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
Tuesday 15 December 2009
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
Sunday 14 June 2009
Tired
This weekend I have been so tired, I don't know why. I slept most of Saturday, when it came to bed time I didn't feel tired and stayed up until about 1.00am. That wouldn't have helped any.
Tuesday I was back in the chemo day unit, not to have chemo but to have a rash that I have developed looked at. It is so itchy and results in bumps under the skin when I have rubbed or scratched. The consultant thinks that I am allergic to something and gave my intravenous steroids to ease the effects. They seemed to work well but now It has returned. Going to see my own GP this week to see if they can sort it out for me.
I start the third week of work tomorrow maybe it's that, that is making me feel so tired. But I need to return to some normality. Some good news is that I have been approached by a local radio station to do a piece on air about Myeloma during national Myeloma week next week.
Tuesday I was back in the chemo day unit, not to have chemo but to have a rash that I have developed looked at. It is so itchy and results in bumps under the skin when I have rubbed or scratched. The consultant thinks that I am allergic to something and gave my intravenous steroids to ease the effects. They seemed to work well but now It has returned. Going to see my own GP this week to see if they can sort it out for me.
I start the third week of work tomorrow maybe it's that, that is making me feel so tired. But I need to return to some normality. Some good news is that I have been approached by a local radio station to do a piece on air about Myeloma during national Myeloma week next week.
Tuesday 2 June 2009
Back To Work
I went back to work yesterday, with the agreement of my consultant I am only working part time. I had thought that I had regained my fitness, imagine how surprised I am that I feel so tired.
It feels as though I had never been through the massive treatment that i had in March. I don't know why this surprised me i knew that it would be difficult when I returned to work. I will have to build myself up a little at a time. It's a little like taking exercise. One step at a time.
It feels as though I had never been through the massive treatment that i had in March. I don't know why this surprised me i knew that it would be difficult when I returned to work. I will have to build myself up a little at a time. It's a little like taking exercise. One step at a time.
Thursday 21 May 2009
More Good News (I think)
I had an appointment with my consultant this morning. He is more than happy with my progress, he suggested that I can return to work on a part time basis with definatly no lifting.
I told him about my walking, the pains in my knees and that one foot drags sometimes causing me to stumble. After some small exercises in the consulting room. He decided to send me for an MRI scan on my spine.
So good news in one way bad in another.
I told him about my walking, the pains in my knees and that one foot drags sometimes causing me to stumble. After some small exercises in the consulting room. He decided to send me for an MRI scan on my spine.
So good news in one way bad in another.
Sunday 10 May 2009
Aches and Pains
I seem to be getting increased aches and pains. pain in my back, aches in my calf muscles and pains in my knees. I feel sure that the aches and pains in my knees and calf's could be to do with the exercise, but my back is worrying me.
I have an appointment with my consultant on the 21st of May, so I will chat about it then.
I have an appointment with my consultant on the 21st of May, so I will chat about it then.
Monday 27 April 2009
Sussed it out
I have sussed it out, the reason why i felt flat over the weekend. It was my cancerversarry on Friday. Yeah that's right the first anniversary of me being told that I had this blooming awful cancer.
Well at least that's sorted, now i am like Tigger, bouncy, bouncy, bouncy....... lol
Well at least that's sorted, now i am like Tigger, bouncy, bouncy, bouncy....... lol
Saturday 25 April 2009
Feeling Flat
I Just feel as flat as a fart today and yesterday, don't know why. I am not worried about anything I feel stronger than ever. Just must be one of them things
Friday 17 April 2009
Happy Birthday To Me
Well it's my birthday today I am 50yrs old. To celebrate it I had to attend hospital for my routine blood tests (all turned out fine and are almost back to normal). I also had my Hickman line removed, which is quite sore now.
However, I count this as one step closer to getting better.
However, I count this as one step closer to getting better.
Thursday 16 April 2009
A bit flat
Don't know what it is today, I just feel a little flat. I have a hospital appt tomorrow for bloods and the removal of my Hickman line. But that doesn't usually bother me.
It is also my birthday I will be fifty. But birthdays don't usually bother me either. Maybe all the exercise I have taken this week has caught up with me. I have slept a lot today.
It is also my birthday I will be fifty. But birthdays don't usually bother me either. Maybe all the exercise I have taken this week has caught up with me. I have slept a lot today.
