Thursday, 25 April 2013

Update.

I went to see Dr D this afternoon. I didn't do the stairs to his office, that is my Everest at the moment and I have put the challenge on hold.
Siobhan and I went into his office, as usual he greeted us with a smile and knew I had been in hospital. I explained that I had a very bad chest infection which he knew had been festering for months. It got to the point where it had to be seen too and with me having aspirating as well, it was even more important to get it sorted out.
When I aspirate, the fluid goes on my lung and not down my gullet as it should. this is a lot to do with the TOF, Tracheo-oesophageal fistula. I have a tube connecting my wind pipe and foodpipe.

Air bubbles at the site of the hole cause fluid to spill over into my windpipe, as it is all so close together, it is difficult to breathe when this happens. It has to be the most frightening thing ever, not breathing, I hate it. I fight it as I take deep breaths to keep some oxygen going in and to keep my SATs up as I know this is important. That is foremost in my mind when I have an attack.

This happened last week and I was admitted to hospital. I am sure I need a dilatation, this means I need my oesophagus widened as it has narrowed due to the TOF. I get a lot of reflux with it as well. It is all so complicated.
I told Dr D I had been in touch with Dr TOF who recommended a barium swallow and an endoscopy, to which he replied I should get a CT scan done first so we can get more of an idea what is going on. The clips Dr TOF put on have gone, fallen off. The TOF hole looks smaller, I do have something happening inside as I click when I breathe, this is clearer at night when I lay down, It is so loud that I can record it to play it back. I think it is a blockage or could be something overlapping the hole that is being sucked towards it when I breathe in and away when I breathe out.
Why oh why does it all have to be so difficult, why can't anything be straight forward?
So, I will wait now until next week when I have another appointment with Dr D to discuss our plan of action.
We have Dr Dp, Dr TOF and Dr D all ready to liaise with each other which is great. I want my lungs working properly again, this has been the closest I have got to feeling like this is the end.

apologies, I am going to rant.......

I have felt so upset about it, especially losing my chemo buddy and watching as her dear children try and make some sense of losing their mum while they carry out all the arrangements, It has hit home a lot. I miss my friend so much, I would have chatted to her about how I felt and I know I would have got some good feed back from her. How selfish am I to want her here for me, I want her here for her children, they are heart broken, left to pick up where she left off. They are strong like her, I know they will get through it, I wish I could do more but I am such a helpless case at the moment, I have to rely so much on my baby girl, she doesn't complain, she gives me the odd telling off if she thinks I am not thinking straight. I am so glad to have her but it should be me taking care of her. She made soup today and my evening meal.
Is it not enough that we have all this to deal with and then a bit more thrown into the pot for good measure?

Why is it always the same people who get life's problems. Not just cancer but dear Mavis and Ray dealing with his heart attack, Tess, like me, finds something to go wrong with most of her treatments. Isn't it enough just having mesothelioma, an incurable cancer, a pain in the ass, a bastard of an illness. I don't get it. I am not saying I want someone else to have something, I am saying leave us the F*@k alone. Let us live what we have of our lives and let us be happy. All i can say is that cancer makes you a stronger person, it brings out the fighter, the warrior, the hero. Samantha left a comment about Kathy, my wonderful friend, describing her dressed as Bodicea, Yes, I can see it too, a lady who held her head high until the very end, who cancer never did take, her spirit was too strong for it. I hope I can be half as brave as Kathy when the time comes, I am hoping it isn't now, I am not ready. I don't think I will ever be ready.

Rant over...... Back to the fight. I have decided to mark my 7th anniversary of meeting Theo with a tattoo, I want a dragonfly and to have it even more special, I want Siobhan to design it. I asked her how she felt about me getting a tattoo and she was alright with it. I will be very proud to wear it and to make it even more special, my lovely friend, Denise who passed away a few months ago, has 2 daughter's, Lou and Kelly. Lou has a tattoo parlour in Weymouth, What better way to get it done but the warrior way. I will be so proud to get it done by a warrior and to have it created by one. Perfect, this will be happening in October, another Milestone, a long way off yet but I hope I get there.

My breathing is not too bad at the moment, I can't walk very far, I find sitting forward much easier on the lungs than laying on my back. Lying back seems to create a lot more weight, I struggle more. I had to sit up while all the scan stuff was being done. It is mainly like it if i have been exerting myself, a short walk will do it.
So I wait, again, to find out the next step.

Congratulations to Tess who had a great result with her scan. 25% shrinkage with her tumour, such wonderful news after such a heart breaking few days, I am so pleased for Tess as she has had a tough time of it recently, well done girl, I am so proud of you.
Well done also to Steve W who seems to be doing well. All the CT scans will be starting again soon and I really hope they are all good ones, also ian who is seeing his dr today, i hope its good news, come on Mesothelioma, do the right thing and give us good news.


                            Dedicated to all those fighting cancer and those who have heart ache.



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