This one is for my darling Evie
Tuesday, 21 September 2010
Athlete - Wires
This is a song which i think will best sum up how i feel during the transplant, as i will have wires coming out of my chest and i will be praying that there is some hope at the end of it all so i will try and play this in my videos as well
Joy Division - Atmosphere (Video)
This is one of the songs i picked out for my funeral i love joy division i know that sounds depressing 'joy division' and 'funeral' in same sentence lol.
Success!
I have recieved a email from Jo Taylor from radio Cambridge asking me to give the producer a ring in the morning. I will need to ring at 9.30 AM as this is the time they have asked that i ring, and i am hoping that they will ask for a interview on the show at some point in the near future.I am quite nervous now as i don't know what i will say but i am hoping that they will ask some questions and will take a look at the blog for some further info. This is at least a step in the right direction and it means alot that they have taken the time to contact me.
I am going to write to the Huddersfield Examiner as well as i am hoping that they will see that i am trying to achieveve the same aims as Adrian Sudbury and carry on the campaigning that he started. I recommend reading his blog as that is what inspired me to write mine. The link is baldyblog.freshblogs.co.uk please check it out.
I am going to write to the Huddersfield Examiner as well as i am hoping that they will see that i am trying to achieveve the same aims as Adrian Sudbury and carry on the campaigning that he started. I recommend reading his blog as that is what inspired me to write mine. The link is baldyblog.freshblogs.co.uk please check it out.
Monday, 20 September 2010
No Joy yet at getting on the radio!
Well i have contacted a few different people with my story but not heard a thing back yet. I did think when i spoke to Cambridge radio the other week that they were interested but not even had a email back to say that they are considering a chat with me which is a shame cos i do want to fulfill my aim and dream of making an impact on people's lifes and getting more BONE MARROW DONORS. I want to hear back from a radio station or a newspaper before i go into hospital cos i think that then i will feel like i am not making a prat out of myself when i make videos of myself cos i am dreading talking and how i look being caught on film . However i am going to film it because i really do hope that people on here will actually find it interesting and useful and i know that it will help me to not shut myself off from the world and sit in my bed feeling sorry for myself everyday. I will have a reason to get out of my hospital bed and do something productive. i have already reached my target of 1,000 blog views already and i haven't had the BMT yet, so that is really amazing and i thank everyone who has taken a minute to read this blog. I want to make people proud of me not sorry for me as this is not a 'i've got cancer please feel sorry me' blog it is a blog to tell my story and as i have already said to do something productive whilst i am isolated from the world (you can feel sad for me if you want though lol as i do at times as well, i just dont want people feeling too depressed when they read my blog that is all hah).
Friday, 17 September 2010
Left hospital in good spirits today
Had a routine appointment with my consultant Dr Smith at Leeds this morning, had bloods taken when i arrived (i bled a good 5 mins after as well) then i think i waited about half an hour as the appointments always run over in to the next persons appointment. My white count was 8, platelets 215 and hb was 13.8. Dr Smith was pleased with my counts as they are steady and haven't increased or decreased too much since last time. I am not in clinic now until the 4th and 6th of October which will be after my nice relaxing holiday.
I informed Dr Smith that Mr and Mrs coldsore are back on my mouth as that is all i had to report this week lol. I asked if he could tell me my liver function result as i wanted to take it with me to my driving course tomorrow to see if it has improved since i stopped drinking. However, the reading for September is abnormal but last months is normal, so he is going to find out whether it is a new drug i am on that is causing the abnormal reading. I think it could be the antibiotics i was taking last week but it isn't anything major so not worried about it, there will be a perfectly logical explanation next time i see him i am sure.
I definately feel a bit more at ease after today as Dr Smith is really good at reassuring me and answering any questions,so it will be a shame that i wont be under his care anymore after the transplant, but i am sure the transplant team will do just as good a job. Just hope they can put up with me lol. I also got chatting with a couple of guys in the waiting room who have had a BMT and they are both doing really well and just have weekly appointments at the moment. I think that they had Acute Myeloid leukaemia and were around late 40's so i hope that i have a good response too especially with me being younger. I think that talking to other patients definately helps answer some of the little worries that you may have. I asked whether they stuck to everything in the transplant booklet and they said to only use it as a guide not to do everything single thing wor for word, so i don't need to worry about my clothes being washed at 60 degrees and then ironed and other little things like that.
