Chemo Diary #6 31Jan16

After the last treatment of chemotherapy, on the 12 January, I was feeling quite low with tiredness, lethargy and diarrhoea, all side effects which some patients may experience in chemotherapy.


As well as that aspect, I am now nearing the time when I discover how well the chemo has worked and pondering what the near future might bring.


However, last weekend Phil and I attended an annual “late” Christmas dinner with the spiritual healing group of which Phil is a member, and from whom I have received healing, in some of the difficult times gone by, especially when I was diagnosed with Stage 4 terminal colorectal cancer in July 2009, when seemingly to me, immediately, I was bombarded with pessimistic prognosis and shaking heads, as I underwent firstly chemotherapy, which the oncologist had described as “a long shot” with direct reference to my particular situation, followed by a rectal operation to remove the primary tumour, a few weeks following surprisingly successful chemotherapy.


 My new GP continually emphasized the benefits of meeting with a specialist cancer nurse from the North Devon Hospice, one who would be similar in status as a Macmillan nurse.  She could really help and support me, the GP extolled. I eventually agreed, with much reservation, really more to please the GP than for any other reason; but perhaps though, I was being over sensitive or too independent, but never in denial I must say, as I have always been fully aware of the direness of my health situation, and there seems to be an awful lot against you when you have recently received a terminal cancer diagnosis.


 I saw the nurse, she came to my home. I was undergoing my very first treatment of chemotherapy, of which I had absolutely no experience or knowledge of, apart from a talk with a chemotherapy nurse, in which I was handed a details list of possible side effects, as a lot of patients in the same position are, at this stage. 


The specialist cancer nurse stayed for over an hour, discussing my family and background, she made little comment on my current situation, in which I was trying with all my mental and physical strength and might, to beat this vicious disease. Emotional and physical difficulties are in ever present attendance throughout a lot of cancer patients everyday lives. No words of encouragement were spoken to keep up the fight. There was no reference to my agreed, ongoing treatment plan whatsoever, of chemotherapy. The possibility of a rectal operation was not touched on.


At that time, at about five or six weeks since the cancer diagnosis, I had gone through quite a lot of the usual emotions such as shock, disbelief, fear and anger, but I had already, in a way, come to terms with the “challenge” that stood before me and was, in my mind, already determined and primed for the fight of my life. (I bluntly told the oncologist that I was too young to die, that I didn`t want to die now and I would try anything to try to get through this.)
In this meeting with the nurse, I was able to speak well and fluently, without tears or emotions clouding over the present issues.  I was completely composed. As the nurse went to leave, and moved towards the front door, she queried almost as an afterthought, “Where would you like to die, at home or in the hospice?” It was almost as if I was being asked, “Have you decided where you`re going on holiday? I know this comment might sound a bit harsh, but that`s exactly how it appeared to me. Perhaps she believed that my unemotional and self-controlled manner at our meeting, was a sign, that I possessed total and stoical acceptance of my ”imminent” death. She was totally out of touch with my emotional and mental state.
The wind went out of my sails and I mumbled that I hadn`t thought about that at present, which was the complete truth. I could hardly get the words out. I could not believe that it was necessary, at that point, after an initial meeting, that a specialist nurse would consider it vital to discuss the whereabouts of my demise, when I had just, in my eyes, begun the battle in earnest, after absorbing the damning terminal prognosis. Phil, who was present through all this, said afterwards too, that he was astonished too, that this was spoken and necessary at this particular moment in time. I never saw the specialist nurse again, and never accepted the offer of “days out” at the Hospice.


Obviously some cancer patients find great comfort in the services and care of the Hospice and it`s dedicated care and purpose. I was not ready for that yet, I had this fight on my hands which required a great spirit, great positivity and purpose. I was not ready to organise my own funeral, as important as the NHS and other bodies may believe it to be. Patients, I feel, in this position, when newly diagnosed, those with plenty of “fight” in them, wish to take back some control of their lives, and not be ushered along in the pathways of “Giving up” or “Giving in,” before every medical avenue has been tested and tried. I felt that I was just starting out, which in time proved to be what unfolded.  

  
Back to the present - The Late Christmas Dinner at the farmhouse B&B, at St Genny`s.
This year the group of us, healers and friends, twenty one of us, were seated around one large table and were treated to a choice of roast turkey, roast beef, duck, salmon or a vegetarian dish. Then a range of home- made desserts, black cherry trifle, apricot and almond frangipane, fruit-pavlova, cheesecake, and sticky toffee pudding. 


This farmhouse near St Genny`s, offers B&B and group dinner parties.


The group is made up of trained spiritual healers and they all possess the most marvellous empathy, kindness and humour, I have ever met in one organisation. I first found this group by accident, when they had an open day in parkland at Bude, where they offered healing, in a large tent, erected especially for the day.


 From the summer of 2010, I received healing from different members of this group, on a regular basis. This group helped me get through some of the toughest times, when I was completely uninitiated in the ways of cancer, its effects, treatments and the possibilities. You could say that I was reaching for any kind of help and support, however believable it might be. We met and made many kind and stalwart friends during those times, people who weren`t afraid of illness, who were non-judgemental, non- critical of  people`s depression or any simple notion which affected any person asking for help and support in difficult times, either physical or mental……….


The Christmas dinner went extremely well and we had an uproarious time, with members of the party reminiscing about all kinds of topics, mainly events of our youth and “online dating” for the older generation, who may be lonely through widowhood or divorce. Apparently it was highly recommended by a couple in our party, who had met online originally, and after an assignation, meeting at the recycling bins at a car park in a small Cornish town, went on for a meal that lead to love and marriage!  Then another gave us some lively musical renditions on the piano in the same dining room, to great applause and appreciation. 
Back to the present……


I underwent a CT scan on Tuesday, last week and I have an appointment with the oncologist on Friday 5 January, to discuss the results of the scan and the medical options for me now.
In August last year, when the cancer had returned after a three year gap, I was advised that the cancer is now inoperable because of the position it is in, within the liver, being wrapped around an essential tube called the bile duct. The major part of my liver is new or regenerated following three liver resections, or operations. The latest occurrence is in part of the original or “old” part of the liver.


I have fitness and tenacity on my side, but will I have an alternative way forward offered to me? The oncologist said in our chats about this conundrum, “Well never say never, when it comes to operating”, but I feel it will be another miracle, if surgery can be considered again. He told me some time ago that I am his most successful case, for a patient who arrived for a consultation with Stage 4 colorectal cancer. I`d like to keep that place for as long as I can.
So this week I have been quietly pondering the future as many of cancer patients have to, at times in their treatment and wondering what next I will face.

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