I had a call from Paul at Anthony Nolan HQ this morning and found out that the patient has had another course of treatment, and hopefully should be fit to donate sometime next month.
Obviously because it was so recent I thankfully wont have to go through everything with the medical again, but I will have to give some more blood just to make sure I haven't caught anything nasty in the last month (which - I can only hope - I haven't).
I am starting to feel a little like a pin cushion, haha! but all worth it in the end :)
I'm absolutely over the moon, I was so worried about the patient, glad to hear they're doing okay and hopefully we'll be able to get them fit as a fiddle in the next few months!
I don't have any definite dates yet, but I'll update you all when I do!
Looks like another trip to London for me... Northerners are not built for the tube!
R xo
Friday 22 June 2012
Tuesday 29 May 2012
it's not the end. 29/05/12
I've had some devastating news this morning, although my medical was perfectly fine, the patient that would have been receiving my stem cells has relapsed.
This basically means that the leukaemia/lymphoma has returned, and they will have to receive another course of treatment before they can even consider a stem cell transplant again.
I guess we just weren't quick enough.
I'm still on reserve for the patient for if and when they are well enough to receive a stem cell transplant, but obviously we have no idea when that will be or even if it will happen for them now.
I don't really have much to say today, I'll write a 'proper' post once I've calmed down a bit.
Thank you to everyone who has given me their support through this process, it just reiterates how important it is that we attack this issue head on.
please keep them in your thoughts. hopefully we'll still be able to help.
R xo
This basically means that the leukaemia/lymphoma has returned, and they will have to receive another course of treatment before they can even consider a stem cell transplant again.
I guess we just weren't quick enough.
I'm still on reserve for the patient for if and when they are well enough to receive a stem cell transplant, but obviously we have no idea when that will be or even if it will happen for them now.
I don't really have much to say today, I'll write a 'proper' post once I've calmed down a bit.
Thank you to everyone who has given me their support through this process, it just reiterates how important it is that we attack this issue head on.
please keep them in your thoughts. hopefully we'll still be able to help.
R xo
Monday 28 May 2012
No news is good news 28/05/12
It has now been just under a week since my medical, and the blood test results should have been available in, at the most, 5 days from testing. This means that, hopefully, there are no problems and we can do ahead with the donation :)
The thing that is striking me most about this whole process is how easy it's all been to be honest. I knew what I was getting into from the beginning, but I honestly didn't realise how quickly and smoothly everything could run!
I've been doing a lot of digging on the internet and I realised there's barely any information out there really, a lot of people are convinced that they'll be put under general anaesthetic and be in a lot of pain and that is just not the reality at all. Also I don't know how aware people are, but there are 2 different major bone marrow registers here in the UK, the Anthony Nolan register and the NHS register. The NHS register is nowhere near as extensive as the AN one and does not link with registers all over the world in the same way that Anthony Nolan does, giving you a much wider reach and a much higher chance of finding a tissue match. that's 11 million donors, worldwide.
It's mind boggling really when you think about the size of the operation... and it's only getting bigger!
http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx
do something awesome. it'll make you feel good, and it doesn't hurt... at least nothing I've had thus far has.
Promise.
R xo
The thing that is striking me most about this whole process is how easy it's all been to be honest. I knew what I was getting into from the beginning, but I honestly didn't realise how quickly and smoothly everything could run!
I've been doing a lot of digging on the internet and I realised there's barely any information out there really, a lot of people are convinced that they'll be put under general anaesthetic and be in a lot of pain and that is just not the reality at all. Also I don't know how aware people are, but there are 2 different major bone marrow registers here in the UK, the Anthony Nolan register and the NHS register. The NHS register is nowhere near as extensive as the AN one and does not link with registers all over the world in the same way that Anthony Nolan does, giving you a much wider reach and a much higher chance of finding a tissue match. that's 11 million donors, worldwide.
It's mind boggling really when you think about the size of the operation... and it's only getting bigger!
http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx
do something awesome. it'll make you feel good, and it doesn't hurt... at least nothing I've had thus far has.
Promise.
R xo
Wednesday 23 May 2012
'i'm sorry babe but we need more blood' 23/5/12
Yesterday was my medical, I'm back in Liverpool now and I'm honestly exhausted.
This photo should give you a laugh though - not least when you realise that I've got my gown on back to front and i was wearing it like a dressing gown like a divvy!!