I am just going to crash out on the sofa now as i suffer with fatigue and as i got up at 7 today (which is a rarity for me) my body is ready to sleep again now. I need to stay awake for embarassing bodies later on tonight though as it is a very addictive programme. Oh and up at 6AM tomorrow so not looking forward to that (nor is Tom) as i am a rite moody margaret on a morning!
I informed Dr Smith that Mr and Mrs coldsore are back on my mouth as that is all i had to report this week lol. I asked if he could tell me my liver function result as i wanted to take it with me to my driving course tomorrow to see if it has improved since i stopped drinking. However, the reading for September is abnormal but last months is normal, so he is going to find out whether it is a new drug i am on that is causing the abnormal reading. I think it could be the antibiotics i was taking last week but it isn't anything major so not worried about it, there will be a perfectly logical explanation next time i see him i am sure.
I definately feel a bit more at ease after today as Dr Smith is really good at reassuring me and answering any questions,so it will be a shame that i wont be under his care anymore after the transplant, but i am sure the transplant team will do just as good a job. Just hope they can put up with me lol. I also got chatting with a couple of guys in the waiting room who have had a BMT and they are both doing really well and just have weekly appointments at the moment. I think that they had Acute Myeloid leukaemia and were around late 40's so i hope that i have a good response too especially with me being younger. I think that talking to other patients definately helps answer some of the little worries that you may have. I asked whether they stuck to everything in the transplant booklet and they said to only use it as a guide not to do everything single thing wor for word, so i don't need to worry about my clothes being washed at 60 degrees and then ironed and other little things like that.
I am just going to crash out on the sofa now as i suffer with fatigue and as i got up at 7 today (which is a rarity for me) my body is ready to sleep again now. I need to stay awake for embarassing bodies later on tonight though as it is a very addictive programme. Oh and up at 6AM tomorrow so not looking forward to that (nor is Tom) as i am a rite moody margaret on a morning!
Thursday, 16 September 2010
Wednesday, 15 September 2010
some useful links that will provide more info on how to become a donor and to research CML hope you find these useful i know i did!
http://www.cancerhelp.org.uk/
for more info on CML and other cancers.
http://www.cmlyorkshire.webs.com/
this is the site that i am a member of for my cml support group so you can go on here for info on other cml members and dates of future cml support groups held at Leeds, so if there is anyone on here with cml or know somone with cml i hope you find this of use.
http://www.leukaemia-research.org.uk/
for more info on the different types of leukaemia including CML.
http://www.anthonynolan.org.uk/
to find out more about becoming a bone marrow donor, i found this was the best site but there is also another site below to click on aswell.
www.blood.co.uk/pages/marrow_info.html
to find out about becoming a donor and i did get the age wrong earlier it is between 18 and 49 if want to on the bone marrow donor.
I hope that some of these sites are useful for further info.
for more info on CML and other cancers.
http://www.cmlyorkshire.webs.com/
this is the site that i am a member of for my cml support group so you can go on here for info on other cml members and dates of future cml support groups held at Leeds, so if there is anyone on here with cml or know somone with cml i hope you find this of use.
http://www.leukaemia-research.org.uk/
for more info on the different types of leukaemia including CML.
http://www.anthonynolan.org.uk/
to find out more about becoming a bone marrow donor, i found this was the best site but there is also another site below to click on aswell.
www.blood.co.uk/pages/marrow_info.html
to find out about becoming a donor and i did get the age wrong earlier it is between 18 and 49 if want to on the bone marrow donor.
I hope that some of these sites are useful for further info.
CML continued...
Symptoms continued
I have talked about the symptoms in the chronic phase of the disease, there are 3 phases of chronic myeloid leukaemia which if left untreated you will die! The accelerated phase is the next stage of the disease and there are no more side effects than the chronic stage. The final stage of the disease is called the 'blast phase' and the side effects are likely to be worst and more noticable that the disease is progessing now. Symptoms include:
How it is diagnosed?
CML is usually diagnosed after a blood test comes back as abnormal and you are then referred to a haemotologist who specialises in blood problems. The blood test will show a high number of immature white cells prompting the haemotologist to ask to see you asap.
You will give a full medical history and then have a physical examination when you attend your appointment. I was diagnosed over the telephone so i was not seen until the next day, most people are already at the hospital when they are told though. You then have another blood test done to show how many leukaemia cells are present and your doctor will then want to do a bone marrow sample to confirm the diagnosis so that treatment can be planned.
