Sunday, 29 September 2013

No Longer in Control

I guess over the last 6 years I have to some extent being in control of my life, my illness and how I have dealt with it.  From pain management to finding treatment has started and finished at my own door and if I got it wrong then it was my fault.

Now I have a drain insitu I am not in control anymore.  I have to start having a routine that remains the same.  No longer can I just get up, read the blogs, reply to emails, check on face book then have a shower and either go to the office or work from home, but all at my own pace, some days fast and early, some days slow.  I need to become regulated, sounds like health and safety in a factory floor!
I will have to be seen weekly by the district nurse once I start controlling my own drainage.  I will need to start having a new morning routine, a one that works to a time.  Draining will need to be done about the same time each morning.  I will probably shower first, to help dampen the dressing so I can peel if off, then drain.  Pointless doing it a different way as if I shower after draining then the patch will be damp on my clothes.  If I do it every morning the fluid doesn't then absorb all my nutrients everyday.  I am hoping to gain some muscle back around my shoulders and chest but time can only say whether this will happen or not.
My wound is extremely sore, the stitches are tight and of course it doesn't look nice around the pipe that comes out.  Reminds me of that large tube when I was discharged back in 2009.  The pain is still in my side and towards my back, probably my liver settling back down after being forced from its normal living area. 
Yesterday I took an additional 100mg of morphine, 2 lots of 50 to get me through the day, I also took another muscle relaxant last night to ensure I got some sleep.  I soaked the bed again last night with sweat but didn't notice it as badly because I slept deeply.  Movement is still causing a lot of pain, either in the shoulder or the side and climbing the stairs is murder.
I know in comparison to operations I have undergone this is nothing but pain is pain and mars our life something cruel.  I will have several district nurses, depending on rota, Linda who came yesterday and this morning knows me from the big operation.  I told her I was hoping to go in the office tomorrow, she paled and told me I can't.  To be honest I think I would be stupid too, sitting at the desk is ok but having to move is something else.

I could feel the fluid building up and when I got up this morning a large volume had already gathered on my left side.  I couldn't wait for Linda to arrive, clock watching until the time she thought she would be here.
I was going to give it a go myself but the pain of trying to remove the dressing was bad enough, any tugging made the pipe unbearable.  The minute we tapped the fluid poured, I doubt it even needed a vacuum on it, the first litre was out in less than 4 minutes.  We changed bottles and did another one.  The flow didn't falter.  There is still a lot more to come but in the community we are only allowed to take 2 litres at a time.  Seems strange when having a procedure done we can drain much more off without a problem.  As the fluid was draining I could feel my stomach shrink, its amazing to see, I guess in reverse of a camel filling up its humps with water!

My two full bottles
I am the most oddest shape sideways, I wonder whether this will change or I will remain like this.  I know a few ladies who have gone through breast cancer and the mental anguish they have suffered because they don't feel like a woman any more or attractive to their spouses.  I have always tried to have empathy and I know this isn't the same, this is my stomach for heavens sake.  But I have scars that can be off putting and now I have a pipe sticking out of me and am the strangest shape of any human being.  I know that beauty is skin deep and that love doesn't see the scars or the shapes but in our minds we start getting a hang up about it.  I went through this, quietly, after I realised how ugly my body was after the operation, would Gary still want to hold me.  His hand feeling the crevices in my skin, the tightness over the shoulder blade and down the ribs, the strange lump that is in my left breast, now he won't dare hug me tight in case he feels the pipe pressing into his own flesh.  At least before he could always hug my right side, now he can't hug either.  We go to sleep with my lying on my left side and him cuddled up behind me with his arm resting over my waist, now he can't do that, my new appendage will be in the way, plus I doubt I could take any pressure on that area.  We can never fall asleep properly unless we snuggle up.  Ok I have slept the last couple of nights only because I have taken something, whereas Gary has laid awake for hours keeping watch over me.
I also read this morning one of our friends lost a really good friend suddenly this morning.  We met him a couple of times while on holiday in Dubai, Eugene was the perfect gentleman.  He worked at the Burj's front desk for customer services and what a nice fellow.  So sad that for years he worked in Dubai to support his family back home and then he went back this year to be with them to die suddenly.  How unfair is life sometimes. 
Each day the whole human race is battling through life, some don't realise how good life is and take everything for granted, others suffer terribly - young children born just to starve to death due to ignorance.  Those who are addicted to drugs that make others rich but can't help themselves and end up destroying their bodies.  Then us who have cancer, we appreciate everything but suffer in so many terrible ways.  A young mother wrote today 'Why do those who do wrong never suffer'  her life was damaged by mesothelioma then she discovered she had breast cancer.  I read this and thought the same, I've worked hard, I have never intentionally hurt anyone, tried to look after my body (ok sometimes I may have drank too much) but overall have done nothing wrong.  You will find many with cancer have never done anything wrong yet suffer.  The annoying thing is that drug abusers probably have more money per capita spent on them in the NHS than us with cancer do. 
They will be getting benefits, probably free housing, kids taken care of, frequent visitors of A&E or hospital beds, rehab that costs a fortune and the stuff they use makes some people rich and they don't even pay tax off the sales.  They beg in the streets, some making more than the average wage earner then they just waste it all on getting high.  Not even mentioning those who rob and destroy people's lives but they don't pay nothing back into the country.  Yet terminal cancer is seen as a heavy burden on the state!  Drugs which are needed are denied because they cost too much.  We know that pharmaceutical companies charge a fortune but then they have spent years developing drugs and that costs so I can understand them wanting to make as much money as possible when the drug works - that's a different discussion.  Yet cancer patients, well we've paid our taxes, we've worked and raised families, took responsibility of our lives and when it comes to us needing help we are seen as a burden.  The Government are wanting to override NICE to ensure terminal patients, indeed all patients with rare (I know ours isn't rare but it is still classed as rare) cancer can have drugs that aren't on the standard list.  What is wrong with NICE?  They don't say we will stop treating drug users do they?

I guess that's me done for the day.  Time to let the additional morphine work and give me some relief from my pains.  To those suffering in treatment I feel for you and for those in remission don't do what I did, live don't put your life on the back burner believing you have another day, do it now.

1 comment:

Rossana said...

My very dear friend, i read your blog with tears. You have been through so much lately. I pray for your pain to go away and there will be treatments to help.
All my prayers and positive thoughts are on their way across the ocean to you. You are in my thoughts all the time. My dear friend.xxxxx