Retrospective

Someone told me the other day that I had had a terrible time of it with horrible things happening to me. I suppose that is true. It is less than ten months since it all started. If you'd have told me a year ago I would have gone through this much I would have doubted your sanity.

Just listing the procedures is enough. The first signs and the weeks of terror at the abnormality and knowing "surely" that it was fatal! That truly awful local anaesthetic scope, the shock of the diagnosis even though I thought it was that all along, the operation and recovery period first time, weak as a kitten, still frightened, and then (Oh my God) that awful IVU X-Ray thingy when I truly wasn't ready for it. The next follow up operation and its unexpected outcome, recovering from that. The relief of the results but the subsequent realisation that whilst it looked better - things were more dangerous. The 6 weeks of Immunotherapy before Christmas. Getting better and fitter and getting ready for a New Year and then to be made redundant. The disappointment of the operation being set back and all the blood pressure problems and then the last operation. Putting it that way - how can I not say that I agree with them.

I ought to add here that on top of this you can add the stress, panic, strain, terror and pain. Then stretching your relationships with family and friends to breaking point, losing your get up and go (mine got up and went) and not really wanting to do anything or commit to anything either.

Let's add to that the problem of finding a new job that is going to be flexible enough to accommodate the next course of treatment. Let's face it, an interview now would mean that I may not really be able to put a full week in for 2 or more months.

I can add to this that there are other pressures that aren't immediately apparent. How about trying to plan a holiday - no one got a real holiday last year. The ability to commit to dates, other than weekends in case treatment clashes or overruns. Whether or not your insurance actually covers and whether the Consultant and GP will get the right forms back. I mean it has only been 6 months they have been trying to sort this out. Who knows whether the damn thing will ever pay out. If things had have been worse then you can imagine that the family wouldn't have got anything which sort of defeats the object of taking it out in the first place.

Loss of concentration, lack of any ability to plan, loss of enthusiasm for anything really, stuff screwing up your thoughts and a brain that just wont do what I tell it too (perhaps my brain has turned female??). Not getting much sleep and processing lots of options and what if scenarios - you know what if this happens, how will I do this, If I cant find a job how long can we last, will I be around for my Kids graduation / weddings and all that sort of guilt stuff. Oh yes and if only I hadn't have done so and so in 1970 something.

I am sure I could add to this list a couple more pages of negatives.

What about the positives?

Better life style than ever
Heightened sense of the ridiculous
The experience (I doubt I am a better person - just changed)
Major changes coming
Fitter

I can't think of many others at the moment. I am amazed at the recuperative powers of the human body. I saw people smashed up worse than I was and they recovered as did I. I really felt beaten up the first two times and either I'm getting used to it or resilient or I'm just plain too stupid to feel knocked out! I am amazed how you can deal with a situation in many different ways and the processes you have to go through to achieve your goals. The demons you have to slay for yourself and the way you do that. I'm more surprised that I have the ability to be patient with people who are utterly stupid or just plain bloody ignorant. Whilst I like to show a hostile and belligerent attitude - I do try and be measured even when people are being downright stupid.

Of course I'd never ever wanted to be in the position, but I am. What can I observe looking back? Not a lot, I did some important things to aid my recovery and stuck to them. I took it upon myself to find out all I could - disturbing as that was. I know what the options are and I have the ability to discuss those with my consultant and her team. I trust my team and I do everything that I can to support what they are doing. I may not like what is happening to me but I will not stand in their way, I may whinge about it but I do get on and have the treatment.

I took it on myself to change the way I lived so that it would support the work that was being done. Being fit enough to be treated and fit enough to recover are MY side of the deal.

Writing it down is beneficial for me and (I am told) for others. Sometimes I don't like reading things that I wrote but I will leave the comments there for people to see.

I am so glad I didn't get anything more serious, more invasive or more deadly.

I still haven't realised how close I came or still could come with this. A few layers of cells - that is all, a few layers of cells.

We won't do was it luck or something else tonight - or as it is in the early hours of the morning. I'm afraid that hasn't stopped happening. I have the worst sleep patterns these days.