Kontext

Jag hittar inga svenska bloggare med blåscancer. Men nu har jag suttit en stund och rotat på nätet och hittat http://my-bladder-cancer-journey.blogspot.com Det är en engelsman med fru och barn och föräldrar i livet. Han är bra precis ett år före mig och beskriver den resa som jag är i nu. Han bloggar om sådant som jag så väl känner igen hos mig själv. Förutom själva BCG-behandlingen, som i mångt och mycket liknar min egen behandling, skriver han om tröttheten vid jul.

Med kärt besök av dotter med pojkvän hos mig nu i helgen har jag börjat inse att min trötthet kommer att vara en medspelare i jul. Eftersom jag ser helt frisk ut och rör mig som vanligt, så är det svårt för andra att veta att jag nästan svimmar av trötthet och att det faktiskt trycker över bröstet.

Här några av hans andra teman som berör mig. Jag har saxat lite ur hans texter skrivna i november och december 2006.

Den jobbiga frågan Hur är det - egentligen? "... It is difficult to describe to someone exactly how you feel.

How am I? I'm fine thank you. Well actually I'm not fine; neither am I well; feeling great; top of the world or any such thing but my automatic response would be to say I'm fine.

I find myself stuttering through that answer now with "I'm fine er, well, um, maybe, well no I'm not really" and off we go. ..."

Statistik "... Statistics represent a range of possibilities experienced by a particular group of patients (as Stephen Jay Gould so well explains in The Median Isn't the Message). Statistics cannot represent all possibilities that all patients will experience forever no matter what they do. They are not fate written in stone.

Understanding a little about the limitations of statistics is also important. In my case, the terrible curve I saw was based on a relatively small sample - I didn't believe there was an absolute limit of four and a half years even with "standard" treatment, but instead I knew that there might be a very small number of people who would survive beyond the experience of this small sample. Small samples do not adequately represent the entire range of possibility. I knew that. I thought I had a chance even if it was a very small one. Statistics outline probabilities - they cannot limit possibilities. ..."

Att leva med osäkerhet "... That is the one thing that is taking up my grey cells these days. Uncertainty about whether or not the Insurance will pay out - my rep seems to be very nervous about it, perhaps it is me picking up the wrong vibes?

The uncertainty of the effectiveness of the treatment. In 4 weeks time I'll have finished the treatment and I'll have to wait 12 weeks (3 months) for the operation and biopsies, then perhaps 2 or 3 weeks for the pathology tests and then go and see what my future holds. ?

Of course I know what treatments are available and that there are combinations of these but, it is not my choice and the results will drive the next steps.

Then there is the other uncertainty side of things. I have to get back to work in the New Year. It will be particularly strange and there will be a lot to catch up with. I feel these days to be much slower than I was - my brain is not so sharp and it takes longer to do things. Will I be able to pick up long term projects or will I have to manage as if everything will be over by Easter?

I think that Cancer affects you physically (although I only feel ill in the background) and mentally because it makes you think about all the negatives first and the positives second and of course it affects those you love which in its turn affect you as well. Coming to terms with these is, of course, the difficult part of the journey.

You also have to face the facts that not everything will come out the way you want it. That will change your plans and perceptions and make you re-plan and move on.

I haven't come to terms with the fact that this is with me for the rest of my life, albeit that it may be that in 10 years time, all things working out well, I will only have to attend the Hospital once or twice a year! Mind you - do I fancy a Cystoscopy a year in the future? I may have to have one - but again it is too early to deal with that as it hasn't happened yet.

I don't think you can deal with the uncertainty in the way that you can deal with other day to day things you can plan. I reckon that as things progress the day to day existence that it is now will become week to week, month to month and year to year. When it starts to get to the point when I no longer need to blog each day, then the first step will have been taken. When the blog gets to being fortnightly or monthly you and I will know that acceptance has been reached and the new normality would have settled in. ..."

Hans beskrivningar nu ett år senare ger mig perspektiv på min egen resa. Han har just fått positiva besked och han än djupt påverkad. "... I didn't expect to get the reactions I got. After 1 /3/4 hours wait - I got to see my Consultant. Handkerchiefs ready? All clear - or "no abnormalities found" as they say.

NUMB

Thanks to all my friends who turned up, phoned and just turned up for the impromptu celebrations. I was shaking so much when I came out that I could hardly hold my phone. Now I have tears in my eyes writing this.

Again thanks to everyone who just turned up - it meant so much to me. Have to sign off now as I can't see much through the tears of being at home and being cancer free.

I can't tell you more than the fact that I am just shaking even now and getting very emotional about it. I cannot even begin to explain to you the utter relief I am feeling or the joy at having so many people come along and join in my celebration of life. ..."

Äntligen en överlevare. Det tycks mig som att livet aldrig någonsin kommer att bli som tidigare. Livet kommer aldrig någonsin mer att vara en självklarhet. Däremot är det en gåva att vara tacksam över och fälla en och annan tår över.