TODAYS ENTRY - 7th FEBRURAY!
A late blog tonight!
Not much to report really, I feel the same, no sickness or anything so far, bit more tired but even that has been ok today. Main discomfort is in my lower back cos of sitting down all bloody day! I need some cream or something I think! Sooty came to see me which was ace as always and I enjoyed that, having a good natter! And I enjoyed the maltesers - well I am as I write!! And can I say Sooty if your reading this I‘m well impressed u joined the Bone Marrow Register – I think its an amazing thing to have done and that goes to any of my friends who have done it and also to those who donate blood too cos I have that a lot as well!! And I should have done it when I could!
Had a very cheery male nurse tonight, kinda reminds me of Kas from downstairs lol. Anyway he collected all my wee that I’ve done a 24 hour sample of! Lol fun stuff!
Aside from that it’s been a standard day, had chemo which is all very boring, had my injection which is all very painful. Had my dressings changed and the biopsy one is finally healed! Woo!! and the old hickman line one is well and truly bruised! Had a good chat on the life-site chatroom tonight which a chatroom for lymphphoma sufferers and people affected by it. And also to Hayley, an online friend I talk to on msn which was great. And also Carly from uni.
I managed to add some photos to Facebook so check those out though I doubt I’ll try and put one on here tonight cos of connection.
Carol and Nan coming tomorrow which shud be good and then Becky on Saturday which I am looking forward too.
Saw Dr. Haynes today too, came to check on how things were going, everything the same, we just wait and see how this all responds really and how long for being the key question. One question I do wanna ask him is what he means by ‘lung involvement’ cos I already know my lump is pressing on my lung - I’ve always known that but does he mean its in my lung now? Cos he told us this after the PET scan you see so I’m unsure now! But next time he comes I’m gonna ask. I only remembered when he’d gone! I might even ask Faith, the nurse, cos she might know.
Also saw some people from a company called Clic Sergeant today who are gonna help me find a psychologist and give me a youth worker who will help me meet others in my situation and stuff and they can provide short holidays and breaks for families free of charge! They are also gonna give me 200 pounds as a grant! So that’s gotta be good!!
I read the instalment of Take A Break today about a lady I know who has the same cancer as me though her initial treatment (RCHOP) has gone to plan. I found it harder to relate too than last weeks article but I understand its her story and her way of showing how she’s managing to deal with everything. I just find it hard to read really sometimes, not just her story, I guess it would be the same for anyones who has been written in this way. It just seems to me that things are going well in a lot of ways with scans showing reduced tumours, something I have very little experience off - yet I still get a negative sense from the article when I want to feel hope from it. If her RCHOP doesn’t work they will be able to offer her other treatments, like me! I hope this makes sense, I probably shouldn’t write about it really. We are in totally different situations and one persons experience is very different from another. But anyway I think I just wish I found the article more positive because I really like this woman and feel she is a very positive person and she has gotten a clear scan now so that’s excellent news! I hope things continue to go well for her!
Also a shout out to Mark, who I don’t know if he reads this but as a fellow Aston student he received some positive news on his last scan and aside from some radiotherapy is cancer free so congrats! And thanks for supporting me while ive been going through everything. I hope I’ve helped you too!!
Anyway, I think that’s all I can say tonight without boring the arse off you all! Still feeling hopeful yet realistic and that’s the way its staying at the min!! Symptoms all the same as yesterday. They say chemo will take about a week to kick in, in that respect but that will clash with my bloods dropping so in a way I may not notice a difference for a few weeks yet potentially though some of my breathing issues should get easier as should the back pain etc even if I feel ill still.
So guys…thanks for reading and night night. xxxxx
Monday, 25 February 2008
Saturday, 9 February 2008
New Blog
Hey, Becky here...just in case you haven't heard, mel's got a new blog as she cant access this one from her hospital internet for some reason...i think she'll write on here again when she gets out but until then theres a new blog at...
http://melsfightnhl2.blog.co.uk/
http://melsfightnhl2.blog.co.uk/
Wednesday, 6 February 2008
The Injection Method and FOOD!
Mmmm, that Ham cob was nice! I’ve just finished eating one pre-prepared before mum left earlier! Tea looked minging so I didn’t even attempt it tonight! Though my dinner was pretty ok – a beef and onion pie. Also had the large concoction of tablets I take before bedtime plus the cough medicine which makes my teeth go all sensitive for some bizarre reason! The food here is ok actually, I think the steroids mean I’ll eat pretty much whatever is in front of me but still I don’t find it as bad as I have done in the past! This morning was met by a great surprise, freshly cooked toast! My only real complaint with food has been breakfast - usually the toast is cold by the time I get it and I just have to force it down so I’m eating something but this morning – Amazing stuff - it was all freshly made and you could like actually taste the butter! Incredible! Small things please in here and it was a pleasant surprise to wake up too! Lol! I still snack on chocolate digestives and lots of Maltesers though! Great stuff! And I’m back on the sandwiches and ham cobs (rolls or whatever u wanna call them!).
