handed a piece of paper with MIL`s medical, family history to her named GP. MIL`s mother and father had died with stomach or bowel cancer, her sister had died with bowel cancer. We did not think that Joyce had bowel cancer as she had no obvious symptoms such as rectal bleeding, a persistent change in bowel habits, either diarrhoea or constipation or both, for more than 3 weeks, severe abdominal pain or rectal pain, and a feeling of not having emptied your bowels completely, though MIL did have unintentional weight loss. We had formed an opinion by early march that MIL symptoms could possibly be of cancer, but we were not sure which one. We never spoke of our fears to her, but we believed she must have been thinking the same, herself. I investigated on the internet on the Macmillan and NICE websites. The conclusion that we drew from information on these sites was that she possibly had stomach cancer.
Macmillan stated that the symptoms of stomach (gastric) cancer are :
I. Heartburn or indigestion that doesn`t go away.
II. Burping a lot
III. Having no appetite.
IV. Feeling full after eating only a small amount.
Other possible symptoms are :
1. Pain in the upper tummy area.
2. Losing weight.
3. Being sick.
4. Difficulty swallowing.
5. Blood in stools.
6. Feeling tired and breathless due to anaemia.
The NICE Guidelines for stomach cancer investigations are :
Offer urgent direct access upper gastrointestinal endoscopy (to be performed within 2 weeks) to assess for stomach cancer in people with :
1. Dysphagia (difficulty in swallowing.)
2. Aged 55 years or over, with weight loss and any of the following :
3. Upper Abdominal pain.
4. Reflux (stomach acid being pushed into the throat and mouth.)
5. Dyspepsia ( deranged or impaired indigestion) such as: Painful, difficult or disturbed digestion, which may be accompanied by symptoms such as nausea, vomiting, heartburn, abdominal bloating and stomach discomfort, belching, and feeling full quickly after eating or drinking small amounts.
The named GP looked at the list of family medical history of MIL, which my husband had passed to him, and said nothing.
It was the weekend of the 18 April. We had arranged months before to travel to London for the Bowel Cancer Patients` Day. Everything had been booked. MIL`s niece and nephew came to stay near her, for the weekend to look after MIL. We travelled on the Friday after visiting MIL on Thursday afternoon. MIL`s relations arrived at 10 o`clock on Friday morning. We arrived back from London on Sunday afternoon and went straight to see MIL. Apparently on that Friday, MIL`s feet and lower legs had swollen up and she could not walk unaided. Our relatives had arranged for MIL to see a GP via the 111 support system. On the next day we made an appointment for Joyce to see another GP, her named one was on holiday. We were pleased. MIL had not seen this GP. I wrote a letter again, detailing all MIL`s range of symptoms and stressed that we thought that MIL was suffering from something serious and that she must be investigated. By then the 20 April, MIL weighed 12 stone 2 Ibs and was now anaemic. That is a 3 stone weight loss in a few months. We took MIL home with us that day as she could not have coped any longer alone at home, now with mobility issues on top of everything else.
MIL was given a 2 week urgent referral and she saw a gastroenterologist. This specialist, whom I had written a detailed letter of the background and symptoms of MIL`s, concluded that MIL required a CT scan. He thought an endoscopy for a weak and failing 90 year old was not appropriate. The gastroenterologist asked MIL questions, “Had she still got her ovaries?” MIL replied that she had never had an operation and had only been in hospital once, at the age of 5 years when she had pneumonia. A ca125 blood test for ovarian cancer was undergone also. The gastroenterologist then concluded that MIL`s symptoms could be the symptoms of several conditions, from benign stomach ulcers to abdominal cancer, ovarian, stomach, or carcinomatosis (multiple metastatic cancer tumours developed from an unknown primary, or vasculitis (inflammation of the blood vessels.)
