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Cartography of Cancer

It has taken a while to think about this, how to say what needs to be said.

In the manner of current NHS guidelines for clear and open communication to patients my parents have been receiving copies of all letters sent from specialists back to my Dad’s GP.

Right upper zone mass-stage T2b, N2, M0 if NSCLC
COPD

Very informative.

Scared what any of that might mean my Mum asked if I could ‘translate’ it back into something approaching English for her before she told my Dad about the letter. (I know, I know, it’s his cancer not hers but that doesn’t stop her trying to take control of everything).

I did what most people would do nowadays – I Googled it. I thought I was getting quite good at working out TNM classifications, the calm and clinical discussions of the latitude and longitude of illness. I could even show her the figures for 5 year suvival rates. They were not good but at least it gave hopes that he would be able to see another football season through.

PET scan results came through next. They showed the folly of trying to play the odds game. The lung tumour may have been stage 2 (still operable) but his spleen showed up hot. At stage 4 they have said there is no point in trying to take the lung, my Dad wouldn’t survive the operation.

Three to six months they said. Three to fekking six months for a man who, even a month ago, didn’t know – or didn’t say – he was ill.

He had his first session of chemotherapy on Monday, his second will be tomorrow.

This isn’t a cure, this is just an attempt to slow things down. I’m not certain how much can be done. Now that he is in the care of the real specialists at The Christie they are being kind to him but they are being honest. The jargon has stopped and they are speaking to him in English.

He is too weak for the more aggressive forms of chemo. He will have three sessions and on the fourth week they will take a view on whether or not there has been any response to the treatment. If there has been no benefit then they will not put him through any more medical poisoning and all that will be left will be palliative care.

If he responds to the treatment, and the side effects are bearable, then they will continue for up to eight more weeks. At best, if all goes well, they think they might be able to buy him another three to six months.

As a family we are coping in different ways, none of them seem to be particularly good but I guess that that is quite normal. My parents have been here before. Specifically they have even been at The Christie before as my sister died of cancer in the mid sixties. This time around they have been sent away with leaflets packed full of advice and phone numbers and how to get support for all aspects of the illness and the grief that is to come.

I think that first time round they got nothing and have struggled with the effects of the grief ever since. In the sixties it may have all been stiff upper lip and keep calm and carry on left over from the war. That was the environment I was born into and I’ve never really been comfortable with emotions. The stats and the charts and the TNM I can get my head around. The thought of my Dad just not being there and, more importantly, the thought that he may suffer in the process, is something that I have no answer to.

My job has always been to fix things. I can’t fix this.

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On not appreciating what I had

A few years ago now I started to feel ill and began the merry-go-round of doctors, tests and – needless to say – problems at work as I went through phases of just never seeming to wake up.

Symptoms: fatigue, thirst, nausea, pain in joints, sweats, burning skin, itching, loss of concentration, insomnia, increased irritability. Did I say fatigue? Oh and forgetting words at work! It was so frustrating. If I could get to the end of a sentence I couldn’t remember the …. did I say fatigue?

And what seemed to bring all this on? I had hit forty and joined a gym. I had bought a pair of trainers that corrected the pronation in my ankles and could run for the first time like ever without pain. At the point of going to the doctors I had been at the gym 3 times a week and was running at least twice a week. Not doing anything mad, I’d just gradually built up over time in an attempt to correct the damage of years of neglect. The week before I had a bit of a collapse when my legs just didn’t seem to want to work any more I remember that I had never felt so good and everything seemed to be going well – I was happy at home, work was good and I’d gone from being over a size 16 to being an easy size 12.

Test start and questions are asked, given my age and the fact that I had lost about 2 stones in weight (total weight loss ended up at 3 stones) diabetes was an early contender. But no, I’m not diabetic … just glucose intolerant. Two months of tablets for this mystery intolerance and I’m back at the doctors feeling no better just to be told that “oh no, glucose intolerance has no symptoms, that was just what we found.”

Nearly 2 years in all to get a diagnosis of M.E. (Chronic Fatigue Syndrome, or whatever is the current fashionable description). Nothing really very scientific, they just tested for everything else and when it was proved not to be Cushings, or Addisons, or a pituitary tumour, or anything else that might have been treatable we ended up with M.E. as the last man standing. The only thing was not seriously suggested was anaemia and I had begun to think that could have been highly likely with the amount of blood that I lost in the process. It was a good thing that I have always been vaguely interested in medicine and have absolutely no shame about collapsed veins and bruises on my arms.

Maybe I have been one of the lucky ones, there was a neurologist in the area who ran and M.E. clinic so I got onto a management program and have also found a sympathetic ear at occupational health. I know I could be much, much worse off.

I still work. I have had to reduce my hours but I do still have my job. The people I work with are quite understanding, they are used to seeing the zombie in the corner and know that some days she just can’t make it in. The people I work for say very little. What can they say? Though I never wanted to have the words said it seems that I am now protected by the disability discrimination act (that sounds so wrong and potentially unfair to those with more ‘real’ disabilities).

I am now low sugar, low fat (high cholesterol was the news flash last week), low/no caffeine, and low dairy (oh, but increase the cheese because of risk of osteoporosis – can you see a problem with that?). I’m still on the tablets for glucose intolerance. When asked what the point was of taking them I was told that it was to avoid diabetes in the future and that I couldn’t come off them unless I lost a lot more weight (“Hang on”, thought I, “you said the weight loss was part of the problem …”).

I am also now quite low on fun.

None of my symptoms have actually gone away, they just come and go mostly according to stress/excitement. Going for a night out and having a laugh can cripple me the day after. Bad news can set me off. Making the effort for social interaction definitely takes it out of me. Strangely enough the gym has been one thing that has kept me going, I have just had to learn the exercises that cause me problems and work around them. I can manage a massive 6 – count ’em – 6 lunges in total and can now skip for 1 minute before knowing I will collapse later in the day. I no longer attempt to run any distance. In contrast I seem to be able to do sit-ups, push-ups, some planking and punch like anything with no apparent ill effect.

I’m not certain but I might be one of the few M.E. suffers who kept their gym membership and users time off work to see a personal trainer. Odd though it might seem this is the only time I get encouragement to try and see what I am still able to do. I may no longer be losing weight (how all this started in the first place) but my body fat has gone from 29% to around 22% so for a forty something woman with a sedentary job that’s not too bad.

Wikipedia have a cracking article at http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome It scared the daylights out of me when I first read it, now it’s like an old friend.