Anyway enough about food I think for one day – gosh you can tell I’m on steroids can’t you! My internet is really peeing me off, I got such a god signal in my old room and this one is crap! It just disconnects all the damn time! I hope it improves a bit. I might fiddle about it with a bit tomorrow; see if I can’t figure out a better position for it or something. Also they talked about another wireless connection for me so I might ask about that! I should be grateful I can get anything I guess but after almost a week of great connection, now having these probs is really frustrating and it’s the little things that do frustrate you in here!
Anyway today Debbie Hollingworth came to see me from school and it was really great to see her, I really appreciate people making the effort to come and I loved the muffins, scarf and cream for my itch!! My aunty and uncle also came and it was also great to see them and although they weren’t allowed to bring in the flowers they bought me the thought was there and I do appreciate it!! Sadly Claire was ill and couldn’t come so I was disappointed but I wish her a speedy recovery and I’m sure she’ll be on her way here with Maltesers someday soon!! (No hints there Claire by the way ;P). We talked about normal stuff and about the medical situation etc and it was a welcome distraction from well hospital I guess and I just enjoyed the extra company! Sooty is coming tomorrow so I am looking forward to that!
I had my second day of chemo today. Again no side effects though I am noticing I’m getting more tired in the day, whether that be lack of sleep at night or chemo tiredness kicking in or a mixture of both I’m unsure but apart from that I’ve been lucky and no major issues so far! The nurses are all still great and the doctors popped in to check how I was doing so that was all good.
I had my ‘belly injection’ which is actually called Clexane again today. My poor tummy is so sore from all the little pricks (lol that sounds very bad but how else do I put it??!). And I have 2 bruises!
There are 4 methods of doing this injection and I’m gonna be boring and take you through them!
There’s number one which is the ‘Fast Dart Player’ - the nurse almost throws the injection into you like a dart and pushes the stuff in fast- the end result it that you don’t feel the prick of the injection but the stuff stings as its going in and afterwards a lot!
There’s number two which is the ‘Slow Dart Player’ - the injection is inserted in the same way, like a dart, all quick and to the point but the stuff is pushed in slowly and as a result you get the sting afterwards but not as its going in!
Number three is ‘The Artist’ - they put the injection in slowly and the stuff in slowly, you feel the injection a bit more but you don’t get the sting as it goes in though as always you get it afterwards…the bad side is that it takes longer to go in as well!
And finally number 4 is ‘The Fast Artist’ who puts the injection in slowly which you feel more, then injects the stuff fast so you feel the sting as well when it goes in and afterwards! This is the worst case one!
So they are the 4 methods! I think I prefer the slow dart player though sometimes the fast dart player is ok cos it’s over quicker! Bad side – there’s no way of stopping it stinging afterwards completely and some days it just stings more than others!!! I have an ice pack which I rub over it to help afterwards! Lol you can see how much I’ve thought about this stuff can’t you!!! Sorry to bore you all with that!!! I could give myself these injections but I still can’t bring myself to do it though it would be a fantastic barrier to say I’d overcome it!!! I tend to just pull on my injection face and grin and bare it now tho!!!
So that’s my injection story to gross you all out with! Apart from that I watched coronation street and the England Game which I thought was ok, second half better than the first and Bentley looked good. Pity Owen didn’t play though. I spoke to Hannah and Becky which was fine and good fun and also my hospital phone rang which I got very excited about! And it was a woman from Clic Sergeant who is coming to see me tomorrow about counselling services and also they may provide me with some money so that’s all good!!!
My symptoms are about the same, breathing not great and on oxygen as and when, back pain is easing though I get odd twinges. Oramorph is always at the ready!! My bruise on my old hickman line site is a cracker! I’ve never seen anything like it! I mean it!!!
I’ve decorated my room with some Liverpool stuff and some photos etc so that’s all good, may as well make myself feel at home hey!!! Still feeling ok about everything and thanks for all the supportive texts and messages and everything – still all appreciated! I’m trying to upload some photos on facebook but the internet is taking ages so I dunno if it will work or not!
The days here are ok, they go quicker than you’d think! Sometimes the morning drag before mum and dad get here but to honest even then its not so bad, there’s someone comes in to make your bed and you can doze off if you want so there’s always something really!!! Plus Jeremy Kyle helps for an hour in the morning! I found some quotes form first year today, one from Mand that made me laugh saying ‘Hell there’s so many ho’s out there, if I was a guy I’d f*** them!’ hilarious! And also Soph send me the ‘Needs Special’ quote in a text! So funny! Thanks for those guys – they really made me laugh! And Amar when he said ‘Bitch I ain’t your baby’s daddy!’ I found that one too!
