We travelled up to North Devon Hospital yesterday for another oncology appointment. I have been on chemotherapy – Capicitabine and Avastin, almost constantly, paced at every two weeks, since last October, following a return of my cancer, after three clear years.
I underwent a CT scan about six weeks ago which revealed encouraging results once more. The secondary tumours in my lungs and the one next to the bile duct in my liver, had diminished again and there were no other signs of new cancer anywhere else in my body. This clearly demonstrates that chemotherapy is working well on my cancer. The side effects which are most noticeable and consistent, are diarrhoea, fatigue, skinning on hands and feet and breathlessness.
The oncologist has said recently that it was about time I had a rest from chemotherapy to allow my body to recover to its full strength – to give the vital organs a chance to rest and for the liver in particular, to regenerate and make good, as it normally, automatically does. I had agreed with him. I had longed for a chance to feel free of the side effects of chemotherapy and to not have to take the Capicitabine tablets, for nine of the fourteen days in the treatment cycle.
The oncologist remarked at the time, that the blood test revealed, because of the length of time I had received chemotherapy, that the treatment had begun to affect the liver. The liver was finding it difficult to renew its blood supplies, as it normally would do. Part of the way that Avastin works is to surround and smoother cancer cells so that they cannot set up new routes via new blood vessels to any other part of the body. Unfortunately, Avastin will affect normal healthy cells also, so it was time for a break. I had remarked that I had not felt so good at the time, so this explanation served well to make me understand why.
So it was agreed that I should have six weeks off chemo – but the oncologist said, seeing as I had travelled the long journey from Launceston, I may as well have another treatment that day, which I did. So I was looking forward to this reprieve and to feel better once more, than I normally did.
We spent two weeks on the Lizard in a very lovely self- catering holiday house, which was perfect- warm, clean, comfortable, peaceful and spacious, just right if you did not feel like going out every day, but choosing a restful day with a book or TV film. On days out we even managed to bump into Jenny Pascoe in St. Just and Candy`s husband John, at the car boot sale at Rosesudgeon! It was a restful and peaceful time. We have learnt to grab every chance possible of a change of scenery, a day out, or a holiday if possible, and it doesn`t need to be in a far flung distant exotic land, with all the mine fields of travel insurance such as it is! Cornwall in the sunshine is heaven on earth to us! Well even on rainy and not so good days too! The beautiful untamed moors around Zennor and the tiny, perfectly formed cove at Cadgwith or the stunning curve of bay that is Coverack are all entrancing. We had a near miss with Ross Poldark. Apparently he was filming at Bottallack three days after we left for home! Damn!
I still suffer from tiredness and fatigue at times and find that I have to listen to my body. I have found that the best way to deal with cancer is to try to beat it at its own game. First of all treat cancer with the greatest of respect, and then challenge it by allowing the body to rest and recover after strenuous physical, mental and emotional periods. Many of us cannot go through life as before. The lucky ones who have early diagnosis, do the best. Some run marathons, abseil down cliffs, cycle the length of the United Kingdom, parachute out of planes or walk the trails of romantic, historic ancestors. To most of surviving cancer patients, these activities are merely a dream. I sometimes feel guilty that I can`t summon up enough strength and energy to do a bit of light dusting or push the hoover around!
I also think that the general public out there, with little or no experience of cancer in themselves or others, believe that as long as you are treated for cancer and survive, then life is your oyster once more and you can, as it were, get back on your bike and pedal away as before. But in my experience we are not the same people anymore and do not share the same views on life. I sometimes think doctors have this vision also! I have found personally that there is little support from general practice, especially after treatment via the hospital. Indeed they are so busy it seems, with day to day illness, that in a way I can understand why cancer survivors often feel cast adrift. Who do we turn to but people like ourselves? Even so, what can GPS offer? Sympathy, experience in cancer survival, medications? I don`t believe that they have the time nor the necessary implements. I have been in hospitals, surgeries and even chemotherapy units where having frank and transparent conversations about the disease is so avoided by professionals. I experienced this very problem in hospital at the time the cancer had returned, just over a year ago. I was diagnosed in the sparsest and most inhibited language possible by the professionals who were diagnosing and treating me. It seemed as though each one was hoping that the one before or the one after, would tell me the bottom line, when in fact no one had and no one did. It was left to my trusty and pragmatic oncologist to do that, several weeks later. Many people whom we know, find socialising with cancer survivors and patients, sometimes uncomfortable and challenging. They are not sure what to say or not, whether patients, formerly their friends, will want to discuss their illness, treatment or recovery and suchlike or whether they really want to know. Some friends avoid the talk. We have found those friends who stay the course and those who become distant.