SO. 2pm was my appointment, so after as much breakfast as i could muster (I knew I'd be having my bloods done again and I am NOT good with needles) I went to sit outside in the sun and wait for my cab.
At this point I should give big love to Paul at Anthony Nolan - I'd been in London overnight with work anyway and I was staying at County Hall, and had to get all the way down to the Royal free with all my stuff. So, they got me a cab, took me to their head office where they kept all of my things safe for me, and Paul kindly walked me to the hospital and look me right to my consultant. Honestly he was lovely and sorted my train home and a cab back to Euston out for me, and will be sorting my hotel and trains for me and my mama to come back to London in 2 weeks... but more on that later.
So yeah, I went in to meet my consultant (who clearly did not understand my northern humour, he was very unamused with the whole situation) who was lovely nonetheless. he asked me a LOT of questions (which you've already answered about a million times on all these medical forms... but it is obviously very important).
Then we got started with the medical. He took my height and weight (public weighing!!! but I have lost weight since the week before so yay me!) and then lay me down to check my stomach (not sure why to be honest, think its lymph nodes or something), my lower stomach - just under my hip bones, the glands in my neck, and my nodes under my arms (it was hot outside, thank the lord for nivea 48hr deo). He then checked my blood pressure, my heartbeat in the front and then from the back, and declared me fit as a fiddle.
there is a LOT of paperwork. lots and lots and lots.
SO. 2pm was my appointment, so after as much breakfast as i could muster (I knew I'd be having my bloods done again and I am NOT good with needles) I went to sit outside in the sun and wait for my cab.
At this point I should give big love to Paul at Anthony Nolan - I'd been in London overnight with work anyway and I was staying at County Hall, and had to get all the way down to the Royal free with all my stuff. So, they got me a cab, took me to their head office where they kept all of my things safe for me, and Paul kindly walked me to the hospital and look me right to my consultant. Honestly he was lovely and sorted my train home and a cab back to Euston out for me, and will be sorting my hotel and trains for me and my mama to come back to London in 2 weeks... but more on that later.
So yeah, I went in to meet my consultant (who clearly did not understand my northern humour, he was very unamused with the whole situation) who was lovely nonetheless. he asked me a LOT of questions (which you've already answered about a million times on all these medical forms... but it is obviously very important).
Then we got started with the medical. He took my height and weight (public weighing!!! but I have lost weight since the week before so yay me!) and then lay me down to check my stomach (not sure why to be honest, think its lymph nodes or something), my lower stomach - just under my hip bones, the glands in my neck, and my nodes under my arms (it was hot outside, thank the lord for nivea 48hr deo). He then checked my blood pressure, my heartbeat in the front and then from the back, and declared me fit as a fiddle.
there is a LOT of paperwork. lots and lots and lots.
- Information for registry Peripheral Blood Stem Cell Donors
- Medical questionnaire (AGAIN)
- Information on consent
- consent form to take extra blood for a study
- information on PBSC
- consent form for PBSC
- information on a central line (EEK)
- consent form for central line (which i was NOT happy with but I'm assured that i wont need because I have fabulous veins... still I'm terrified)
- consent form for G-CSF
- insurance documents
- and finally a NHS consent form for basically all of the above
now I'm not going to explain what a central line is because I'm hoping i wont need one and the thought scares me, and if i start researching it on the Internet I'll end up winding myself up. if you're interested, google it!
I will be donating, as you may have gathered, by PBSC, which is the 'glorified tumble dryer' that my consultant was talking about. it means that i will be visited my a nurse on 8th, 9th and 10th June at home or work by a nurse who will give me an injection of G-CSF (Granulocyte Colony Stimulating Factor for those medically brained) which will basically send my immune system into overdrive, producing loads and loads of these 'B' cells that I mentioned earlier, and releasing them into my bloodstream. Apparently this will make me feel fevery, achey and give me "boney pains" whatever they are. sounds delightful.
Then on the 11th June, me and mama J will travel down to London. I will have my 4th injection of G-CSF at the Royal free, go back to the hotel and attempt to sleep (ha, wont happen!)
On 12th, I'll go to the hospital at 9am and have a blood test. Hopefully then the count of 'B' cells in my bloodstream will be super high and they can put me on the magic machine that will separate the cells from my blood., and then put my blood back into my body.
anyway, following that I had to get my bloods done. fourteen tubes of blood they took, FOURTEEN. six were for research, i think. this is so my blood can be tested for HIV, Hepatitis, etc etc. I then had to give a urine sample so that I could be tested for pregnancy (they do not know how G-CSF can affect an unborn child so they MUST check for pregnancy first).
