I am dropping to bits a wee bit faster than I should be. Have had a terrible night's sleep, the pain in my centre chest disturbing my sleep, even coming to me in my dreams. During the course of the night I have taken several morphine tablets to relieve it but to no avail. Guess the mesothelioma around the pericardium is annoyed or irritated, hence giving me pain. I know our Australian Steve is having the same trouble but I don't think we carry out the same type of routine here in the UK, anyway I don't want to spend a couple of days in hospital. It usually clears on its own - rather it used to clear on its own!
I managed to get into work yesterday and enjoyed it, I didn't think about meso and what it was doing inside my body. In fact just now I have realised why my chest is so poorly, I was lifting files from my drawers to my desk as I went through work etc. Maybe I have just stretched a bit of cancer!! Seriously though, it was quite nice to be at work and get on with something other than me.
I had a note from another carer telling me about a Dr David Breen (stomach specialist) who does cryo-ablation in the UK, operating out of Spires Southampton. So I emailed the doctor yesterday. He said he didn't do small tumours in the stomach area only on large organs. So being me I emailed him back and mentioned Prof Suh and Dr Abtin and the fact that Dr Abtin was willing to come and demonstrate the use of cryo on lungs. This was the good doctors reply, I have emailed again apologising if he thought I was undermining him.
Dear Mrs Egerton
I need to be clear.…we have one of the largest cryoablation practices in the world and second only by volume to the Mayo Clinic in Rochester.
We tend to use microwave for lung tumours and Cryoablation for focally chest wall-adherent disease.With all due respect I almost certainly have considerably more experience in this arena than Dr Abtin. Our aim is always to do the right thing by the patient and deploy therapies appropriately.(My anaesthetist partner- Dr McGill - is copied in above.)
My understanding is that you have peritoneal-based disease in the abdomen which will likely not be suitable for ablation.
I do hope he will come back to me, maybe he could zap the 3 solid tumours in my right lung. That would be a blessing as it seems its the right now that has gone crazy. If chemo can't kill them this will.
My tummy has expanded slightly but I am praying the tablets will start doing their bit and keep it slow growth. I feel like a chemist has moved into our kitchen with all the different tablets etc.
I also heard from a lady last night who is newly diagnosed. She has contacted Jason Lester at Cardiff and may be allowed to go onto the trial. This is the vaccine that works with Alimta and cisplatin but for first time use only. She rang me out of the blue and we spent some 30 minutes talking about treatments etc. Again, although newly diagnosed her oncologist hasn't offered her much advise, more so it took 9 months to diagnose. She has spent the last months researching as much as possible and I truly hope that the trial in Cardiff can work and this vaccine stops are reoccurrence of the meso. If it works on first users, who knows there could away it targets the cells when they return and turns nasty Mr Meso to mush. Always hope. Needless to say she is from the North East and for them to take so long to diagnose, even after a VAT is terrible. She said she thought it maybe mesothelioma but was ignored.
Well our niece and her boyfriend came over last night to stay, they were heading for the airport early hours, 2.30am from ours, it would have been 1.00 from their home town. Hubby took them up to Newcastle Airport and we will both pick them up in a couple of weeks. The fear over Egypt and the problems out there has had the two of them on edge but Thomas Cook would not let them change destinations and at one point last week I think they were going to just not show up. Anyway after checking the news constantly they have gone. I do envy them starting out on life, even more so the fact they are going to the hot sunshine rather than the cold weather we are having. Although this morning the sky is blue.
I had planned on going in this morning again, but I need this pain to subside. It is nearly 9 am and I have so much work to do, my auditors are in this week checking my trial balances so we can finish some accounts. Although still have plenty more to do! Have taken another 40 mg of morphine, it has taken the edge off, so far since 1 am I have taken 100 extra, although the other 60 was 20 at a time.
What I hate is if one thing improves another goes wrong with this cancer. The fight is back but unfortunately the pain is too. I did read once that if chemo doesn't work on old cancer it could escalate its growth. My right lung was old cancer that never moved until recently, maybe the chemo just ignited it - but because oncologists don't really follow our progress I doubt this would be recorded or ever reviewed.
On that note its time to end. May not be good reading for you but it's what is going on. I would love to open my blog at the moment and write something great like I bounced out of bed feeling the sun on my face and ran down the stairs, dance in my step! Boy do I wish it was like that.
To my fellow fighters and carers - have a good day - smile at yourself just once to ease the tension you could be feeling.