Wednesday, 4 September 2013

Home - Safe and ballooned

I have woken this morning from sleeping in my own softish bed and my back feels like new, I was expecting to be crippled this morning but, touch wood, all I can feel is bile sitting somewhere in my chest.  The stomach has stayed as yesterday, no larger but no smaller.
After having to take morphine for chest pain yesterday before we actually flew I was dreading today but maybe things are looking up.  The only other things I am suffering are my eye's are out of focus, this always seems to happen now after I return from holidays, my mouth is extremely dry and I have a headache.  The headache is probably due to the extra morphine taken yesterday and last night at bedtime.  I did check my weight on the scales, I have gained nearly 8 lbs, and I know it isn't down to food, that's quite a lot in one week.
I came home to a message from Dr Vish's secretary, he has arranged to see me at 5.40 on Thursday night, this is to discuss the procedure they plan to carry out, which will take place at James Cook Hospital.  I only hope it's sooner rather than later. 
The mental torture I put myself through about flying didn't happen, that is a relief in itself.  I said to hubby on the plane coming back, I feel so good now, maybe we could have stayed on board.  He gave me one of those looks and reminded me I had taken 40 mg of morphine because I was doubled over with pain at 11 am that morning.  I couldn't remember!  I must admit I did keep nodding off on the plane so maybe my memory was wiped.  I could see the relief of his face as we were getting closer to home and I was ok.  Although he doesn't go through physical pain, his mental torture must be terrible.  How do they cope when they see us suffering and now there is nothing they can do but hug us or tell us everything will be fine?
I hope I have brought some nice weather home, looking out we have that mist we had back in 1975 and 1976 when we had glorious long summers ... that would be nice feeling the warmth still on my bones while waiting to see what is going to happen.
Today I am going to rest up, once over the packing would have been done as soon as I came through the front door, if it stays in the cases another day I don't care.  I think both of us need to relax and get over the stress of the last two days.
I will start my letter writing and battle tomorrow.  I am going to write to the Trust and explain that I am not ready for the scrap heap.  Maybe I may even have to revaluate Dr Vish if he also thinks that, but I won't know that until after Thursday's meeting.
In all honesty we don't know whether the meso is in the stomach via the lymph nodes or by contact with my false diaphragm, or whether it is caused by something else.  The bile can do damage, especially the amount I have floating around in the morning.  At Darlington Memorial they did take away fluid to be sampled yet no results have been sent to the doctors or as I keep wittering on, no outpatient appointment has been sent to discuss it.
I have received many words of support from the mesothelioma network of warriors and I really appreciate their support and advice.  No one truly knows what this disease is capable of doing before it actually robs us of our last breath, I keep being told I am in uncharted waters - yet doctors don't want to record what happens.  If this is the case then how will any medical details ever be known and help others in this terrible predicament.
On that note I am ending here for now. 


Anne H said...

Hi Jan. glad you're both home. You'll feel safer here. I feel really angry on your behalf. The medical profession could learn such a tremendous amount from the warriors like yourself who have held this awful disease at bay against the odds. This is not going to go away!!! They should be learning as much as possible form you - particularly as you are obviously so well informed and willing to share your experiences. This applies also to the nursing side. They need to be aware of all the symptoms and feelings you go through. We had a super team of meso nurses when we were with Papworth. When we were sent home we had an awful arrogant MacMillan nurse. That was a real shock. I expected far more from her. They should all be educated about meso, it's symptoms and the fact that the patient DOES know what is going on in their body. I really hope you win your battle with the medics. Huge hugs xxyx

Jan said...

Thank you, I am so pleased you managed some excellent help from the medical profession.
They could learn so much from a lot of warriors out there but seems they still hope we can be swept under the carpet and forgotten about.
My anger has risen, but writing and complaining can also have the opposite effect and you get ignored completely or treated even worse. I think this time though I will get on the soap box and start stirring things. I guess because I wasn't that nice about the chemo lounge in Bishop made me enemies - I wonder if this is blacklash from that.

Anonymous said...

Oh my warrior Jan. Pray for you every single day, You are truly so strong, so brave, so loving caring and the most beautiful person inside and out. You are inspiriring and make me feel so humble. May the pain ease for you my wonderful friend. Love you very much X's Mary