He remarked that she must have been thinking of a cancer diagnosis by then, herself. She replied that with her family history, she was not surprised that it may be cancer. The gastroenterologist then stated that he thought that it was very possible that the cancer, if it was that, would be difficult to treat. Three weeks later, MIL was diagnosed as with multiple cancerous tumours in the abdomen, and the possibility of ovarian cancer was alluded to. They were unable to decipher from where the cancer had begun, as the masses were so great. The tumours were in front of the right ovary and also tumours attached to the appendix and pressing against the right ureter, the tube which takes urine from the kidney to the bladder, and the uterus (womb). This explained the continuous UTIs, which were untreatable. MIL was diagnosed one week before her 91st birthday. On her birthday we took MIL out for lunch with her niece and nephew. She managed a poached egg on toast, and that is the last time she went out. It was exactly a month since we had brought her home to stay. We cared for her in our home in our front sitting room, until she died on 25 July 2016. She and we, had wonderful support from the General Practice where she was transferred to, where we live. We had carers visit each morning and evening to help her wash and dress, and chat with her. They were wonderful. The GPs and District Nurses visited regularly. We could ask anything. MIL was supplied with copious amounts of care, appropriate medication, and the necessary incontinence ware which was now essential. MIL felt safe at last. She appeared to be peaceful, and knitted and solved crossword puzzles. She napped and ate miniscule amounts of food. She had what she needed, companionship, love, food, warmth, visitors. Most of all she felt safe. She eventually had Marie Curie Nurses on some nights in the week before she died, otherwise my husband slept on a mattress on the sitting room floor with his mum, in the last two weeks. It was relentless and tough work physically and emotionally, caring for MIL and watching her deteriorate. She was a very strong woman and kept trying until the very end. It was especially hard knowing that I too had cancer, but we were determined to care for MIL ourselves, as we think hospital is no place to die. Obviously if symptoms hadn`t been controlled at home well enough, MIL would have had to be admitted, but we were lucky and she wasn`t. My oncologist did not think it was a good idea to care for MIL in our own home. He thought it might be too stressful, physically and emotionally, but at least if MIL was with us, we knew that she would have the best care and she would be protected from any further questionable treatment that might arise. She had suffered enough.
It was a job well done and MIL passed away in her sleep peacefully as her son lay close by, in the early hours of the morning.
It is important to me to explain to you the symptoms of ovarian cancer as this was the most probable cause of MIL`s death. The symptoms according to the Macmillan website are :
1. GPs should offer ovarian cancer tests to women who have symptoms of bloating and any other symptoms below if they happen more than 12 times a month or continue for 3 weeks.
2. A long lasting bloated feeling in your tummy (having a swollen tummy)
3. Feeling full quickly, and/or loss of appetite.
4. Pain or discomfort in the lower tummy area and/or back.
5. Needing to pass urine more often or more urgently (feeling like you can`t hold on.)
6. Women over 50 who develop symptoms to IBS should see their GP for ovarian cancer tests. IBS symptoms include bloating and change in bowel habit. It is unusual for women over 50 to develop IBS for the first time.
7. All these symptoms can be caused by other conditions but it is very important to get them checked out by your GP.
8. Other symptoms may include, changes in bowel habit, constipation or diarrhoea.
9. Pain during sex.
10. Weight gain or loss.
11. Extreme or unexplained tiredness.
So this is how we spent our time from Christmas 2015 until July 2016. I carried on with my two weekly chemotherapy, for which a CT scan at every 3 months appeared to be working, in that the tumours appeared to be shrinking and the CEA marker blood test, continued to be stable. I had gone to the Patients` Day for bowel cancer patients on the 18 April, with the purpose of seeing a liver surgeon from Hampshire Trust to ask whether he could help me with my tumour on the bile duct. I had previously read about his work, and I had noted he would be giving a talk there and I was determined to question him. Mine was the last question he answered, I had purposefully sat on the front row, he couldn`t miss me. At these presentations people seem to congregate at the middle or rear of the auditorium. I think it is best to be at the front. Mr R. (I will call him that), the liver consultant replied that he would need to see a scan of my liver to make any judgement of what could or couldn`t be done. I said I would get one to him. When I next saw the oncologist I asked him if he would send Mr R. a scan, which he agreed to. The oncologist remarked that he knew the surgeon and had in the past referred bowel cancer patients to him for surgery. The oncologist then stated that he believed it was highly unlikely that Mr R. would be able to operate, as it was explained as before, simply too dangerous an operation.
Mr R. wrote :
“I was asked to look at your scans by your oncologist Dr N.
First of all congratulations on your extraordinary progress and your clear determination and fortitude you have shown since this tumour first presented in 2009.
The current situation is under control and I have to say I do believe Dr N. has done you proud with his excellent work. Unfortunately, surgery is not an option that is open to us at this stage but we are as ever always happy to have a look should the situation change.”
So there it is, but I will keep on trying, investigating and searching for anything which might help with the situation. I am not deterred easily and question everything now, whereby in a former life, I would accept everything a professional told me as wrote.
