The last ten days or so have been a nightmare for me. I had my hospital appointment on the 12th of January, the usual anxieties were in my mind and my tummy was churning. No change there.
This time the consultant said there has been a spike in my protein levels in my blood, but it was in the next band across. I wasn't sure what that meant but he said not too worry. The only thing which really settled in my head was protein levels in my blood had spiked. My friend and I left the room not floating like we had expected but flat, down and teary. We met one of the nurses in the corridor, she told me not to worry but the seed had been planted already I was starting to cry and think bad things my mind was racing.
We went for our usual lunch at our favourite place only this time we were in tears. We ordered our meal, we didn't enjoy it in fact we left without finishing it. Much of the rest of the day was a mish mash of tears and thinky times. I rang my nurse who said I wasn't to worry too much about it as my consultant has requested to re-do the test and that it could be that the sample of my blood had been contaminated. That the next time it was tested the result probably will be good and that I should ring in a week to find out what the result is. We did have a few smiles but I still don't know how we got through that day. I thought that this whole horrible thing was starting to rear it's ugly head again, I know my friend felt the same.
So in the next ten days my mood was up and down, days filled with tears and emptiness and some days when even smiles broke through. Mostly they were flat, my friend felt the same as I did. We asked each other countless times a day. How do you feel? our answers were usually the same I'm okay but....
A week passed and we were picking ourselves up and got ready to ring my nurse. Can you imagine the feeling when the nurse said. Result pending can you ring back on Monday it should be in then. we spent another weekend worrying and trying to pick each other up. I was so teary on the Sunday it was difficult to stay level headed that day.
Monday came and it was time to ring the nurse. My protein levels had gone up again. How could they if my sample was contaminated last time surely this time they couldn't be. What does this new band mean? I asked. I'm not entirely sure said my nurse but I will email the consultant and ask him then get back to you on Wednesday. I feel let down again this can't be happening what's going on? Who can help me? My friend suggested looking on the Internet for some answers. I did when I got back to work but it was all in medical speak and didn't make much sense. I rang the help line. I did get an explanation that they felt the new band may not be bad thing (it may be down to light chains).
I'm not sure who suggested it why or when (my head is spinning now) but why don't I ring my consultant and ask for a simplified explanation. I made an appointment for a telephone call with his secretary who said she would get him to ring me as soon as he could.
He called me this morning I explained how I felt and that I was confused and wondered if he could clarify it for me simply.There is a bad band of protein which has bad cells in it called the gamma band. In that my protein levels remains UN traceable. next to it is a band called the beta band and that has good protein cells in it. My protein has risen in this band though they remain well within the normal range. They could have risen for a number of reasons.but he is convinced that it isn't because of bad protein. He said that 99% of the plasma cells are likely to be good cells. The reason why he is convinced are that my white and red blood cells, my haemoglobin and plasma levels have remained stable and I have no bone pain or tiredness. in his words. All is good!
I rang my friend to tell her the good news, we both felt like the weight had been lifted and that we were floating again.More tears but this time of happiness and joy. How happy are we now. I bet you can guess. Floaty Floaty Happy Happy.
Tuesday 24 January 2012
Sunday 1 January 2012
Jools Rools
I went with a friend to see Jools Holland at the City Hall in Newcastle. It was the Wednesday before Christmas. We had the seats we wanted with the best view, I'm not telling you exactly where or else you will all want them and when we want to go next I won't be able to get the seats.
Anyway in we went the seats we like are upstairs so now for my mountain climb. Four big flights of stairs and quite steep. As usual I was conscious of people around me and me slowing them up, or worse they are thinking bad things about me having to be helped up them still.' Forget about other people'. I was told they aren't looking and to be honest they weren't its just in my head.
I got to the top in quick time, I think that I must hold the world record for assisted ascent of the stairs while clipping everyone of them with my right foot. It still doesn't like going up stairs. I have scraped all the polish off the toe of my right shoe. I wonder if you can buy shoes with on left shoe and two right ones, surly someone must do them like that.
We got to the top in pretty quick time, then I had one of them forgetful moments. Instead of turning left and climbing four more stairs to our seats as we should have done. I said it' this way and headed for the door through which we could see seats, lots of them. But not the ones we wanted, nope the way I had taken us meant we had to walk through between some rows of seats to find stairs that were almost as many as the last two flights I had come up. When we eventually got to our seats I was shattered and pleased I could sit down. But like my friend said. 'You almost ran up those stairs, this time you didn't have to stop on the way up either'.
The house lights went down the warm up act came on and he was very good, then after a while Jools Holland came on. He was fantastic my feet never stopped tapping all night long. I even managed to stand up and boogie woogie a couple of times. we had so much room we could spread our legs out, a few times I was almost horizontal. (Much to the jealousy of the tall man opposite who could hardly fit into the space between his seat and the one in front. He left his coat on all the way through the concert too, he probably couldn't move once he was sitting down). I don't think Jools minded me being stretched out, we could still see him.
When the concert finished we waited as we usually do until everyone had left, so that I could go downstairs without holding anyone up. More damage to my shoes on the way down. I will have to look for that supplier that gives one left and two right shoes.We had a short walk to the car then a slow drive back. we had a fantastic night.
Anyway in we went the seats we like are upstairs so now for my mountain climb. Four big flights of stairs and quite steep. As usual I was conscious of people around me and me slowing them up, or worse they are thinking bad things about me having to be helped up them still.' Forget about other people'. I was told they aren't looking and to be honest they weren't its just in my head.
I got to the top in quick time, I think that I must hold the world record for assisted ascent of the stairs while clipping everyone of them with my right foot. It still doesn't like going up stairs. I have scraped all the polish off the toe of my right shoe. I wonder if you can buy shoes with on left shoe and two right ones, surly someone must do them like that.
We got to the top in pretty quick time, then I had one of them forgetful moments. Instead of turning left and climbing four more stairs to our seats as we should have done. I said it' this way and headed for the door through which we could see seats, lots of them. But not the ones we wanted, nope the way I had taken us meant we had to walk through between some rows of seats to find stairs that were almost as many as the last two flights I had come up. When we eventually got to our seats I was shattered and pleased I could sit down. But like my friend said. 'You almost ran up those stairs, this time you didn't have to stop on the way up either'.
The house lights went down the warm up act came on and he was very good, then after a while Jools Holland came on. He was fantastic my feet never stopped tapping all night long. I even managed to stand up and boogie woogie a couple of times. we had so much room we could spread our legs out, a few times I was almost horizontal. (Much to the jealousy of the tall man opposite who could hardly fit into the space between his seat and the one in front. He left his coat on all the way through the concert too, he probably couldn't move once he was sitting down). I don't think Jools minded me being stretched out, we could still see him.
When the concert finished we waited as we usually do until everyone had left, so that I could go downstairs without holding anyone up. More damage to my shoes on the way down. I will have to look for that supplier that gives one left and two right shoes.We had a short walk to the car then a slow drive back. we had a fantastic night.
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