I think that’s me done for the night anyway so I’m gonna head off now! Night night everyone xxx
Anyway enough about food I think for one day – gosh you can tell I’m on steroids can’t you! My internet is really peeing me off, I got such a god signal in my old room and this one is crap! It just disconnects all the damn time! I hope it improves a bit. I might fiddle about it with a bit tomorrow; see if I can’t figure out a better position for it or something. Also they talked about another wireless connection for me so I might ask about that! I should be grateful I can get anything I guess but after almost a week of great connection, now having these probs is really frustrating and it’s the little things that do frustrate you in here!
Anyway today Debbie Hollingworth came to see me from school and it was really great to see her, I really appreciate people making the effort to come and I loved the muffins, scarf and cream for my itch!! My aunty and uncle also came and it was also great to see them and although they weren’t allowed to bring in the flowers they bought me the thought was there and I do appreciate it!! Sadly Claire was ill and couldn’t come so I was disappointed but I wish her a speedy recovery and I’m sure she’ll be on her way here with Maltesers someday soon!! (No hints there Claire by the way ;P). We talked about normal stuff and about the medical situation etc and it was a welcome distraction from well hospital I guess and I just enjoyed the extra company! Sooty is coming tomorrow so I am looking forward to that!
I had my second day of chemo today. Again no side effects though I am noticing I’m getting more tired in the day, whether that be lack of sleep at night or chemo tiredness kicking in or a mixture of both I’m unsure but apart from that I’ve been lucky and no major issues so far! The nurses are all still great and the doctors popped in to check how I was doing so that was all good.
I had my ‘belly injection’ which is actually called Clexane again today. My poor tummy is so sore from all the little pricks (lol that sounds very bad but how else do I put it??!). And I have 2 bruises!
There are 4 methods of doing this injection and I’m gonna be boring and take you through them!
There’s number one which is the ‘Fast Dart Player’ - the nurse almost throws the injection into you like a dart and pushes the stuff in fast- the end result it that you don’t feel the prick of the injection but the stuff stings as its going in and afterwards a lot!
There’s number two which is the ‘Slow Dart Player’ - the injection is inserted in the same way, like a dart, all quick and to the point but the stuff is pushed in slowly and as a result you get the sting afterwards but not as its going in!
Number three is ‘The Artist’ - they put the injection in slowly and the stuff in slowly, you feel the injection a bit more but you don’t get the sting as it goes in though as always you get it afterwards…the bad side is that it takes longer to go in as well!
And finally number 4 is ‘The Fast Artist’ who puts the injection in slowly which you feel more, then injects the stuff fast so you feel the sting as well when it goes in and afterwards! This is the worst case one!
So they are the 4 methods! I think I prefer the slow dart player though sometimes the fast dart player is ok cos it’s over quicker! Bad side – there’s no way of stopping it stinging afterwards completely and some days it just stings more than others!!! I have an ice pack which I rub over it to help afterwards! Lol you can see how much I’ve thought about this stuff can’t you!!! Sorry to bore you all with that!!! I could give myself these injections but I still can’t bring myself to do it though it would be a fantastic barrier to say I’d overcome it!!! I tend to just pull on my injection face and grin and bare it now tho!!!
So that’s my injection story to gross you all out with! Apart from that I watched coronation street and the England Game which I thought was ok, second half better than the first and Bentley looked good. Pity Owen didn’t play though. I spoke to Hannah and Becky which was fine and good fun and also my hospital phone rang which I got very excited about! And it was a woman from Clic Sergeant who is coming to see me tomorrow about counselling services and also they may provide me with some money so that’s all good!!!
My symptoms are about the same, breathing not great and on oxygen as and when, back pain is easing though I get odd twinges. Oramorph is always at the ready!! My bruise on my old hickman line site is a cracker! I’ve never seen anything like it! I mean it!!!
I’ve decorated my room with some Liverpool stuff and some photos etc so that’s all good, may as well make myself feel at home hey!!! Still feeling ok about everything and thanks for all the supportive texts and messages and everything – still all appreciated! I’m trying to upload some photos on facebook but the internet is taking ages so I dunno if it will work or not!
The days here are ok, they go quicker than you’d think! Sometimes the morning drag before mum and dad get here but to honest even then its not so bad, there’s someone comes in to make your bed and you can doze off if you want so there’s always something really!!! Plus Jeremy Kyle helps for an hour in the morning! I found some quotes form first year today, one from Mand that made me laugh saying ‘Hell there’s so many ho’s out there, if I was a guy I’d f*** them!’ hilarious! And also Soph send me the ‘Needs Special’ quote in a text! So funny! Thanks for those guys – they really made me laugh! And Amar when he said ‘Bitch I ain’t your baby’s daddy!’ I found that one too!
I think that’s me done for the night anyway so I’m gonna head off now! Night night everyone xxx
Tuesday, 5 February 2008
New Room but Dodgy Internet!
