It has been a while since I have posted, so here is just a quick update. I have seen the bone man now. He has had me undergo some nerve function tests. It seems that the disc that is at the top of my spine pushing against my spinal cord is causing problems for me. I will herar his outcome on the 1st of April.
My body has forgotten how to produce the vitamin B12. to compensate that, I have had to have a course of 6 B12 injections to build it all up. And possibly all I would need after the levels have picked up again are booster injections every 3 month.
Best news of all I have kept until last. The hematology consultant today said the best word that anyone can hope for. He said that I have reached REMISSION - yeah that's right REMISSION
I am floating now that's a word I so wanted to hear after all this time. Happiness for me today. Long may it continue.
Thursday, 11 March 2010
Tuesday, 15 December 2009
Bone Man
I visited the Bn man last Monday 7th December. He said the damage to my spine had nothing to do with my Myeloma which is good news.
The problem seems to be skeletal which is old age, not helped by the fact my tretmnt has left me less active and unable to do much excercise. that has left the muscles in my back weak. As time goes by perhaps they will build up in time.
At least now i know why i get all of the problems
The problem seems to be skeletal which is old age, not helped by the fact my tretmnt has left me less active and unable to do much excercise. that has left the muscles in my back weak. As time goes by perhaps they will build up in time.
At least now i know why i get all of the problems
Tuesday, 24 November 2009
Someone listened to me rant
Someone must have listened when i went to my last clinic appointmentt. The consultant worked his magic I have now got an appointmenrt to see the bone man. 7th December
December is a busy month i have Cancer clinic on the 3rd. Bone man on the 7th and bloods on the 11th at my docs. this week i have my swine flu injection too. I'm going to be like a pin cushion for two weeks.
At least someone listened and hopefully i will get sorted out now.
December is a busy month i have Cancer clinic on the 3rd. Bone man on the 7th and bloods on the 11th at my docs. this week i have my swine flu injection too. I'm going to be like a pin cushion for two weeks.
At least someone listened and hopefully i will get sorted out now.
Wednesday, 11 November 2009
Why Wouldn't She Listen
On Thursday the 5th November I went to m clinic armed with some questions I needed answering concerning my back.The stand in Registrar the 7nth i have seen since Simon moved on asked me if I has seen Mr Cross? When I said no she said thats right it said in his letter that he didn't need to see you.
I looked puzzled by this comment and she asked why so i told her. I don't see why he has said that he doesn't need need to see me, I know i have a spinal condition that doesn't need surgery but i have a lot of questions to ask about the pain the future etc.
Her reply was simple, I am not a bone expert so i can't answer your questions. I asked who can and was told Mr Cross. Who by the way i pointed out didn't want to see me. I asked if she could ring him for me instead of sending a letter. I was told I don't have time I have a room full of patients to see and I haven't read your note properly.
Imagine how that went down.... i asked why she hadn't read my notes if she was seeing me. I was told because it a busy clinic and she was running late. I asked again about my pain and my future. I was told this isn't getting us anywhere I suggest we move on and talk about your Myeloma. (PP untraceable. Neutrophills 1.3)
I told her not to be bothered it's obvious she wasn't interested in me as a patient. Her reply was you are all important. I asked her if that was the case why couldn't she ring the Bone mans secretary for me. her reply again was I am busy.
I told her if she can't be arsed then I cant give me my next appointment and told her i never wanted t see her again. She promised to ring me at 1.30 that afternoon to tell me she had contacted the bone people. she actually rang at 4.55pm. when i pointed that out she told me not to be awkward as she had had a long hard and arduous ward round and she didn't need ant grief from me.
in reception after my nurse had ran out to hold me back I broke down in tears saying she isn't listening to me she isn't bothered about me. All she wants is this room cleared.
Well a consultant rang me next day and asked if i wanted to talk to him. I went to see him armed with another list of questions. He said he couldn't answer them all, but did answer some. He offered to ring the bone man and get the answers to he rest for me. he asked me if i want him to ring me with the answers or just tell me in the next clinic. I opted for the clinic, he then asked what i wanted to do about the registrar, told him never wanted her anywhere near me again. He said he would make sure that happened.
