About JohnK

JohnK

My beloved wife of 24 years, friend, companion and kindred spirit for over 30 years died last Sunday. I knew it was coming but I didn’t expect it to be so quick, so final, and oh so painful. Less than four weeks is what it took in the end; from the time she was told that the latest treatment wasn’t working, and there was nothing more that could be done, to when she slipped into a coma and drifted away. She was so brave, never complaining, caring about how the children would cope until the very end. It is so unfair. God I hate this disease. She did not deserve to die like this. She was such a good person, so caring of others, so generous with her time for those in need, and with no vices that could have contributed to the disease. This is my last blog. I think my heart would burst if I tried to continue now. To those who offered me support, thank you. And to everyone else on the website I wish you well and trust you and your loved ones have a better outcome than I and my wife experienced. I know it is a cliché but allow me a final indulgence. W H Auden, better than any poet I know, captures how I presently feel. (I have changed it substituted She for He). ———————————— Stop all the clocks, cut off the telephone, Prevent the dog from barking with a juicy bone, Silence the pianos and with muffled drum Bring out the coffin, let the mourners come. Let aeroplanes circle moaning overhead Scribbling on the sky the message 'She is Dead'. Put crepe bows round the white necks of the public doves, Let the traffic policemen wear black cotton gloves. She was my North, my South, my East and West, My working week and my Sunday rest, My noon, my midnight, my talk, my song; I thought that love would last forever: I was wrong. The stars are not wanted now; put out every one, Pack up the moon and dismantle the sun, Pour away the ocean and sweep up the wood; For nothing now can ever come to any good.

JohnK

We knew it was coming but it still came as a shock. My wife’s liver cancer is not responding to treatment, the tumors have grown yet again and her oncologist has run out of types of chemotherapy to try. We were told when the secondary cancer in her liver was discovered almost 12 moths ago that the outlook was grim, but as long as treatment continues you still have some hope. Last Monday, my wife asked the question she has never wanted to ask before: how long? Three months was her oncologist’s estimate. Three months! What do you do? My wife is an incredible woman: that afternoon she told our children. She thought it best for them to know now rather than for them to learn it from the palliative care team at the family meeting they want to have with us all next Monday. My daughter sort of knew; my son who has been in denial exploded with tears and anger (he punched a hole in wall!). God it was awful. The medical profession and organizations like the cancer council have done a really good job at convincing us and the wider public that cancer can be cured, that you can survive. It was a great slogan ‘cancer is a word not a sentence’. The trouble is some words can be a sentence. I am now in the process of arranging to take 6 months off work.

JohnK

You raise an interesting question Wombat4: interesting on a religious/philosophical and medical/scientific level. I am not a person of faith (although I sometimes envy those that are) and will therefore leave that aspect to one side. But I do know something about the history of diseases and medicine generally and would like to address that aspect. A cancer cell is a cell in our own body that has mutated and gone rogue. It is not that it is acting unnaturally; it is simply no longer obeying the rules and following the same genetic program for survival that the non-mutated cells follow. That it is part of us is why our own immune system ignores it and the new mutated cells can divide and grow. Of course cell mutation is not always bad. It can sometimes be beneficial for the organism it resides in; it is thought to be responsible for much of our evolutionary development for instance. Some of your respondents have raised the issue of environmental factors (plastic) causing more cancer today than in the past. There are a few points I would like to make about this. First of all life expectancy has risen dramatically in the last century or so. While cancers themselves are not necessarily age related, it is a simple statistical fact that the longer a population lives the more cases of cancer there will be. Secondly, with modern medicine has come an exponential growth in the identification of new diseases. It is not that cancers did not exist in the past they simply had not been identified. Many of the nineteenth and early twentieth-century deaths from ‘lung disease’ and ‘pneumonia’, or ‘liver disease’ and ‘peritonitis’ might well have been diagnosed as deaths from cancer had they taken place today. Finally, it is true that some diseases are products of modernity. But often in not quite the way we think. Take Polio. Poliomyelitis (or infantile paralysis) is a virus transmitted via the fecal-oral route. The incidence of polio increased dramatically in the western developed world in the early 20th century. But the reasons for the epidemic are complex: it turns out it was a product of improvements in modern hygiene. This sound counter-intuitive I know, but when you realise that in very young babies the polio virus produces little more than a high fever, but in older children it attacks the central nervous system, you can see why an early exposure to the polio virus could produced immunity in the population before the days of clean piped water and modern sewerage. Sometimes even cleanliness can be harmful. I guess my point in all of this is we know very little about what causes cancer other than a mutating cell going rogue. In the case of my wife’s cancer she did none of the things that are supposed to increase ones' risk, smoking, drinking, eating fatty foods etc. When I think about it I started this response wanting to disagree with you. I guess I have ended up agreeing. There is no point. Take care of yourself Wombat4 John K