Hopefully this will be shorter tonight; for once I feel knackered and may have an early night! Well we’ll see!Started my chemo today as planned, Dr. Haynes came and told me they were going ahead despite not getting the funding decision but that was his concern not mine and so that’s that! Anyway I was moved up to the transplant ward today, kinda sad to see all the familiar nurses faces from toghill ward go but the ones up here seem just as nice so far so its all good! I had a wave of tiredness this afternoon after a trip in the wheelchair to the shop! I think its just lack of sleep catching up with me!
Anyhow my new room is good, all on my lonesome now but its ok and I have my own toilet which is easier! Had my chemo between 4 and 6 today. Only connected 2 hours a day for next 4 days. Side effects shud stay away until at least after the weekend, here’s hoping anyhow! Like I said yesterday its when my counts drop I’ll feel the worst. No idea when I’ll be home, a good few weeks yet anyhow but I’m still ok!
My biopsy scar finally looks like its healing up which is great though where my old hickman line is I have a HUGE bruise! Its seriously crazy!!!
New line is all still ok and getting used to it, in fact I’m so impressed with how neat it all looks! My breathing felt very laboured today but it has eased a bit tonight and no back pain so far so that’s good! Lots of visitors tomorrow which will be good! And yes Becky of course I am counting the days until you return on Saturday!!
I couldn’t get on lifesite tonight L annoying but I think it was the chatroom not my internet though I did have internet issues for a while it seems to be working ok now though msn is a bit temperamental! I can’t spell that word!
Erm I don’t know what else to say tonight, apart from I feel fine and I’m looking forward to visitors tomorrow and I might for once get an early night!
For anyone visiting Me I have to emphasise that if you've a cough or cold, or the beginnings of a cough or cold, or you've had a cough or cold or any other disease that's infectious, please stay away from the hospital until you're better. Due to the nature of the treatment on this ward (Bone Marrow and Stem Cell Transplants), they have to be strict. Passing on those germs could have serious and in some cases fatal consequences for the patients, so if you're unsure, please ask.
So that’s that for today I think!
Night night guys xxx
Monday, 4 February 2008
Chemo Delays and Being Realistic!
Well its half 2 in the morning and I’m still awake. Steroids really not aiding sleep these days but I sleep better in the mornings anyway. Well I know I said I was meant to start chemo today but I didn’t! I missed breakfast cos I was fast asleep but I wasn’t bothered. Mum and dad got here about 11ish. I had my dinner which I devoured and had a wash.
I had all my dressings changed on my biopsy, old hickman line site and new hickman line site and everything is ok. This new line looks neater than my old one. Its still a tad sore and it’s a bit swollen but that is normal. They are getting someone to come look at the biopsy one cos its scabbing over and they want something on it to lift the scab off and allow it to finally heal! Its been there since August! Hannah the student nurse sorted it all out anyhow, she’s really nice and chats to us a lot throughout the day which is good. She’s a student too so we’ve got stuff in common!
Anyway after that I was connected up to the flush ready for the chemo but then it transpired that actually it wouldn’t be going ahead today. They have to get the funding for it through Burton Health Authority and they were saying they had a meeting to discuss such matters at the end of the month…err yeh that’s good for me, I need it NOW! Anyway Dr. Haynes is on the case and is sorting it for tomorrow. He said if they don’t get a decision by tomorrow they will just go ahead anyway and worry about funding later. Fact is, I need the treatment soon! It’s scary that funding can affect treatment though, but I’m sure Dr. Haynes will get it done, well I know he will! I had a blood transfusion today as my counts were a bit low and so they thought it might help and may also ease my breathlessness a bit. So that started around 7ish and finished about 1 this morning. No issues as yet with it!
They also need to rush the chemo because they can’t put stem cells back in over a weekend and the chemo takes 4 days followed by a one day rest day before stem cells are put back in so they may have to infuse it a little quicker or maybe they still start Wednesday so the stem cell day will fall on Monday. I guess we’ll know tomorrow but I think they would prefer to go ahead tomorrow if possible.
Faith, my lymphoma nurse came in to talk to us about the actual process now for the next 3-4 weeks. Once I start my high dose chemo it will take 4 days. I am having the E and M drugs from the normal full BEAM chemo regime. The E is for Etoposide and the M is for Melphalan. Etoposide is given days 1-4 for 2 hours a day so I’m not connected all day or anything. Faith said I should tolerate it ok and they can give me some good anti sickness drugs that usually work well. The Melphalan is given over a short amount of time too, cant remember the exact time but I’ll be connected to the drip on that day (day 4) for 24 hours because I have to have a lot of fluids with it, like bag after bag! So I’ll be constantly going to the loo and they monitor your kidney function really closely. This is the harsher of the two drugs and a sore mouth is a common problem so they advise you to suck on ice half an hour before and after the treatment is given to help prevent this and they will give you mouthwashes etc. It can also cause diarrhea (lovely!) but again they can give you stuff for this.
