So i kinda thought maybe i should blog…
Today i had a really great day on the tct unit, jimmy teens came in who r like a you tube for cancer patients to kinda share there stories and it was really great made some animations n got chatting about the norm, but its completely knackered me out, im currently in Cardiff arrived on tue eve its now wed eve and im going home tomorrow. I have a hospital appointment tomorrow where hopefully i might get my ebv virus check back- im sure its gonna be absolutely fine but there is that small part of me that thinks what if it isnt, i know the treatment if it isnt and im fine with it but i so just want to be normal again its untrue. Even though i know that normality as it was will never return because i am who i am today because of what ive been through. Being in Cardiff is kinda hard going cuz i love the ppl i live with so much but i feel so different from them sometimes and i’d love just to be like them.
Monday, July 04, 2011
spending time with the good old tct
Spending and the good old tct.
Well I’ve kinda gone a little spending crazy over the past few days- just found out well kinda found out I am getting my Esa benefit now… Although am slightly worried I’ve spent some of it as I’ve not had a letter through about it yet…. So fingers crossed it is all mine- it was my national insurance on it- and I had reapplied, as originally they said I wasn’t in titled to it as I was still a student- point I’ve had to defer for the WHOLE year and am not aloud to work was beyond them, but thankfully the law has changed slightly now and because I get disability benefit I could claim ESA… Anyway back to my spending spree I’m currently on a brand new iPad, but I didn’t go into the apple store for that… I decided that I’d get a mac book pro- my old mac was beginning to break and with all my birthday money and child bonds I didn’t have to put that much towards it but I was going to wait till the new year just so I was sure I would have enough money to live and get Christmas presents as well but with the extra benefits being back paid from the 2nd Aug it ment I had quite a nice sum there so I decided to splash out and get both as well as a new photo editing programme called aperture 3. At least by getting it now I have something to keep me entertained while I can’t do uni, and something to show for my 21st.
On Saturday I got to spend the day with the lovely tct (teenage cancer trust) group which I loved so so much, it’s great to have made so many new friends that know what it’s like to be ill. We got to go to a company called M and M direct…. Where we were each given £100 worth of free clothes which we had pre ordered a few weeks before. We got shown around the factory and learnt how the factory worked and then got taken bowling and for food in Hereford, I has such a great time- although was so so tired afterwards I’ve been in a grump today and I hurt so much from it. Though not as much as I did the week before when we went bowling with Clic Sargent and tct in Cardiff (where the bowling balls were heavier). On Tuesday coming I may be meeting Cardiff City football club in the tct unit with all the gang from there- and I’m very pleased that for once I did have a slightly later clinic appointment as I should be able to see them now!
Being ill has at least come with a few perks like getting to do so much with others in a similar situation and realising your not the only one- but also how lucky you are, unfortunately not everyone is as lucky as I have been and I will never forget Kieran or Johnathon and will always be grateful for the support they and their families gave to me. Being out with the tct gang also made me realise how quickly I was treated as some of the group have been ill for some time- but then they r still aloud to attend school or college or there recovery time is much shorter…. It’s weird how we can all see positives and negatives in each others treatments- if only we didn’t just have to have a 24hour mot and then be fixed- life would be perfect for all of us.
In saying this however I wouldn’t change a thing…. And i know how that sounds to anyone normal- she is glad she got ill? Well I am, simply because I wouldn’t be who I am without it, I wouldn’t have met such amazingly strong friends- who I seem to have got close to so much faster than any other friendship, who will always like or comment on your status to show you they are there, and are online at 3am because just like you they cant sleep… I wouldn’t have learnt what a bone marrow was or what it did, or any of the other weird medical jargon that I now know, and I would have never met the incredible nursing staff that I have, many of whom have no idea what it’s like but will always listen, smile and care. To these people I will always be grateful because they are what have made me… Well me.
Well I’ve kinda gone a little spending crazy over the past few days- just found out well kinda found out I am getting my Esa benefit now… Although am slightly worried I’ve spent some of it as I’ve not had a letter through about it yet…. So fingers crossed it is all mine- it was my national insurance on it- and I had reapplied, as originally they said I wasn’t in titled to it as I was still a student- point I’ve had to defer for the WHOLE year and am not aloud to work was beyond them, but thankfully the law has changed slightly now and because I get disability benefit I could claim ESA… Anyway back to my spending spree I’m currently on a brand new iPad, but I didn’t go into the apple store for that… I decided that I’d get a mac book pro- my old mac was beginning to break and with all my birthday money and child bonds I didn’t have to put that much towards it but I was going to wait till the new year just so I was sure I would have enough money to live and get Christmas presents as well but with the extra benefits being back paid from the 2nd Aug it ment I had quite a nice sum there so I decided to splash out and get both as well as a new photo editing programme called aperture 3. At least by getting it now I have something to keep me entertained while I can’t do uni, and something to show for my 21st.
On Saturday I got to spend the day with the lovely tct (teenage cancer trust) group which I loved so so much, it’s great to have made so many new friends that know what it’s like to be ill. We got to go to a company called M and M direct…. Where we were each given £100 worth of free clothes which we had pre ordered a few weeks before. We got shown around the factory and learnt how the factory worked and then got taken bowling and for food in Hereford, I has such a great time- although was so so tired afterwards I’ve been in a grump today and I hurt so much from it. Though not as much as I did the week before when we went bowling with Clic Sargent and tct in Cardiff (where the bowling balls were heavier). On Tuesday coming I may be meeting Cardiff City football club in the tct unit with all the gang from there- and I’m very pleased that for once I did have a slightly later clinic appointment as I should be able to see them now!