Bone marrow biopsy
I am hoping to film my bone marrow biopsy on the 4th of October as long the nurses allow it and i can have it done with sedation if i like. If i am allowed to film it then i may choose not to be sedated as i will have a reason to be brave if i am having it filmed. I had a bone marrow sample taken 2 days after i was diagnosed and i have gotta be honest and say 'yeah it did hurt a bit' but that was when the local anaesthetic was injected in to my hip bone, it doesn't hurt after that just feels very strange. However, if you are wanting to go on the bone marrow register you will not have this procedure done, you will just give blood to determine whether you would be suitable to go on the register (enough blood cells in your blood etc) and you need to be under 40 to go on the register aswell but i will double check this. Right the doctor will take a sample of bone marrow and look at under a microscope to work out which treatment to give you and which stage of the disease you are in, this can take about a week.
I think it was about 4 weeks before i was put on a drug called glivec which is first line treatment for people in the chronic phase and the aim of this treatment is to control the condition for several years and to give you a good quality of life.
Glivec is a tablet which you take daily for rest of your life if you respond to it. Glivec works by blocking signals within the leukaemia cells that make them abnormal. Blocking signals kills the cells.
Side effects:
Interferon alpha
This is a protein normally produced by the body during viral infections (flu). It is another treatment available during the 'chronic' stage. I think that it was a first choice of treatment before glivec. Interferon is given by a small injection under the skin. I was on this treatement for a few months this year and it is hard getting used to injecting yourself, i think it is bad enough someone else doing it but when it's your self i think it is even harder. I did not get on with this drug either as i spent most of my time in bed as i felt like i constantly had the flu.
Side effects:
Chemotherapy tablets
Hydroxycarbamide is the most common tablet used and this is the only treatment that has got my blood counts normal but it doesn't do anything for the actual cancer which is a shame because it is brilliant for reducing white blood cells very quickly, and the only side effect i have had from it is putting on nearly 3 stone but i hope to lose it all again once i have the transplant.
Dasatanib and Nilotinib
These are the alternatives available if you do not respond to glivec. I have being on both of these drugs and had no joy as it turned out i had the rare bone marrow mutation which means you will not respond to all 3 'wonder drugs' as they are sometimes called. I found that the dasatanib caused a horrific rash and swelling so i lasted probably a month on it and the nilotinib i didn't really have any side effects on. Dasatanib is again a tablet and you take it twice a day and it blocks out the dodgy cells like glivec does, they do not know how long this drug will have an efffect for as it hasn't been out long enough to know, but it should have a long lasting effect like glivec.
side effects of dasatanib:
The side effects:
A few statistics
Glivec- 9 out of 10 people will live 7 years and some scientists have estimated that most people will live for at least 19 years on glivec.
These are just rough facts they may be proved wrong and average survival time is different for every patient as every individual is unique.
Most people who have high dose therapy for a bone marrow transplant will live for 15 years, if that is true i may only live til im 35(i hope this wont be the case before you think i am being morbid but i do have to prepare myself for the worst and that means i could die during or after the transplant i have to deal with that cos if i didn't then i would be very naive).
I think the hardest thing for me at the moment is that i keep having dreams about my own funeral, mind you last night i dreamt Liz Mcdonald off corrie was my mother so i don't which is scarier lol. I am going to have to plan my funeral cos i aint having my family picking my songs and singing a load of hyms i have probably never heard of lol. I know that i would have Joy Division-atmosphere as a definate song and then possibly The Smiths (i sound really depressing now) i did have another song i had picked and it has slipped my mind completely. I wont mention owt else to do with this right now cos it will be hard for my family to read but i am sure they will understand why i have mentioned it as every 30 out of 100 people who have the transplant will die and that is a lot of people (not numbers) to me.
I have talked about the symptoms in the chronic phase of the disease, there are 3 phases of chronic myeloid leukaemia which if left untreated you will die! The accelerated phase is the next stage of the disease and there are no more side effects than the chronic stage. The final stage of the disease is called the 'blast phase' and the side effects are likely to be worst and more noticable that the disease is progessing now. Symptoms include:
- Lots of infections close together
- Anaemia
- Unusual bleeding such as nose bleeds and heavy periods in women
- swollen lymph nodes
- itching (any part of the body)
How it is diagnosed?
CML is usually diagnosed after a blood test comes back as abnormal and you are then referred to a haemotologist who specialises in blood problems. The blood test will show a high number of immature white cells prompting the haemotologist to ask to see you asap.