So after day 4 I have a day of rest with no chemotherapy or anything. Then on day 6 the stem cells will be returned. I will most likely be transferred upstairs to the transplant ward for this part as that’s what is usually done. I will be in a side room probably but not in isolation and can still have visitors though if you are ill or have an infection or anything its best to stay away during this time.
So the chemo by day 4 will have destroyed my remaining stem cells and so I need my old ones that were collected a few weeks ago back in me!!
When the stem cells go in Faith said some people experience a funny taste in their mouth, which is either like tinned sweet corn or tomato soup! Apparently it will be short lived though but any visitors that come will be able to smell it for a few days after! I’m hoping for tomato soup!
So the stem cells being put back in will help recover my blood and my system. It is at this point I will probably feel quite rough as they don’t work straight away. However Faith said that once they do start to work they do so pretty quick and within 24 hours you can notice a big difference in wellbeing. After that it is a case of waiting for my counts to come back up. They will be low for a week or so and that’s when I’m most prone to infection and at risk. Once they are at a suitable level I will be able to return home. I don’t know how ill I will feel or how long it will take for the chemo to take my symptoms down etc. It’s very individual and the amount of time I’m here for really will just depend on how I react to it all. So no I have no idea when I’ll be home! They will probably do a scan a few weeks afterwards to see where we are with things.
Donor search has been initiated in case we get to that stage but it will take ages to find one or could do so I will just tell you as and if/when we ever get to that stage.
So that’s my next few weeks basically! And that’s all the medical news for today.
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Aside from that Faith has offered me a counselling service so I can speak to someone outside of my family and friends for support and they will come visit me in hospital or at home. I did have a psychologist but with no longer being in Burton its harder to see her. And I think I need someone outside of everything who I can just chat too. I really like Faith, she’s so easy to talk to and explains everything very well, she's sorting out the Willows Foundation stuff out too.
I’m still feeling ok in myself, same as yesterday really. Taking it as it comes, I’m not getting depressed, I can’t. I’m finding it easier to be normal and in control. I’m being me.
One thing I do want to say and I hope I don’t offend anyone cos I know I always say ‘oh say what u think and I’m never offended’ and I do still mean that and I don’t want you to stop messaging me in fear of offending me cos it doesn’t offend me as such but it makes me wonder if people are taking in what I’m saying. The reality of the situation that I am in. Maybe people just don't know how to react and thats totally understandable. Basically a few people keep saying to me ‘oh its ok you’ll get through this no problems’ and ‘I’m sure you’ll be ok and youll be better soon, its just taking you longer’ and things along those lines.
Well actually no you don’t know that and that’s not realistic, I understand why people say it, to make me feel better, give me hope and everything and like I’ve said, I’m being hopeful that this treatment will get me to bone marrow transplant stage which is my CHANCE of a cure but it ISN'T likely now. At one time I didn't consider not getting the chance of BMT, I just assumed I would, naively probably! And it was explained that I may not get there, I just chose not to hear that part. But my attitude has changed now.
The odds are against us, dramatically, the cure rate is LOW, lower than before. Lower than that 30% I quoted at Christmas. I don’t have any specific stats now, I don’t need them because its my statistic that matters but I do know that. I’m not stupid. I’m not being negative I’m being factual. My cancer is spreading and its aggressive, its never responded for more than 2 weeks before and to get to a BMT I need it to respond for AT LEAST 12 weeks! Really it needs to be longer and it needs to reduce in size alot. It could happen yeh, I’m not denying it and I wish more than anyone that it will but chances are it WON’T. The reality is that I’m looking at 4-6 weeks of holding it, feeling better and then maybe we move on to controlling it. I know I prob sound like I've resigned myself to this but I have to take the facts and the reality. I talked to Faith about it tonight and she explained there were things they could do to make my breathing more comfortable should we get to that stage so my quality of life would be improved and like I wouldn’t have to live with severe breathing difficulties. I could still do stuff, they could potentially control it for some time depending on what options were available. Although it would eventually beat me I could have a while to enjoy myself and live a normalish life!
This doesn’t scare me, it reassures me, I would rather have the knowledge that if I can’t get a cure I can have a quality of life and make the most of however long I have. I know I’m being a bit blunt here but this is how I feel. I pray everyday my tumor will respond and I’ll be in that cure statistic, of course I want nothing more!! I want a long, healthy life!!
But I also realize reality and if I start facing that now then I think I’ll cope better in the future and make the most of what I do have. If anything this has made me realize the time we have here is so precious and you should just make the most of it! I am soooo glad I made the most of my 2 years at uni recently! It’s made me realize the importance of it. So yeh I just wanted to point out this, I don’t know if I should write this stuff really, maybe its too much for people to take in and stuff, but this is my blog and I want some sort of record of everything so I’m putting everything into, no matter how much it might be hard to read. I have so many thoughts, some of them have to spill out onto paper! and everyone darts around the issue I think sometimes. My family dont, we are very honest but I'm finding it harder to deal with people who don't seem to understand the reality of things.