Then i heard those dreaded words from Sam, my lovely nurse. "I'm sorry babe but we need more blood". why? because there must be a sample taken for tissue typing at a DIFFERENT time from the other samples.
GRR. i hate needles. so that's sixteen tubes. I'll have none left at this rate.
So then it was time for my ECG. I met the lovely Deborah at this point, my consultants PA, and my chaperone. Deborah was fabulous, really lovely, and really took care of me, taking me to my ECG and waiting for me while i went in. ECGs are nothing, you literally get your top half undressed and have the sticky things on you like that scene in E.T. (that always makes me cry as well, but never mind that), and get hooked up to the machine. 2 minutes and you're done.
Then I was reunited with the lovely Deborah who took me down to my X-Ray. Now, I probably shouldn't say this, but Deborah cheekily got me bumped up the x-ray queue so I only waited 10 minutes instead of over an hour. This is where I had to get undressed and put my ridiculous gown on (back to front, typical me) and basically push my boobs up against a wall and stand in a ridiculous position because I was too small and my arms were in the way. But 5 minutes and I was done, so there we go!
Lastly Deborah took me up to meet Violet, who works on the ward that I'll be donating in. Violet was brilliant and told me all about what would happen, checked my veins again "you really do have lovely veins!" (getting sick of hearing this!!!!) and gave me a further opportunity to ask any questions. following this, I was done, Deborah took me to the main entrance and I walked the 5 minute walk back to Paul's office, picked up my bag and jumped in a cab back to Euston.
so that's that!
I'll know in 5 days if my bloods are okay, and if they are I'll be getting all of my arrangements for injections and whatnot in the next few days. I'm nervous but my mind has really been put at ease by everyone there, it really has. and I'll have my mama with me, so everything will be ok :) hopefully we'll save a life!
R xo
You're a match. oh my god 19/5/12
yep. i'm a perfect match for this person, whoever they are, and wherever they are.
If I'd bothered to check my email on Friday 18th I'd have known a day earlier but I'd had my car theory test that day and an early dart from work so I didn't (like an idiot).
I was at the studio with the girls, having a beer and a general chit chat when I found out. My phone buzzed, it was a text from my dad saying "there's a big-looking letter here from Anthony Nolan". Well that was it, I had to call him and get him to open it right away - the suspense would have killed me!
"Dear Rachel
If I'd bothered to check my email on Friday 18th I'd have known a day earlier but I'd had my car theory test that day and an early dart from work so I didn't (like an idiot).
I was at the studio with the girls, having a beer and a general chit chat when I found out. My phone buzzed, it was a text from my dad saying "there's a big-looking letter here from Anthony Nolan". Well that was it, I had to call him and get him to open it right away - the suspense would have killed me!
"Dear Rachel
Thank you for providing your last blood sample. The testing phase is now complete and we are pleased to inform you that you are compatible with the patient in need of a stem cell transplant and have been requested to donate.
The Transplant Centre responsible for the patient’s care has indicated they have a preference for a peripheral blood stem cell collection (PBSC), and they would like this to occur on the 12 & 13 June. However, the choice of donation method is ultimately yours.
We would like you to carefully consider if you wish to proceed on the understanding that this is an entirely voluntary decision. Please read the ‘You Are A Match, Save A Life’ booklet enclosed and discuss the matter with your family, friends and employer.
You will need to attend a medical examination ideally on one day during the week beginning 21 May in one of our London hospitals, in order to ensure that you are medically fit to donate. All arrangements and expenses related to the medical and donation will be covered by us and we are happy to cover the transport costs of a companion should you wish to bring someone with you.
As you have been requested for a donation in the near future, please refrain from donating blood or platelets until the donation has occurred.
Please contact us on 0303 303 0303 as soon as possible between the hours of 9am and 5pm to discuss the situation and to make the necessary arrangements. If you decide you do not wish to proceed to donation, it is extremely important that you inform us urgently so the Transplant Centre can decide on the best course of treatment for their patient."
so there we have it. This meant that I found out on the Saturday, and by the time I got in touch with them it was Monday... and I had to have the medical on Tuesday.
Terrifying. London is a big place. Notherners like me are not built for the stresses of the tube!
It's all for a good cause though so I guess i'll just have to man up.