I looked puzzled by this comment and she asked why so i told her. I don't see why he has said that he doesn't need need to see me, I know i have a spinal condition that doesn't need surgery but i have a lot of questions to ask about the pain the future etc.
Her reply was simple, I am not a bone expert so i can't answer your questions. I asked who can and was told Mr Cross. Who by the way i pointed out didn't want to see me. I asked if she could ring him for me instead of sending a letter. I was told I don't have time I have a room full of patients to see and I haven't read your note properly.
Imagine how that went down.... i asked why she hadn't read my notes if she was seeing me. I was told because it a busy clinic and she was running late. I asked again about my pain and my future. I was told this isn't getting us anywhere I suggest we move on and talk about your Myeloma. (PP untraceable. Neutrophills 1.3)
I told her not to be bothered it's obvious she wasn't interested in me as a patient. Her reply was you are all important. I asked her if that was the case why couldn't she ring the Bone mans secretary for me. her reply again was I am busy.
I told her if she can't be arsed then I cant give me my next appointment and told her i never wanted t see her again. She promised to ring me at 1.30 that afternoon to tell me she had contacted the bone people. she actually rang at 4.55pm. when i pointed that out she told me not to be awkward as she had had a long hard and arduous ward round and she didn't need ant grief from me.
in reception after my nurse had ran out to hold me back I broke down in tears saying she isn't listening to me she isn't bothered about me. All she wants is this room cleared.
Well a consultant rang me next day and asked if i wanted to talk to him. I went to see him armed with another list of questions. He said he couldn't answer them all, but did answer some. He offered to ring the bone man and get the answers to he rest for me. he asked me if i want him to ring me with the answers or just tell me in the next clinic. I opted for the clinic, he then asked what i wanted to do about the registrar, told him never wanted her anywhere near me again. He said he would make sure that happened.
Sunday, 25 October 2009
Still have pain
Well I have had another month with untraceable paraprotien in my blood which is good. But when i mentioned my back and the fact that I haven't seen the bone man, the consultant said that he would ask a Secretary to ring them. Mind you that was only after he had said he would write another letter to chase him, and i said it's ok i will ring him because i was sick of waiting.
the Secretary did ring and then rang me back. it would appear though i have pan the bone man doesn't want to see me because i have no malignancy.
how does he know that i don't want to see him.
I am in pain and have loads of Questions and am getting very angry now. someone best answer them on the 5th of November.
the Secretary did ring and then rang me back. it would appear though i have pan the bone man doesn't want to see me because i have no malignancy.
how does he know that i don't want to see him.
I am in pain and have loads of Questions and am getting very angry now. someone best answer them on the 5th of November.
Wednesday, 30 September 2009
Still No News
Well it's been forever since I told my consultant that my back was hurting. I know he sent me for the MRI but in august he told me he was referring me to the Bone Man.
Here we are just getting into October and I still haven't heard from this mysterious bone man. I do know my back hurts when I sit, stand and walk. What I don't know is what he is going to tell me that I can do to bring some relief to it.
Ho Hum, I am back at Cancer Clinic on the 8th October so watch this space as they say.
Here we are just getting into October and I still haven't heard from this mysterious bone man. I do know my back hurts when I sit, stand and walk. What I don't know is what he is going to tell me that I can do to bring some relief to it.
Ho Hum, I am back at Cancer Clinic on the 8th October so watch this space as they say.
Thursday, 10 September 2009
OUCH !!!
Well I went to hossy for my monthly blood check, I was determined to find out what the results of my MRI scan is. The scan was in June and despite me asking in the July clinic at which I was told that they can take some time but my stand in doc would chase them and let me know.
