Tuesday, 23 April 2013

Mixed emotions.

It's a week of mixed emotions this week, Dear Mavis, my lovely friend and warrior sister had some not so good news about her mesothelioma. She has the same as me, meso in the right fissure, this is what is causing the pain inmy shoulder. Hers has slightly advanced. Mavis being Mavis will dust off her feathers, like we all do and fight again but the next few days she will go quiet and contemplate the next battle steps. We are all behind her as always. Love you Mavis, I will help you up when your ready me friend and walk beside you x
The other side is our warriors sister, Heather, who has great news, no cancer seen!!! this is wonderful and gives us all a boost. Well done Heather VSJ so proud of you young lady. We are both survivors from 2006 so I hope we can continue this journey together, building up our years behind us.

Me, I am doing much better than I was, my breathing is getting better. the pain kicked in last night, in my shoulder, well 2 am this morning actually. Dear Siobhan must have seen the blue air coming from my bedroom, yes, I was in top form, f'ing and blinding at the pain. It eventually went after I sat up and waited for it to pass. I told her to go back to bed, I was fine. I am complaining so know I am doing well. I didn't take anymore Oxynorm as I had taken 5 ml 2 hours before.
Sharon from the St Lukes Team rang to see how things were and said I could have taken another 2 ml if I was in pain. I am seeing the team on Monday which is good. Because my breathing is getting better, the pain seems to break through so all positive. I saw mt Dr yesterday as well, I have a course of steroids to continue with which I am pleased with as this has helped a lot. I have been coughing up a load of ectoplasm which, thankfully, hasn't any signs of green in it.

The weekend is going to be fun, My Warrior sisters, Angela and Tracey, from Barrow are arriving in Plymouth on Friday, it will be wonderful to see them. I am looking forward to some hugs and fun and them meeting Siobhan. Kieran wants a water pistol fight with Angela, He has been waiting for this moment for a long time.

I have been watching the great sewing bee and getting the bug again. It has insprired me to get my sewing machine out and make something. I have decided my first thing will be a jacket for Siobhan, she will design her material, so exciting.
I can't wait to get started.

I have an appointment with Dr D tomorrow afternoon.  I had a call from Dr TOF last evening, it was so ggod to hear from him, he is such a great Dr. He looked at my scan pics and said that my meso patch in the top right fissure is the same height as my TOF so it could be causing problems with me eating. I am now clicking when I breath, I can only like it to a pipe with air going in and out, it has a tarpaulin beside it and the tarpaulin is being sucked in when the air goes in. the hole (TOF) seems smaller although still open. He has suggested a barium swallow and an endoscopy. He has said he will liaise with Dr D and Dr Dp who is the gatsro Dr in Derriford. What a team I have behind me : )


This might explain my TOF a bit more. I am figure 4 the 4% of 100 babies born with TOF have this. Richard, my son was born with figure 2 84%, this is the most common form of TOF. Without the operation to correct this the day after he was born, Richard would have died of starvation, Malnutrition so thank goodness for Dr's like Dr TOF who are so very dedicated to changing this. TOF has moved on a lot since even Rich was born, Dr's are learning new techniques all the time and I was happy to put myself forward to try the clips. They didn't work, they seem to have fallen off. Trial and error. How else will they learn about this. the problem with my TOF is that it can't be seen by looking down the gullet, it is around a corner. A difficult one but one that may be accomplishable. I'm not giving up and I know Dr TOF won't. Onwards and upwards.

Love and strength is sent to all fighting this rotten disease and love to those in pain from losing their hero's.

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