Wednesday 15 April 2009
Chuffed to little naffy breaks
Yesterday I managed to walk about one mile in a round trip to the village and back. Yes I was tired and I did fall asleep to recharge the batteries.
Today wow... my wife Ann said that Steven our son in law was going to take her to Asda. Can you imagine the surprise when I heard my voice saying. 'I will come with you.' I know I was certainly surprised.
Anyhow, I did go with them. I did walk all the way round the Asda Superstore (not just a small shop). And yes I am no officially knackered.................. time for some shut eye.
Today wow... my wife Ann said that Steven our son in law was going to take her to Asda. Can you imagine the surprise when I heard my voice saying. 'I will come with you.' I know I was certainly surprised.
Anyhow, I did go with them. I did walk all the way round the Asda Superstore (not just a small shop). And yes I am no officially knackered.................. time for some shut eye.
Thursday 9 April 2009
First consultant App, since my transplant
My appointment for my bloods today was at 9am. My Consultant app was for 10am. Not too bad considering it sometimes takes about 30 to 40 mins before I am seen in blood clinic. Today however, we set out from home at 8am giving us plenty of time to get there during rush hour. What happened in reality was we arrived in less than 25mins. A slow walk up to the ward from the car park only wasted 10mins.
So in I went for my bloods, there was one lady and myself in the unit. I looked at the clock 8.50am, mentioned to the nurse that I was due in clinic at 10am so she could take as much time as she wanted to. Then the consultant came in to the unit. He was ready as soon as the patients were clear. Said he would see me as soon as my bloods had been taken.
At 9.10am I was in the consultants room. Wow!! He informed me that all my blood levels had risen, except that I was slightly anaemic but not to worry about it. He was very pleased with my progress and would urge me to keep up the exercise and the walking. I was out of there by 9.30am and on my way home. Hooray for holiday traffic.
So in I went for my bloods, there was one lady and myself in the unit. I looked at the clock 8.50am, mentioned to the nurse that I was due in clinic at 10am so she could take as much time as she wanted to. Then the consultant came in to the unit. He was ready as soon as the patients were clear. Said he would see me as soon as my bloods had been taken.
At 9.10am I was in the consultants room. Wow!! He informed me that all my blood levels had risen, except that I was slightly anaemic but not to worry about it. He was very pleased with my progress and would urge me to keep up the exercise and the walking. I was out of there by 9.30am and on my way home. Hooray for holiday traffic.
Saturday 28 March 2009
Stronger every day
I have been to the hospital chemo day unit to have my bloods taken 4 times since leaving hospital. Each time I have been told that all my levels are on the up. my red and white cells up, my platelets up. Everyone is very pleased with my progress.
I feel stronger each day, better than yesterday my tiredness is waining and i can stay awake for longer periods now. Well that really depends on what i have done during the day. Ann took me to get some drawing material the other day, to revive my old hobby of sketching while I can't work. When I got home I slept for 2 hours.
If we walk for even a short distance I need to sleep to recharge my batteries. For someone who was a late night early morning bloke (after midnight before bed and up around six). I don't seem to get up until 10.00am no matter what time i go to bed.
I feel stronger each day, better than yesterday my tiredness is waining and i can stay awake for longer periods now. Well that really depends on what i have done during the day. Ann took me to get some drawing material the other day, to revive my old hobby of sketching while I can't work. When I got home I slept for 2 hours.
If we walk for even a short distance I need to sleep to recharge my batteries. For someone who was a late night early morning bloke (after midnight before bed and up around six). I don't seem to get up until 10.00am no matter what time i go to bed.
Monday 23 March 2009
Getting Stronger
I went into hospital on the 2nd of March for the start of my transplant. On the fisrt day they hit me with some massive chemo, Melphalin. Which apparently kills my bone marrow, cell and any cancer it can find. one of the side affects of this was I had to eat as many ice lollies as I could in the time it took to administer the treatment. I can't count the amount of times i had to go to the loo either.
Tuesday the 3rd was good. My transplant was on the 4th, i was transferred from Sunderland Hosp to the RVI at Newcastle Via an emergency ambulance with Blues flashing. (my first time in an ambulance and I was getting the royal treatment). The cells when they came back into my body had a strong smell of tomatoes and a similar taste, which hung around for a few days.