JohnK

After the roller coaster ride of the last couple of weeks this week was supposed to be a bit easier. It is a non-chemo week for my wife and apart from a visit from the community nurse to change the dressing on her PICC—oh and a trip to the podiatrist to checkup how an operation on an ingrowing toe nail had gone—the only thing scheduled was a blood test. My wife was still a bit vague and forgetful at time but generally an easy week. It wasn’t. I took her to have the blood sample taken Wednesday afternoon. By 4.00pm we were having urgent phone calls from her Palliative Care Doctor and the Cancer Clinic she attends for chemo. Sodium and Potassium levels were well outside the norm, very low. I had to rush of to our local pharmacist before they closed and to where a prescription for potassium tablets was to be faxed. On top of everything else there was a sudden decision to order CT scans of my wife’s torso and head. Clearly someone else had started to have the same doubts/concerns as me that cancer was spreading to her brain and this explained her cognitive decline not the painkillers. And if the electrolytes in her blood are falling does it mean declining kidney function? We don’t know the results. We were asked if we would like one of the doctors to review the CT scan and let us know. I said no (as did my wife). We will find out on Monday, when she is due to see her Oncologist and have her last scheduled dose of Chemo. That will be early enough and quite frankly if it is bad news I don’t want another weekend spoiled. Of course I will continue to ‘take it’. But sometimes (like Peter Finch in Network) I just want to open the window and scream.

JohnK

Thanks for sharing with me Dotty (and Wombat4 and Tina as well). It just doesn't stop does it and I have already been warned it will get worse and worse.

JohnK

It was not the first time and it will not be the last I know. This morning walking the dog before I went to work I suddenly found tears running down my checks. I was thinking about my wife and what is happening to her and suddenly I was crying. This is not like me. I don’t cry. I quickly stopped of course and by the time I got back home I was my ‘normal’ self: strong, controlled, calm, in control. But deep down I am not in control; in reality I am simply suppressing everything and bottling up my emotions. I am not sure how much longer I can live this lie. I have to stay strong for my wife and the children but increasingly I do not feel strong. I am bruised, battered and in an almost constant state of mental anguish. This is hard.

JohnK

Thanks Tina. It is good to hear from others who have been through this. What you say is probably true, we hurt those we love the most. I will hold on to that.

JohnK

Thank you for your kind words Wombat4. I could not agree more: there is no heartbreak this cruel, cruel disease will not take us to. One of the great myths is that facing terminal diseases somehow brings people closer together. My experience is that it doesn’t. The tension it causes is too great and subtly drives a wedge between the sufferer and the carer. I have had my wife say some cruel things to me. I know it is her anxieties and pain causing it (and she cannot take it out on the children, or the cat or the dog), but it still hurts. And the truth is at some deep level I resent it. After all I am not to blame and seeing someone I love so deeply occasionally turn on me like this cuts deeply.

JohnK

In my last blog (25/3/12) I was optimistic because my wife’s blood results appeared good. I was wrong, oh so wrong. The cancer is progressing. My wife’s liver has blown up like a balloon, she is in serious pain, and as a result spaced out on painkillers. At the last consultation, her Oncologist talked about stopping the chemo when this current schedule finishes. We have now been put in touch with Palliative Care. My wife is a real fighter—if sheer will power could beat cancer the disease wouldn’t stand a chance—and she bristled at the suggestion that treatment stop. And when the oncologist asked if she wanted to know what her prognosis was my wife said she would prefer not to know, what is the point. She is right—how can knowing help a cancer suffer—but I need to know. I phoned the oncologist later that day. The news was not good. I asked if it was weeks or months. I was told it was a bit of both but the doctor would be astonished if my wife was still alive in 6 months. It was awful to go behind my wife’s back like this but I am going to have to take time off work to care for her and I need to plan. Last week was bad. The hospital arranged for us to be contacted by the Palliative Care Service. When my wife heard they were coming round to the house she was furious, furious with me. Boy did I cop it: I had gone behind her back, no way was she going into a Hospice etc. As it turned out the Palliative care doctor was brilliant. She charmed my wife, calmed her down and even got her to open up about her gravest fears. She is not worried about herself of course, she is most concerned about the children and particularly my son who suffers from depression. We are going to have a family meeting in a few weeks time and talk things through. Hopefully it will relieve my wife’s anxieties. What worries me most at the moment is my wife’s vagueness and confusion. For someone who was/is bright and highly intelligent it is really difficult to see her like this. The doctors assure me it is the painkillers causing it at the moment but I know that when her liver starts the fail it will affect her brain function. It is hard to deal with her in this state of confusion and forgetfulness. She insists on cooking meals and then forgets what she is doing half way through. A leg of lamb was partially ruined on Sunday because she turned off the oven thinking it was the grill! And this evening when I got home from work she asked me to put a crab quiche she had made in the oven. The problem was she had not actually put anything into the pastry shell she had baked. It would be less stressful if I did all the cooking myself but she doesn’t see it that way. And then there is keeping check of the medical appointments and visits by the community nurses etc. She has a book to write things down in but is constantly misplacing the book and then getting anxious about that.

JohnK

Thanks for your kind words and sensible advice. It is just that at the moment I feel worn down by it all. I will get up again at some stage and I know I have to, but gee it is hard.

The End

When treatment stops

Re: What is the point

I am as sad as hell and not sure I can take it any...

Re: Spaced out on painkillers

Tears

Re: Spaced out on painkillers

Re: Spaced out on painkillers

Spaced out on painkillers

Re: The Hardest Thing

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