People keep saying I’m amazing for coping how I do and they would just crumble. You wouldn’t, when faced with this you find a way of dealing! You have too! I’m not amazing, I’m faced with a situation and I’m getting on with it, I’m taking control of it and dealing with it how I want, if I wanna feel crap, I will. If I wanna have a positive day I will. But it’s me who decides it. I do need help, its not easy and that’s why I chat to people a lot and am so honest because it helps me. If I bottled it up I wud go crazy! I have a lot of thoughts so writing them down helps me clear my head.
But please don’t feel sorry for me or pity me, I’m not. I’m getting on with it. My life for the next 3 weeks or so is in this hospital so I get on with it, I enjoy what small pleasures I can, like being able to use the net, have visitors, chat to the nurses. It’s my life right now. I’m not trying to be all superior and ‘im coping so well with this’ but I just cant be doing with sitting here living in daydream world where everything is going to be fine and lovely. No, I’m hopeful but I’m REALISTIC! And I think everyone else should be too. As hard and as harsh as that may sound.
Ok rant over and I’m sorry if I like offended everyone! Please don’t stop sending me messages though. If u don’t know what to say say that! Say your finding it hard to deal with if you are, say you agree with me, say you think I’m being unfair by being this honest, say what u think but please be realistic and don’t try and tell me everything will be hunky dory and I’m gonna be fine, you can tell me you hope I’ll be ok but not that I WILL be because u don’t know! And it makes me angry when people say it because I think ‘No your not the doctor, stop living in lala land and come back to reality!’ Hope for me, pray for me but don’t live in the dark.
Anyway this blog is probably too long for people to read now anyway, I’m surprised people do read on for this long. It just gives me something to write late at night when I’m awake! My nurse today was called Melissa, girl from America, lovely she was too! And Hannah the student nurse has already laid claim to taking my stitch out my new line on Friday so she can practice! Lol bless her, I trust her though! Plus cos of where it is I want someone I trust and who is a woman! I have to be a bit exposed when they are doing the dressing etc! I have people coming to visit on wed and thurs and fri so that should be good and mum and dad will be here tomorrow. I do so appreciate them coming everyday, I don’t know how they do it! And how they cope with my constant demands like ‘can I have a ham cob?’ and ‘I need a cup of tea!’ Bex is back on Saturday too so some good freaking out with the line is due!
In terms of symptoms and how I am, my breathing is laboured, I can’t walk to the toilet unless pushed in a chair and it’s hard getting into the chair from the bed. I’m on oxygen overnight and for some periods in the day. My swelling feeling is reduced but flares up randomly during the day. The back pain comes in odd twinges but nothing compared to how bad it was the other night. The line is a bit sore but nothing major. The itching is not as bad as yesterday thankfully! My chest feels generally tight but my cough is being kept at bay. I’m comfortable enough, the steroids do all this and we know they won’t last forever but they are doing a job at the moment. If I stopped taking steroids and had no treatment for about 24 hours my symptoms would be worsen very quickly. That’s the speed at how it grows.
Essentially that’s it for today and we will see what tomorrow brings…I am a bit nervous about the chemo starting but lets just get on with I say and Faith has explained all what to expect. Dr. Haynes should be round in the morning so I will see him then although I don’t expect him to say anything new. So that’s the news from Bed 1, Bay 4 on Toghill Ward in Nottingham City Hospital!
Sorry for being all like angry and stuff. Just have to say what I think. I need to take some more photos cos I have like none to add to this tonight! I'll put an old one up.
night xx
Sunday, 3 February 2008
A Glossary....
Glossary of terms
Ok some of the medical terms I use now must be confusing so I’m writing a short glossary of what certain things mean! Anything anyone is missing out or doesn’t get then please say. There’s some Links at the bottom too.
NHL – Non Hodgkins Lymphoma. A Cancer of the Blood.
Mediastinal large B-cell lymphoma – my type of NHL. It is a rare form of NHL and is a type of diffuse large B-cell lymphoma. It comes from a rare type of B-cell lymphocyte in the thymus gland, behind the breast bone. Its common in younger women aged 25 – 40.
High Grade: means the lymphoma is aggressive and grows quickly. This is usually good as they respond better to treatment. This is what I have.
Low Grade: the lymphoma is slow growing and often you can go years without treatment or symptoms.
Stem Cell Harvest/Collection – Stem cells collected through a special machine that circulates your blood, takes your stem cells from your bloodstream and returns the rest of the blood to you.