My bloods showed that i was still quite strong and was allowed home on day release for 3 days. But had to return every day for blood tests at 9.00 am.
On the Sunday I went into hospital complaining of feeling unwell, I wasn't allowed home this time. Instead straight back into my sterile room. I remember lots of nurses and doctors visiting me. But to be honest that is the last I remember until the Wednesday. I was told that having a temperature of 39.9 and no immune system did cause a stir. It is rumoured and i can't prove it, just what a nurse told me. That the overnight on call doc was camped out on my ward just in case.
I endured ten days of the tummy runs. Eventualy almost begging someone to stop them.
I still feel so tired and weak but everyday is different. I do feel stronger today, but have been very emotional during the last three weeks.
Tuesday the 3rd was good. My transplant was on the 4th, i was transferred from Sunderland Hosp to the RVI at Newcastle Via an emergency ambulance with Blues flashing. (my first time in an ambulance and I was getting the royal treatment). The cells when they came back into my body had a strong smell of tomatoes and a similar taste, which hung around for a few days.
My bloods showed that i was still quite strong and was allowed home on day release for 3 days. But had to return every day for blood tests at 9.00 am.
On the Sunday I went into hospital complaining of feeling unwell, I wasn't allowed home this time. Instead straight back into my sterile room. I remember lots of nurses and doctors visiting me. But to be honest that is the last I remember until the Wednesday. I was told that having a temperature of 39.9 and no immune system did cause a stir. It is rumoured and i can't prove it, just what a nurse told me. That the overnight on call doc was camped out on my ward just in case.
I endured ten days of the tummy runs. Eventualy almost begging someone to stop them.
I still feel so tired and weak but everyday is different. I do feel stronger today, but have been very emotional during the last three weeks.
Wednesday 25 February 2009
What a Week
So far this week I have had a complete skeletal x-ray, a kidney function test. Before Friday I still have to have a pulmonary function test and an echo cardiogram. all on different days.
Why cant hospital departments get their heads together when booking appointments I am shattered.
I have to be in Hospital for 9.15am on Monday bed or no bed. the care team will make sure when my chemo is finished my room will be free.
Why cant hospital departments get their heads together when booking appointments I am shattered.
I have to be in Hospital for 9.15am on Monday bed or no bed. the care team will make sure when my chemo is finished my room will be free.
Sunday 22 February 2009
Transplant
Well, I have the dates for my Stem Cell Transplant. It is the 4th Of March 2009. But before that can happen during this week I have to have a Kidney Function Test. An X-ray of my chest and a Heart trace.
Then i can enter hospital on the 2nd of March and be greeted with a massive dose of Chemo to kill all my existing Stem Cells and the rest of my Cancer. I get transferred by Ambulance to the RVI at Newcastle on the 4th to receive my cells.
Transferred back to Sunderland the same day, and prepare for my 3week stay in hospital in solitary confinement. (Or is it a sterile room).
I am on my way back to good health!!! yippee
Then i can enter hospital on the 2nd of March and be greeted with a massive dose of Chemo to kill all my existing Stem Cells and the rest of my Cancer. I get transferred by Ambulance to the RVI at Newcastle on the 4th to receive my cells.
Transferred back to Sunderland the same day, and prepare for my 3week stay in hospital in solitary confinement. (Or is it a sterile room).
I am on my way back to good health!!! yippee
Friday 13 February 2009
In The Bag
Well at the begining of the week I thought this wasn't going to happen. but, on Wednesday and Thursday, we got enough cells for one transplant and one in the bank for the future.
So all I have to do now is wait, I see my spacialist on Tuesday I hope we will have some idea of dates for the future.
Feel relaxed now for a change.
So all I have to do now is wait, I see my spacialist on Tuesday I hope we will have some idea of dates for the future.
Feel relaxed now for a change.
Monday 9 February 2009
Feeling Flat
On Tuesday last week I was taught how to give myself an injection of Growth Hormone that I need to stimulate the growth of my Stem Cells before their harvest next Monday. What a horrible feeling when you have a needle held against your skin.
On Friday last week I attended my blood clinic as usual. Everything went well untill I was told that I was Neutrapenic. (very low or next to no immune system). I had two options available to me. 1. go staraight home and avoid crowded places, pubs, shops and any one who might have an infection. or 2. Don't go home and be admited to the sterile ward that i left on Saturday the week prior. There was no choice, I went home.