You will give a full medical history and then have a physical examination when you attend your appointment. I was diagnosed over the telephone so i was not seen until the next day, most people are already at the hospital when they are told though. You then have another blood test done to show how many leukaemia cells are present and your doctor will then want to do a bone marrow sample to confirm the diagnosis so that treatment can be planned.
Bone marrow biopsy
I am hoping to film my bone marrow biopsy on the 4th of October as long the nurses allow it and i can have it done with sedation if i like. If i am allowed to film it then i may choose not to be sedated as i will have a reason to be brave if i am having it filmed. I had a bone marrow sample taken 2 days after i was diagnosed and i have gotta be honest and say 'yeah it did hurt a bit' but that was when the local anaesthetic was injected in to my hip bone, it doesn't hurt after that just feels very strange. However, if you are wanting to go on the bone marrow register you will not have this procedure done, you will just give blood to determine whether you would be suitable to go on the register (enough blood cells in your blood etc) and you need to be under 40 to go on the register aswell but i will double check this. Right the doctor will take a sample of bone marrow and look at under a microscope to work out which treatment to give you and which stage of the disease you are in, this can take about a week.
I think it was about 4 weeks before i was put on a drug called glivec which is first line treatment for people in the chronic phase and the aim of this treatment is to control the condition for several years and to give you a good quality of life.
Glivec is a tablet which you take daily for rest of your life if you respond to it. Glivec works by blocking signals within the leukaemia cells that make them abnormal. Blocking signals kills the cells.
Side effects:
- nausea
- vomiting
- swelling of face
- diarrhoea
- leg cramps
- itchy rash
- loss of appetite
Interferon alpha
This is a protein normally produced by the body during viral infections (flu). It is another treatment available during the 'chronic' stage. I think that it was a first choice of treatment before glivec. Interferon is given by a small injection under the skin. I was on this treatement for a few months this year and it is hard getting used to injecting yourself, i think it is bad enough someone else doing it but when it's your self i think it is even harder. I did not get on with this drug either as i spent most of my time in bed as i felt like i constantly had the flu.
Side effects:
- chills
- fever
- headaches
- back ache
- tiredness
Chemotherapy tablets
Hydroxycarbamide is the most common tablet used and this is the only treatment that has got my blood counts normal but it doesn't do anything for the actual cancer which is a shame because it is brilliant for reducing white blood cells very quickly, and the only side effect i have had from it is putting on nearly 3 stone but i hope to lose it all again once i have the transplant.
Dasatanib and Nilotinib
These are the alternatives available if you do not respond to glivec. I have being on both of these drugs and had no joy as it turned out i had the rare bone marrow mutation which means you will not respond to all 3 'wonder drugs' as they are sometimes called. I found that the dasatanib caused a horrific rash and swelling so i lasted probably a month on it and the nilotinib i didn't really have any side effects on. Dasatanib is again a tablet and you take it twice a day and it blocks out the dodgy cells like glivec does, they do not know how long this drug will have an efffect for as it hasn't been out long enough to know, but it should have a long lasting effect like glivec.
side effects of dasatanib:
- diarrhoea
- tierdness
- fluid on the lungs (so they usually do chest x-rays whilst on the drug)
- headaches
- rashes
- swelling
- bone pain
- fertility may be affected but not sure how long for
The side effects:
- nausea
- diarrhoea
- skin changes
- constipation
- tiredness
A few statistics
Glivec- 9 out of 10 people will live 7 years and some scientists have estimated that most people will live for at least 19 years on glivec.
These are just rough facts they may be proved wrong and average survival time is different for every patient as every individual is unique.
Most people who have high dose therapy for a bone marrow transplant will live for 15 years, if that is true i may only live til im 35(i hope this wont be the case before you think i am being morbid but i do have to prepare myself for the worst and that means i could die during or after the transplant i have to deal with that cos if i didn't then i would be very naive).
I think the hardest thing for me at the moment is that i keep having dreams about my own funeral, mind you last night i dreamt Liz Mcdonald off corrie was my mother so i don't which is scarier lol. I am going to have to plan my funeral cos i aint having my family picking my songs and singing a load of hyms i have probably never heard of lol. I know that i would have Joy Division-atmosphere as a definate song and then possibly The Smiths (i sound really depressing now) i did have another song i had picked and it has slipped my mind completely. I wont mention owt else to do with this right now cos it will be hard for my family to read but i am sure they will understand why i have mentioned it as every 30 out of 100 people who have the transplant will die and that is a lot of people (not numbers) to me.
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