Autologous SCT – Stem Cell Transplant using your own cells. High dose chemotherapy given before your own stem cells that have been collected from your bloodstream are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.
Alllogeneic SCT – Stem Cell Transplant using someone else’s stem cells. High dose chemotherapy given before someone else’s stem cells are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.
BMT – Bone Marrow Transplant – Someone else’s bone marrow given back to you after high dose chemotherapy given destroys your own bone marrow and immune system. The new immune system when it grows attacks the cancerous cells. A BMT is basically an SCT but uses stem cells collected from the bone marrow and not the blood stream.
Bone Marrow - Bone marrow is a spongy material that is found inside the bones (particularly the pelvic bones).
Stem Cells – Within the bone marrow, stem cells develop into the different blood cells. Red Cells, White Cells or platelets. When the cells are fully mature they are released into the bloodstream.
Red blood cells - carry oxygen to all cells in the body
White blood cells - which are essential for fighting infection
Platelets - which help the blood to clot and prevent bleeding.
Lymphocytes –a type of white blood cell that form abnormally during lymphoma. Lymphocytes are an essential part of the body's defence against infection and disease. There are two main types of lymphocyte: B-cells and T-cells.
Lymphatic System - The lymphatic system is one of the body's natural defences against infection. It is a complex system made up of lymphatic organs, such as bone marrow, tonsils, the spleen, and lymph nodes (also called lymph glands). They are connected by a network of tiny lymphatic vessels. Lymph nodes are mainly found in the neck, armpit and groin. The number of nodes varies from one part of the body to another. A milky-looking fluid called lymph circulates through the lymphatic vessels. Lymph contains lymphocytes, which are white blood cells. Lymphocytes are an essential part of the body's defence against infection and disease.
There are two main types of lymphocyte: B cells and T cells. All lymphocytes develop in the bone marrow from immature cells called stem cells. Lymphocytes then mature in different parts of the body. Lymphocytes which mature in the thymus gland (behind the breast bone) are called T-cells. Other lymphocytes mature in the bone marrow or lymphatic organs and are called B-cells.
In non-Hodgkin's lymphoma, the lymphocytes start to behave like cancerous cells and grow and multiply uncontrollably,and may not die off in the way they ought to.
Neutropenic – your neutrophils (type of white blood cell) are very low and you have no or very little resistance to infection. You often show no symptoms of infection apart from a high temperature and have to contact the hospital immediately if it goes above 38’C. Your mainly at risk of this 7-14 days post chemo.
Blood Transfusion – Red count is below 8 point something or very low (normal person is 14 I think) and you need an infusion of red cells. Given through a drip.
GvHD – Graft versus Host Disease - If you have stem cells from a donor, even a brother or sister, there is a possibility that the new cells (the graft) will react against your tissues (the host). Basically the donor’s immune system attacks the patient’s body. iIn some people it can become very severe and even life-threatening. It mainly affects the skin, the gut (stomach and bowel) and the liver. The reaction can occur up to six months after a transplant. You can be given medicines to help prevent this effect.
Chemotherapy – Common treatment of lymphoma
RCHOP – the standard chemo for NHL
IVE – my intensive chemotherapy regime I had in derby
BEAM – the high dose chemotherapy that is done as part of the SCT.
Biopsy – The procedure done to get a sample of a swollen lymph node. My biospy involved surgery to remove a sample from my chest.
Remission – No sign of cancer in the body - 5 years remission is classe as cure
PET scan – Scan which invoves injecting radioactive substaces into you to light up active tumour
CT scan – Scan which shows 3D image of the inside of the body, can identify if there is a mass there but not always tell if its active
GCSF Injections – small injections given into the stomach under the skin to stimulate white cell growth. They encourage the stem cells to spill out into the bloodstream as white cells. Often given before a stem cell harvest and also if your white counts needs to be up quicker in time to have treatments. Can be injected yourself or a nurse can do it. The side effects include intense aches and pains! The injection itself is fine!
Clexane Injections – the painful injections I have in my stomach to prevent clotting when I am in hospital and because the tumor is pressing on veins it helps my blood to thin. Again the injection itself is only under the skin and not painful but the stinging afterwards does hurt!!
Steroids – Tablets that help my symptoms. Side effects include major appetite, mood swings, bloating and not being able to sleep!
SVCO - The superior vena cava (SVC) is a large vein that carries blood from the body straight to the heart. It lies in the middle of the chest, behind the breast bone (sternum). Superior vena cava obstruction (SVCO) occurs when something blocks the blood from flowing along the SVC. The walls of the SVC are thin, meaning they easily become squashed (compressed). This is what causes my swelling feeling in my face and is a sure sign my symptoms are on their way back. It is part of the reason for the clexane injections. Symptoms include the following and I get generally all of these except the swollen blue veins on the chest.