Cancer is also best challenged with the best food you can choose to eat. When you eat well you will feel better and your body will be the best it can be in the circumstances. There is a lot I can`t eat at all anymore and some things which I can eat in small amounts, and that is when I do not expect to go out away from the comfort and privacy of my own home. Whole natural foods such as fresh nuts, some vegetables and fruit for instance, have to be thought about before consumption! These foods normally cause numerous trips to the loo or wind which is difficult to tame – embarrassing and awkward for some, laughable and inconsequential to others. We are all different.
Back to the story – As the six week break progressed I began to experience quite severe pains in the back, abdomen and liver. My newly regenerated liver is a strange protruding shape to what it was, due to three surgical procedures. It often feels slightly pressured. These new different pains were quite intense and I also began to find eating food a challenge. I began suffering fullness and indigestion at times. This has given me great concern over the past few weeks. The mind can take riotous trips, on becoming a cancer patient, however hard you may try to keep calm, stay in control of your sensibilities. What, I thought, if the cancer had raced back due to the cessation of the chemotherapy?
My six weeks was up yesterday, and I was feeling both relief and anxiety at seeing the oncologist again. I had listed all the symptoms and anything else which I wished to ask, as I always do. By the time I was called to see the oncologist I was fairly worn out, mentally and emotionally. Then came something which I hadn`t expected. The other oncologist, the one with the handsome dark good looks called my name. Where was my down to earth, steady, pragmatic and the only one with seven years of sharing all the ups and downs of my roller coaster life, today. He has been called to the ward. Oh! But will Dr. Enormously Kind and Attractive oncologist be open to the type of inquisition which Dr. Honest and Dogmatic, is used to at our consultations?
I go through the list of symptoms, I give him the sheet. He says “But your blood tests today are wonderfully encouraging. Everything is revealed at excellent working level. Look, your kidneys, platelets, liver, all is sound. Your scan six weeks ago shows that the cancer is being controlled well by the chemotherapy. I would say that you can have a six month break from chemotherapy from these results.
I gulped. I was not convinced. Why have I got these pains then? I had wracked my brains trying to convince myself, as you do, that it might be something simple, less worrying. I take two medications - one to prevent osteoporosis and one for persistent sciatica, a troublesome condition stemming from a broken and repaired hip replacement of two and a half years ago. I had studied the list of possible side effects on the information slips involved. The medication Gabapentin which has been very effective in controlling the sciatica may be the cause perhaps. I related all this to the oncologist who agreed that this might be so. We agreed that it would be wise to ask my GP to change the medication to a different one.
I was not convinced that the idea of six months off chemotherapy would be a good thing. I said that my usual oncologist stated that only short breaks from Avastin could be taken, as the Cancer Drugs Fund had taken Avastin off the its drugs list as of March 2016, when it had been deemed too expensive to continue its treatment for patients with advanced bowel cancer as I am. The proviso was that if a patient was currently medicated with Avastin, prior to that date, then that patient could continue with that treatment. Did this oncologist understand the implications of this for me? At that point he said he would speak to my usual oncologist. He went off. The two of them returned together. I repeated my concerns. I said that I would feel more confident in all ways, to be able to continue with the chemotherapy for another period. The returning oncologist said that I looked well but my hands were not healed yet, but immediately agreed for me to have more chemo and so I began a new course of chemo yesterday. Now I have just got to sort these new pains out with my GP.
A wonderful moment of relief flooded over me. The scales had risen to positive once more. Perhaps the future is safe for longer than I had begun to believe. Time to do more and achieve more, time to experience the joy of being alive, more time to promote kindness support and love.