This was another time when I got all emotional and overwhelmed with the severity of the situation (I know, I'm a crybaby, right?). Luckily my boyfriend was there and I allowed myself a moment of weakness to have a cry. He told me that he was made up for me and I should be proud of what I'm doing, but it really doesn't feel that way to me. So many people have said exactly that, that it's an amazing thing, but to me it's just that someone has to do it, and if it's not me then someone else would have to, and if you dont just step up and do it, that person may not have ever found a match, who knows.
I don't think it's particularly brave or whatever else. I'm terrified, it's hardly brave, it's not even a big deal I'm just a wuss! I just wish more people would take the initiative and just go for it.
R xo
well that's about as clear as mud. 14/5/12
Today I received a letter from Anthony Nolan which literally tells me nothing.
"Dear Rachel
We are pleased to inform you that you still appear to be a fairly good match for the patient... you may be asked to provide a further blood sample OR to donate... if you haven't heard from us within 3 months it is highly unlikely that you will be required to donate..."
how useful!
to be honest I dont know what to think, there are a lot of questions that I have... how likely is it that'll be called to donate? are there more people who are a better match than me, are you waiting on them? more importantly... is this person okay?
I don't know what to think. This letter gives me no answers.
R xo
"Dear Rachel
We are pleased to inform you that you still appear to be a fairly good match for the patient... you may be asked to provide a further blood sample OR to donate... if you haven't heard from us within 3 months it is highly unlikely that you will be required to donate..."
how useful!
to be honest I dont know what to think, there are a lot of questions that I have... how likely is it that'll be called to donate? are there more people who are a better match than me, are you waiting on them? more importantly... is this person okay?
I don't know what to think. This letter gives me no answers.
R xo
'you have lovely veins'... brilliant 23/4/12
I was TERRIFIED for my blood test, I'm got going to lie. I've never had one before and I was definitely not looking forward to it. I was convinced it was going to be horrible and I got myself all wound up over it and in the end I had to just go in to the Walk-In centre first thing and basically say "just take it before I chicken out".
It wasn't so bad, to be honest it just feels like a little scratch.
I'm so sorry I forgot to take a photo before my bloods!! so I know this is a little disgusting. But basically, this is what you get in your "pack". an information booklet, a new medical form so that they are aware of any changes to your health since you filled in the first one, and tubes. you also get a needle (because the sample bottles can be a different size to the ones in your GP and the vacuum may not work) and some instructions to the nurse/GP/whoever is taking your bloods.
to be honest it was very bizzare, taking my blood to the post office!!! but it's in a jiffy bag so no one knows what it is. I posted it off (the bag is pre-paid) and that was that for another day!
My arm was a little sore the following day from the bloods but that was about it really. apparently I have "lovely veins" so that can only be a plus in case I'm doing PBSC.
I found out at this point that this was a pretty urgent case so it was very important for me to get my bloods off as soon as I possibly could, and obviously they had to be sent the same day anyway so they didn't clot or whatever else. It all seemed to be pretty urgent, so I'm now wondering about the patient. I wonder what they have, how long they've known, how old they are, where they're from. Maybe I'll find out some day :) or maybe they'll have no interest in finding out about me, who knows. I'm just praying that these bloods are a match.
R xo
It wasn't so bad, to be honest it just feels like a little scratch.
I'm so sorry I forgot to take a photo before my bloods!! so I know this is a little disgusting. But basically, this is what you get in your "pack". an information booklet, a new medical form so that they are aware of any changes to your health since you filled in the first one, and tubes. you also get a needle (because the sample bottles can be a different size to the ones in your GP and the vacuum may not work) and some instructions to the nurse/GP/whoever is taking your bloods.to be honest it was very bizzare, taking my blood to the post office!!! but it's in a jiffy bag so no one knows what it is. I posted it off (the bag is pre-paid) and that was that for another day!
My arm was a little sore the following day from the bloods but that was about it really. apparently I have "lovely veins" so that can only be a plus in case I'm doing PBSC.
I found out at this point that this was a pretty urgent case so it was very important for me to get my bloods off as soon as I possibly could, and obviously they had to be sent the same day anyway so they didn't clot or whatever else. It all seemed to be pretty urgent, so I'm now wondering about the patient. I wonder what they have, how long they've known, how old they are, where they're from. Maybe I'll find out some day :) or maybe they'll have no interest in finding out about me, who knows. I'm just praying that these bloods are a match.
R xo
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