Throughout the end of July, August and September we were working towards tying all the loose ends after the funeral, the bungalow`s clearance and the Will to sort out. We took a 2 week holiday to the Lizard Peninsular, where we like to go. We had not been away for a year. The oncologist said I could have a 6 week break from the chemotherapy, to let the body to recover some strength. From then on till Christmas, my life followed the same pattern of chemotherapy every 2 weeks, but another problem kept arising. In May 2014, I tripped on my own front pathway and landed heavily on my left hip, breaking the hip replacement which I had undergone in 2008. It was shattered in three places. Unfortunately because it was a complicated scenario, being the week before the Whitsun Holiday and the fact that there were already parts of a hip replacement lying in my leg and hip, I wasn`t operated on for 9 days. I can honestly say it was the worst hospital experience and pain I have ever endured. I lay prostrate on the bed with the broken leg suspended. I had a catheter in, so that was alright. To sit up in bed was agony. As most patients understand, once you have been diagnosed with bowel cancer, the bowels have a life of their own. I have bowel movements at least 6 to eight times a day. You may imagine what it was like lying prostrate in a bed, left leg suspended with weights, and feeling pain at the slightest movement. t first I believed that the operation would take place the next day or the next, but it never did. It never occurred to the nurses who were there that I might need to pass a motion at some time soon. I ate as little as I could hoping that the operation would take place and I would be fully mobile again, so that I could use the toilet unaided. It never happened. I was in considerable pain by now and my husband and daughter pressed for more appropriate pain control. This eventually came in the form of steroid injections into the groin to accelerate relief. Sadly this did not prevent me soiling my own bed, with bowel movements I could control no longer. It was a humiliating and devastating experience. After that, the medics put me in a side room on my own. The operation eventually took place and when I left hospital, I sat in the wheelchair and cried. The nurses thought that I was sad to be leaving hospital. I was completely traumatised about the whole circumstances, the pain and humiliation which I had experienced. So now the hip which had been replaced and broken again never really settled down. I limped heavily and could not walk up and down stairs as one normally would. I saw the orthopaedic surgeon a year after the peri-prosthetic operation on the hip in April 2015. At this time I had been having clear cancer scans and to all purposes, the cancer was not evident. There had been a nearly a 3 year gap since the last liver resection in July 2012, with no sign of cancer. The orthopaedic surgeon remarked on a new X- Ray taken that day that one break in the hip had not calcified over as it should do. I asked if there was anything we could do about it. He said that there was a 60/40% chance of the bone re-healing if they did a bone graft on the hip. I said I would like that to happen as the hip pain and immobility were increasing as time went by. It was never going to heal by its own volition now. I never heard anymore from that surgeon, so my GP wrote a letter to him. I wrote a letter to him. They both went unanswered. This period brings me back to July/August 2015 when I suffered with jaundice and the liver cancer was diagnosed once more. We found out many months down the line that the surgeon had become very ill soon after I saw him and eventually retired though ill health. So as most people know we can`t have surgical procedures whilst being treated with chemotherapy. I asked the oncologist what would happen if a patient on chemo was involved in a car crash. He responded that they would have to be operated immediately if there were injuries sustained, such as broken bones, but that the healing would take months and months because chemotherapy has a detrimental effect on a healing bone and suchlike.
In April 2016 I saw a new orthopaedic surgeon, who stressed that he did not believe a hip revision would be a good idea for me as there were too many complications with my health otherwise and that these revisions sometimes did not work. Indeed he said I could end up worse than before. I carried on with the chemo throughout 2016, apart from the 6 week break, then just before Christmas 2016, the oncologist suggested that I try to get a hip revision done now. He said that my CT scans were encouraging and the CEA marker too, was stable. He said if I took a 3 month break from the chemo it would enable me to undergo a hip revision and then heal before going back on the chemo. A lot of patients apparently do this when the cancer has been stabilised.
So I began in mid- January when I underwent my last chemo treatment. The oncologist wrote to the last surgeon I had seen in the previous year and referred me. My GP referred me. They both stated the time sensitivity of the predicament I was in. I had an appointment to see the orthopaedic surgeon for 2 months later, the 9 March. The oncologist had emphasised that an operation should take place, as soon after the 10 March as possible. I guessed this was never going to be easy. I decided right away to pay privately to see an orthopaedic surgeon to investigate whether a hip revision or bone graft could take place at all. I thought it would be worth it to find out how I stood. I saw the orthopaedic surgeon on 6 February 2017. He examined me and said I needed a bone scan. He said I would get the scan done more quickly if I paid privately, to which I agreed as time was of the essence. First the referral letter from him to the Nuclear Medicine Department went missing, lost in the post, and then one of the two scanners broke down. So I now have an appointment for a scan on the 10 March, the day after I see the NHS orthopaedic surgeon.