At my Stem cell Harvest today, I had my bloods taken again. This time I was told that my CD34 count (??) was low and they would not have the harvest at this point. I had to double the dose of my Growth Hormone Injections and return at 8.00am on Wednesday 11th. Only two days time but i cant help feeling flat, crap. let down......
On Friday last week I attended my blood clinic as usual. Everything went well untill I was told that I was Neutrapenic. (very low or next to no immune system). I had two options available to me. 1. go staraight home and avoid crowded places, pubs, shops and any one who might have an infection. or 2. Don't go home and be admited to the sterile ward that i left on Saturday the week prior. There was no choice, I went home.
At my Stem cell Harvest today, I had my bloods taken again. This time I was told that my CD34 count (??) was low and they would not have the harvest at this point. I had to double the dose of my Growth Hormone Injections and return at 8.00am on Wednesday 11th. Only two days time but i cant help feeling flat, crap. let down......
Sunday 1 February 2009
Been There and Done It!
I have been in Hospital for three days not four as I was expecting (there is always a bonus). It took ages on Thursday to start the treatment but at 4.00pm start it they did. Another line was inserted to my hand and a piggyback (two outlets) attached. as well as a piggyback attached to my Hickman line.
Now this is where it gets confusing. one of the bags had to go through in 22hours, one in 5hours, one in sixhours and one in 2hours. Each time the machine alarm went off i buzzed a nurse and they attached another bag.
Anyway on Saturday after being hooked up to this drip machine for 48hours the nurse remooved the last bag and the line in my hand. flushed my Hickman line and said he would return in about an hour. He didn't but a nice young nurse called Kelly did. she took blood from my Hickman and flushed it again and said when the results come back they would call the doctor.
Doctor arrives at 4,00pm saturday, asks if i feel dizzy or any feelings of being sick. I answer no to both questions. Good he said. How would you like to go home. Just need some anti-biotics from pharmacy then off you go. (good job home is on speed dial on my mobile).
Now this is where it gets confusing. one of the bags had to go through in 22hours, one in 5hours, one in sixhours and one in 2hours. Each time the machine alarm went off i buzzed a nurse and they attached another bag.
Anyway on Saturday after being hooked up to this drip machine for 48hours the nurse remooved the last bag and the line in my hand. flushed my Hickman line and said he would return in about an hour. He didn't but a nice young nurse called Kelly did. she took blood from my Hickman and flushed it again and said when the results come back they would call the doctor.
Doctor arrives at 4,00pm saturday, asks if i feel dizzy or any feelings of being sick. I answer no to both questions. Good he said. How would you like to go home. Just need some anti-biotics from pharmacy then off you go. (good job home is on speed dial on my mobile).
Friday 23 January 2009
Moving On
I thought that i was going into hospital on the 5th of February to start my treatment. Well the hospital rang me this morning. Asking if I would be prepared to start the treatment on the 29th January. One week earlier.
Wow, how things can move, so next Thursday I will be admitted to hospital for four days to undergo extensive high dose chemo........... Red cross parcels gratefully received.
Wow, how things can move, so next Thursday I will be admitted to hospital for four days to undergo extensive high dose chemo........... Red cross parcels gratefully received.
Saturday 17 January 2009
New Year, New Treatment
Not much has happened since I last posted. My CTD regime ended on the 19th December to enable my body to rest. On the 5th of January I agreed to let them insert a Hickman line into me, after having problems at hospital getting blood out of my veins.
In February I start the road toward Stem Cell Harvest, with a four day stay in Hospital from the 5th. The 10th sees me start a daily injection of growth hormone and the 16th I have the Stem Cells Harvested.
Another chapter in my treatment is starting, but I have to take encouragement from this because if the last regime hadn't worked then I wouldn't be this far forward. Onward and upward my nan used to say.
In February I start the road toward Stem Cell Harvest, with a four day stay in Hospital from the 5th. The 10th sees me start a daily injection of growth hormone and the 16th I have the Stem Cells Harvested.
Another chapter in my treatment is starting, but I have to take encouragement from this because if the last regime hadn't worked then I wouldn't be this far forward. Onward and upward my nan used to say.
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