It got to August clinic and still no word, so I made my mouth go a little. This time it was my own specialist that said he would chase it and ring me. Ring me he did, but he said that rather than tell me over the phone he would tell me in clinic if we didn't meet before. but there was an unusual degenerative condition there that he could see. He would prefer a bone man to look at it.
I have spent all of August wondering what he means, what is degenerative and what spinal condition. When was the bone man going to contact me and what the heck does all of this mean. My head has been in and out of me like you wouldn't believe.
Today the heamo asked as soon as I walked in have I seen the bone doc..... no i replied should I have he hasn't contacted me. do you know what it said about your scan he asks............. no you wouldn't tell me on the phone i said. Ah.... he said. well, it looks like the disc at the top of your spine is pushed in and resting on your spinal cord and there are three discs in your lumber region that are crumbling. But the good news is it has nothing to do with your Myeloma.
Imagine my head now. What is my future. It gets harder to fight and fight. I thought being told that you have had four clear months of this Cancer I was doing well. But it looks like you are given something good then its grabbed from you and you get something bad to deal with again.
OK that's it I've had my rant
It got to August clinic and still no word, so I made my mouth go a little. This time it was my own specialist that said he would chase it and ring me. Ring me he did, but he said that rather than tell me over the phone he would tell me in clinic if we didn't meet before. but there was an unusual degenerative condition there that he could see. He would prefer a bone man to look at it.
I have spent all of August wondering what he means, what is degenerative and what spinal condition. When was the bone man going to contact me and what the heck does all of this mean. My head has been in and out of me like you wouldn't believe.
Today the heamo asked as soon as I walked in have I seen the bone doc..... no i replied should I have he hasn't contacted me. do you know what it said about your scan he asks............. no you wouldn't tell me on the phone i said. Ah.... he said. well, it looks like the disc at the top of your spine is pushed in and resting on your spinal cord and there are three discs in your lumber region that are crumbling. But the good news is it has nothing to do with your Myeloma.
Imagine my head now. What is my future. It gets harder to fight and fight. I thought being told that you have had four clear months of this Cancer I was doing well. But it looks like you are given something good then its grabbed from you and you get something bad to deal with again.
OK that's it I've had my rant
Monday, 31 August 2009
New Challenge MRI Results
I got sick of waiting for the Doctor to ring me with the results of my MRI scan. he said he would chase them during my last Cancer Clinic appointment, that was 6 weeks ago. It is now ten weeks since my scan.
I rang my specialist nurse Anita, who told me that the results were there but she couldn't interpret them. She would have to ring a Doctor who would get in touch with me. Simon my consultant rang me and apologised there has been some mix up and i should have been told the results sooner.
It seems that the results now show that I have something called a degenerative spinal condition. according to Simon this could be anything from Arthritis to a dissolving of the discs. It all sounds very big and horrible to me. I do have back pain, I do stumble when I walk and my hip hurts after being on my feet for a while. All of these Simon says could be factors in the condition that I now face.
Simon is refering my scan to a bone man for further analysis and has suggested I dont worry too much until we know for definate what it is that I am facing. (Easy for him to say). Well I am worried and I am thinking about it, it has been two weeks now since my conversation with Simon and the bone man still hasn't been in touch. I have a Cancer Clinic appointment on the 10th of September, if I don't hear anything before I think the big guns will come out. ITS MY LIFE AND I WANT TO KNOW WHATS HAPPENING TO ME.
I rang my specialist nurse Anita, who told me that the results were there but she couldn't interpret them. She would have to ring a Doctor who would get in touch with me. Simon my consultant rang me and apologised there has been some mix up and i should have been told the results sooner.
It seems that the results now show that I have something called a degenerative spinal condition. according to Simon this could be anything from Arthritis to a dissolving of the discs. It all sounds very big and horrible to me. I do have back pain, I do stumble when I walk and my hip hurts after being on my feet for a while. All of these Simon says could be factors in the condition that I now face.