Being ill has at least come with a few perks like getting to do so much with others in a similar situation and realising your not the only one- but also how lucky you are, unfortunately not everyone is as lucky as I have been and I will never forget Kieran or Johnathon and will always be grateful for the support they and their families gave to me. Being out with the tct gang also made me realise how quickly I was treated as some of the group have been ill for some time- but then they r still aloud to attend school or college or there recovery time is much shorter…. It’s weird how we can all see positives and negatives in each others treatments- if only we didn’t just have to have a 24hour mot and then be fixed- life would be perfect for all of us.
In saying this however I wouldn’t change a thing…. And i know how that sounds to anyone normal- she is glad she got ill? Well I am, simply because I wouldn’t be who I am without it, I wouldn’t have met such amazingly strong friends- who I seem to have got close to so much faster than any other friendship, who will always like or comment on your status to show you they are there, and are online at 3am because just like you they cant sleep… I wouldn’t have learnt what a bone marrow was or what it did, or any of the other weird medical jargon that I now know, and I would have never met the incredible nursing staff that I have, many of whom have no idea what it’s like but will always listen, smile and care. To these people I will always be grateful because they are what have made me… Well me.
so its been awhile- this post was originally posted 7 months prior to this but on a different blog
so in my last post i explained all about my ptld- which was officially given the all clear in about Sept, and although there is still a risk of it returning especially if my cyclosporin level is too low or too high, but I’m now 6 and a half months old. I’ve celebrated my 21st birthday and am beginning to feel a bit more human- although i still have such a long way to go. Currently i have to go to see my consultant once a month- although this was the first month it was suppose to happen and my cyclosporin level was too low and so i had to go back for extra bloods this week and will have to go back next week too!! I’ve had my first cold- which was rather minor and seems to be coming to an end now- but i did make sure i wasn’t out in the cold ect ect.
For my 21st as I’m not aloud to go out clubbing, or drink and the list of things i cant really do is endless i decided that i wanted to do something extra special so i surprised my friends and took them to Beckett’s farm where we did a cookery lesson in the orange kitchen- it was fantastic, even though by the end of it i was so so exhausted i had a blast and its definitely something I’m gonna remember for the rest of my life. Anyway that’s my quick update on how i am getting along- there will be more to come- and I’m gonna try my very hardest to keep up with this whole blogging thing- and maybe eventually there wont be such long gaps in my posts and will actually come to mean something… currently my blog is lost with no real direction- but I’m sure i will find a purpose for it soon enough, but right now its a great place for me to really be me.
For my 21st as I’m not aloud to go out clubbing, or drink and the list of things i cant really do is endless i decided that i wanted to do something extra special so i surprised my friends and took them to Beckett’s farm where we did a cookery lesson in the orange kitchen- it was fantastic, even though by the end of it i was so so exhausted i had a blast and its definitely something I’m gonna remember for the rest of my life. Anyway that’s my quick update on how i am getting along- there will be more to come- and I’m gonna try my very hardest to keep up with this whole blogging thing- and maybe eventually there wont be such long gaps in my posts and will actually come to mean something… currently my blog is lost with no real direction- but I’m sure i will find a purpose for it soon enough, but right now its a great place for me to really be me.
PTLD- July- sept 2010
So 2 weeks after being discarged from cardiff my temp sores- and gets as high as 42.4oC thats 108oF. So i get admitted to Birmingham Queen Elizibeth hospital and they thought i had an infection in my hickman line (a way of giving drugs and taking blood without me being stabbed or give an canular). So my line gets removed, but my temperature still keeps rocketing! I developed Cedifficiel which is a really nasty hospital bug and they treat me for that, they then find an infection in my gaulbladder and began treating that, however i was still getting ill! So they send me for more ultrasounds and more ct scans and they find ptld (post transplant lymporeative diease) so im sent for a pet scan where they inject you with radioactive stuff- its really weird but it shows up everything in a scan. So i had 4 rounds of retuxamav to get rid of it- and my drugs changed. I then had another scan in septemeber in Cardiff’s new pet scanner to see if it had cleared- and it has so im back to being a normal transplant patient now- rather than one that keeps throwing up complications.
The bone marrow transplant 12 May 2010
So i had to have a bone marrow transplant, both my sisters ended up being matches but it was decided that my younger-eldest sister would be my doner she had to go through an operation to have some of her bone marrow removed- this was then mixed with blood and given to me through a drip- prior to this i had to have a week of intensive chemo to suppress my immune system, this made loose my hair which to be honest i really didn’t care about at all. I just wanted to get back to normal. I was in hospital for 9 weeks, and i couldn’t wait to get home- i had such great big plans for the summer holidays however they were soon to dissipate into nothing as i really wasn’t well enough to do anything.
the diagnosis 20th april 2010
So i wake up in the hospital coming to the realisation that i wasn’t gonna be going home just yet, because i probably still wasn’t fixed. I was greeted by 3 doctors- one of which i already knew from orchestra- this made me feel so much better because i felt safe. The consultant that i later saw i also knew- he plays the bassoon in the orchestra. I was told i had a very server aplastic anemia and that my bone marrow had stopped working- it didn’t really sink in. Not until i was told what a bone marrow did- a bone marrow makes your blood- mine had stopped, so i was now completely reliant on blood transfusions until i could have a bone marrow transplant. Which was discussed over the following couple of days- i was moved to the teenage cancer trust unit- because although i didn’t have cancer my treatment would be very similar to leukemia patients treatment. I had no idea what sort of length of time this was going to take, but my first concern was that i was flying to America in 7 weeks and i was really looking forward to going- unfortunately my trip had to be canceled i had to phone my boss and tell her that i was unable to work for her this summer- it was a massive kick in the teeth, but eventually i got over it as i knew that i could go back to camp whenever i was feeling better. What hit me harder was the fact that i would have to take a year out from university.
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