Thanks Alan, your words are a comfort to me. It's a possibility that others reading this forum could have similar experiences to relate, I hope not indeed, but with Cancer seemingly to be on the increase for all of us, the threat remains. These are the folk I would like to try to inspire.
I notice that others have begun to open up about their ailments, and I would love for them to give us their thoughts, and how they handled their own particular set of circumstances, to help others in the future, not only related to cancer, but other little nasties that do occur. It does not have to be all about me, and I am sure that Carol, who opened the thread would fully endorse.
Sleep is slowly returning for me, but only in 2 or 3 hour sections, but I do feel much better when it happens.
Originally Posted by: Dougie
In response to `others have begun to open up about their ailments`, I`ll tell you the other half of my medical problems Dougie.
My Primary Myelofibrosis is only half the story. I also have Dilated Cardiomyopathy, and I was told that I need open heart surgery to replace my Mitral Valve with either a mechanical valve or a Bioprosthetic Valve (made from animal tissue). I`ve had this heart problem for several years and used to go regularly to Stepping Hill hospital in Stockport for check-ups.
Then something changed when Christie Hospital informed the cardiac consultant at Stepping Hill that open heart surgery, and the fact that I would have to be put on a Heart-Lung Bypass Machine, would be too dangerous for me because of my Myelofibrosis. Then, around the end of 2015, my care was transferred to Manchester Royal Infirmary. I went for two appointments there, in January 2016 and February 2016 (when I had an MRI scan.)
Since then, nothing. The cardiac team at MRI seemed to have lost interest in me, I suppose because they could not operate on me.
Eventually, at the beginning of June this year the Christie consultant contacted the MRI cardiac team and persuaded them to send me an appointment. I was sent an appointment for 24th July, 16 months after my MRI scan. This appointment was cancelled a few days later and another one made for yesterday.
So I went yesterday, sat in the waiting room for an hour and a half, then a nurse came out and said that the cardiac consultant was not in today, and there were long delays to see another doctor. (I overheard a nurse saying to a colleague " why does his secretary make appointments when she knew the consultant would not be there?)
So, I and several others waiting to see him, walked out after being told new appointments would be sent.
So, basically, I seem to be stuffed. No operation can be done so I suppose I can`t blame the cardiac team for not sending for me. Although the Christie chap pointed out that at least they could review my medications, if nothing else.
Despite all this I feel well, I try to avoid walking up steep hills,or series of steps. Such as the 108 steps in Macclesfield, or the 500 odd steps up to Whitby Abbey. They are definately a no-no as anything like that makes me breathless.
So, while I am getting first class care at the Christie, it doesn`t seem possible to do anything about my heart.
Eric. Cheadle Hulme, Stockport.