Simon is refering my scan to a bone man for further analysis and has suggested I dont worry too much until we know for definate what it is that I am facing. (Easy for him to say). Well I am worried and I am thinking about it, it has been two weeks now since my conversation with Simon and the bone man still hasn't been in touch. I have a Cancer Clinic appointment on the 10th of September, if I don't hear anything before I think the big guns will come out. ITS MY LIFE AND I WANT TO KNOW WHATS HAPPENING TO ME.
Monday, 24 August 2009
Frustrating
Just when I start to think that I'm doing OK. What happens? My body slaps me in the face and tells me it isn't. Yesterday I got up at about 9.30 had breakfast and was asleep again before 10.30.
Not only that but I slept most of the day up until 7 ish in the evening. Gorr it's so frustrating to think a couple of years ago all I would have is an afternoon knap, not now my body tells me it is gonna sleep all flippin day. Ho Hum .
Not only that but I slept most of the day up until 7 ish in the evening. Gorr it's so frustrating to think a couple of years ago all I would have is an afternoon knap, not now my body tells me it is gonna sleep all flippin day. Ho Hum .
Sunday, 9 August 2009
First full Week
Last week was my first full week at work. By full week I don't mean monday to Friday. I mean a full working day full week. 8.00 am until 5.00pm.
I thought that I was ready for it, but my body knows it isnt. So maybe it's time that i listened to it and rested for a while. So I am going back to workinf 10.00 till 5.00pm for a while. To see how I cope.
I thought that I was ready for it, but my body knows it isnt. So maybe it's time that i listened to it and rested for a while. So I am going back to workinf 10.00 till 5.00pm for a while. To see how I cope.
Wednesday, 22 July 2009
More Work
I have extended my working day from: 10am till 3pm now 10am till 5pm. I didnt think such a small increase would tire me so much but, after only three days I feel wrecked.
Ah well I suppose that it shows that my body still needs time to recover. But my finances say it's time to work, it's such a fine balance isn't it.
Ah well I suppose that it shows that my body still needs time to recover. But my finances say it's time to work, it's such a fine balance isn't it.
Thursday, 16 July 2009
A Result
My consultant told me today that there are no traces of protein in my blood and there hasn't been since my Stem Cell Transplant.
I cant help feeling that I am on a high. Floating like a balloon on helium.
No MRI results though so that was a downer, but nothing is going to stop me enjoying my moment.
I cant help feeling that I am on a high. Floating like a balloon on helium.
No MRI results though so that was a downer, but nothing is going to stop me enjoying my moment.
Wednesday, 15 July 2009
Wondering
Well tomorrow I get to see my consultant again. I get my blood taken, he asks how i am doing. This time I should get my MRI results. So we will wait and see.
The thing that worries me most is, both my daughters have friends that are either in Quarantine or have suspected swine flu. I need to get some info now and fast I think.
If I said I was a little scared to think what might happen if I caught it, it would be an understatement.
The thing that worries me most is, both my daughters have friends that are either in Quarantine or have suspected swine flu. I need to get some info now and fast I think.
If I said I was a little scared to think what might happen if I caught it, it would be an understatement.
Sunday, 12 July 2009
Waiting again
I had an MRI scan 2 weeks ago now and am waiting for the results. I suppose i will get them when i visit my consultant on Thursday. I hate the waiting and I hate the fact they don't send you any letters, just make you wait.
This weekend I ventured out on my own in my car, I drove to Stoke, only 183 mile there and the same back. But I did stay the weekend before traveling back.
I did it but really felt shattered at the end of the journey, maybe it was a little too far to drive on my own. but you gotta set your goals haven't you.
This weekend I ventured out on my own in my car, I drove to Stoke, only 183 mile there and the same back. But I did stay the weekend before traveling back.
I did it but really felt shattered at the end of the journey, maybe it was a little too far to drive on my own. but you gotta set your goals haven't you.
Monday, 22 June 2009
Radio Star
I was asked by the news team at Sun-FM if i would do a radio interview today. to help promote Myeloma awareness during National Myeloma awareness week.
It should be aired in the next couple of days
It should be aired in the next couple of days
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