One year post-cisplatin

Been just over a year since I kicked the cisplatin habit. Can honestly say that not one part of me got on with it in any way - but it can sure kick some serious cancer butt. 

Towards the back end of last year I was able to be objective about things - all I can say now is let that WMD do it's thing. There are no guarentees - and as it never signed the Geneva Convention be prepared for some collateral damage - however it is well understood and no reaction you have to it will be a surprise to the Doctors ...

Seriously though, I have just had my one year post treatment appointment at Papworth. Appointments now less regular (ok 3 months to 4 months but who cares ?!), and now only one scan a year. I've always got there early, never complained (daft thing to say really as they are truly life savers), and both get on well with and have absolute confidence in my Oncologist and his team. I have no idea of my prognosis - but my thymoma is still dormant so life is good. Every month further solidifies my position on that probability distribution of life expectancy - and that is ok by me.

A few thoughts on recovery and long term impact of chemo:

• It takes the same amount of time that you were on chemo. to even contemplate normality. You will know when you are better.
• When you go back to work, only handle a couple of days and if you comute (especially to London) travel outside the rush hour. The escalators on the Tube are a killer
• Take at least two months on reduced time
• You will feel bitter - looking around an office and thinking "why me" is completely normal. Just remember what you have been through - there is no one else you can see who has anything like the strength you have
• You will be shattered - perhaps more than when you were on chemo.
• Think very hard before you go back full time. I have been working full time since the beginning of February and have only just about got myself to a physical level that thymoma allows me to be at.
• Chemo can mess up your immune and digestive systems.  I am actually less prone to infections than I have ever been (that is more because thymoma had weakened me over time pre-treatment) - however when one gets through it does hit me hard. Re digestion, it's more a case of think before you eat - don't hold back but you will be more prone to minor "upsets".

I have got though all of this by being very "matter of fact" - and I apologise for how I may be coming across - but that is just me. From the moment I was first "drained"  after my thymoma went well and truly critical (well you have to lose something first to make room for the treatment ...) I have tried to understand exactly what had / would happen to me from an engineering perspective. Sounds perverse, and yes I have been to some very dark places in between, however technically understanding the interactions between the tumor, chemo and the rest of me has (for me) been a comfort. 

There is no cure, and I know that sooner or later my condition will require a further "seeing to" with an ever less effective toolkit. But, again, I know I am in good hands.

And I guess that comes to my real regret in life. Since I first logged on to this site end of last year I have been appalled at the variable (could use stronger words here ...) level of service the NHS delivers to different people. There is no excuse -  as there are some outstanding models around for the rest of the NHS to follow at very little expense. My own experience is with Papworth and Addenbrookes - and to me they have been outstanding. I could not even attempt to express my gratitude to them.

I am more than happy to help anyone in any way - and can easily drop back into "objective mode" re what to expect, how to cope (Del Monte now do pineapple flavoured ice lollies - they can certainly drill through that metallic taste!), etc.

All the best to all

Richard.