Last night and today must be the worst days of this whole thing so far for me. I just keep crying with anger, my head feels like it is going to explode.
Well as I mentioned in my first post Mike was due to see the consultant on 26th Feb, but after having his x-rays the hospital sent an appointment for 17th Feb. which we attended thinking they knew best. We met a very nice lady (I actually mean girl, which just goes to show how old I'm feeling) who asked us why we were attending her clinic, to which we replied we had no idea as the appointment had been sent and we hadn't thought to query it. She had a look at Mike's x-rays and pointed out the pitting on the skull (looked like tiny miners had taken their pickaxes to it), the no longer square vertebrae (her words not ours, she did correct herself and say oblong) and the dark patches starting to appear on other bones. She told us it was stage 2 igG kappa myeloma (we were feeling left out as everyone else seems to know such things) and said she would like to start treatment straight away, but wasn't allowed to as:
1)Mike had to be discussed in some sort of meeting.
2) His consultant is currently in India (has been for nearly 3 weeks!)
We had no choice it seemed other than to say ok and we'd be back on the 26th.
I'm not sure why I did it, but as we were leaving I thought I'd check that the appointment still stood. NO it had been cancelled. NO there wasn't any appointments at that clinic available. In fact we still haven't been given an appointment. The receptionist promised she would sort something out and call us, we are still waiting. It is as if no-one cares. The support staff (that's what they all seem to be now) act as if an appointment in a month is good enough, they don't seem to understand what it is that Mike has got. So just how urgent is it that Mike starts on his treatment with stage 2? I'll keep you all posted when I have more news.
Lorna
P.S. We have eventually managed to get his original appointment back, just as well really as we were planning to arrive with sandwiches and a flask and sit there all day if we had to.
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Wow, our experience was very different in that we turned up at the private hospital having no idea what to expect, myeloma having been mentioned for all of long enough to say it and then dismissed as I wasn't old enough. We were told it was myeloma, and that I was the second youngest person (other 36) he'd come across, Bernard asked how the she was doing to be told she was 'no longer with us'. And then I was straight off to local NHS hospital. We didn't even know that it was manageable but not curable until the MacMillan nurse spoke to us later that afternoon. When I went for radiotheraphy the doc asked what type I'd got and I just looked at him more vacantly than normal. The nurse said funnily enough I had already been discussed in a meeting and that the way things work nowadays rather than one doc rubbing his head and suggesting a treatment, local and national studies are looked at and the most effective treatment in the relevant age group is applied. I believe its called a protocol.
ReplyDeleteI cannot even start to imagine how you must have felt being told you had myeloma at such a young age along with the news of the other young victim.
ReplyDeleteIt would appear that Mike's doctor wants to keep him to himself. (Well he is very special I suppose, at least he is to me lol.) Maybe things will change as time goes on. I think the thing that upset me most was that the doctor we saw yesterday desperately wanted to start treatment, but couldn't and when we found out the appointment had been cancelled the receptionist and the health care assistant didn't seem bothered that it meant a delay in treatment. I suspect it's because the haematology patients share a clinic with the heart and lung patients.(gosh they make me and Mike feel young!)
If it's the same as where we go what's the blood clinic on a Friday morning is the foot fungus clinic in the afternoon, hemarroids on a Monday, etc but with the same receptionist and health care assistants so some of them probably think a bit of Preparation H will sort it out. I realised last night my comment may have seemed a little 'I received treatment STRAIGHT away'. What I maybe should have pointed out is that alhtough I have no idea of my staging at the time of diagnosis and still don't, and without wishing to sound whingey, I could hardly walk and was in a considerable amount of pain. Whereas now I'm a little too perky for my own good sometimes.
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