· breathlessness, due to swelling around the windpipe (trachea)
· headaches, which worsen on leaning forward or bending over
· facial swelling with a dark red look to the complexion
· swollen neck
· swollen arms and hands
· visible swollen blue veins on the chest
· dizziness.
Steroids help reduce all of these symptoms.
Central Line/Hickman Line/Femerol Line – the insertion of a thin tube in to usually your chest but in my case this time, in my groin/leg area that you can administer chemotherapy through and get blood from. Involves a minor surgical procedure that you are awake for but can be sedated throughout.
Hematology - the study of blood diseases. I am under the Hematology team not an oncology team. Oncology deals with most cancers but mine is under Hematology as it is a cancer of the blood.
Cannula/Venflon - small needle inserted into the back of your hand or into another vein that can be used to inject medicines intraveneously. This is done for most standard chemotherapies though if you have a line in you don't need as many of these.
Blood Sugar test - pricking the end of your finger to draw blood and measuring your BM on a little machine. Done if you are diabetic or if you are on steroids. Not painful.
Blood Test - Inserting a needle into a vein into your elbow and drawing blood. A regular/daily occurance as a hematology patient. They love their blood! Mine is now taken out of my line but if that didn't work i have it done the normal way.
Blood Gases - A blood test but taken out of the artery in the wrist. Very very painful! not gonna lie! they sometimes give you a local anasthetic before they do this. I have had it done twice, neither time under local! it checks the amount of oxgygen in your blood more accuratley.
Blood cultures - done as an infection screen, like a normal blood test but checks for any bugs in the blood.
Oramorph - oral morphine - a godsend for pain relief
Ok some of the medical terms I use now must be confusing so I’m writing a short glossary of what certain things mean! Anything anyone is missing out or doesn’t get then please say. There’s some Links at the bottom too.
NHL – Non Hodgkins Lymphoma. A Cancer of the Blood.
Mediastinal large B-cell lymphoma – my type of NHL. It is a rare form of NHL and is a type of diffuse large B-cell lymphoma. It comes from a rare type of B-cell lymphocyte in the thymus gland, behind the breast bone. Its common in younger women aged 25 – 40.
High Grade: means the lymphoma is aggressive and grows quickly. This is usually good as they respond better to treatment. This is what I have.
Low Grade: the lymphoma is slow growing and often you can go years without treatment or symptoms.
Stem Cell Harvest/Collection – Stem cells collected through a special machine that circulates your blood, takes your stem cells from your bloodstream and returns the rest of the blood to you.
Autologous SCT – Stem Cell Transplant using your own cells. High dose chemotherapy given before your own stem cells that have been collected from your bloodstream are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.
Alllogeneic SCT – Stem Cell Transplant using someone else’s stem cells. High dose chemotherapy given before someone else’s stem cells are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.
BMT – Bone Marrow Transplant – Someone else’s bone marrow given back to you after high dose chemotherapy given destroys your own bone marrow and immune system. The new immune system when it grows attacks the cancerous cells. A BMT is basically an SCT but uses stem cells collected from the bone marrow and not the blood stream.
Bone Marrow - Bone marrow is a spongy material that is found inside the bones (particularly the pelvic bones).
Stem Cells – Within the bone marrow, stem cells develop into the different blood cells. Red Cells, White Cells or platelets. When the cells are fully mature they are released into the bloodstream.
Red blood cells - carry oxygen to all cells in the body
White blood cells - which are essential for fighting infection
Platelets - which help the blood to clot and prevent bleeding.
Lymphocytes –a type of white blood cell that form abnormally during lymphoma. Lymphocytes are an essential part of the body's defence against infection and disease. There are two main types of lymphocyte: B-cells and T-cells.
Lymphatic System - The lymphatic system is one of the body's natural defences against infection. It is a complex system made up of lymphatic organs, such as bone marrow, tonsils, the spleen, and lymph nodes (also called lymph glands). They are connected by a network of tiny lymphatic vessels. Lymph nodes are mainly found in the neck, armpit and groin. The number of nodes varies from one part of the body to another. A milky-looking fluid called lymph circulates through the lymphatic vessels. Lymph contains lymphocytes, which are white blood cells. Lymphocytes are an essential part of the body's defence against infection and disease.
There are two main types of lymphocyte: B cells and T cells. All lymphocytes develop in the bone marrow from immature cells called stem cells. Lymphocytes then mature in different parts of the body. Lymphocytes which mature in the thymus gland (behind the breast bone) are called T-cells. Other lymphocytes mature in the bone marrow or lymphatic organs and are called B-cells.
In non-Hodgkin's lymphoma, the lymphocytes start to behave like cancerous cells and grow and multiply uncontrollably,and may not die off in the way they ought to.
Neutropenic – your neutrophils (type of white blood cell) are very low and you have no or very little resistance to infection. You often show no symptoms of infection apart from a high temperature and have to contact the hospital immediately if it goes above 38’C. Your mainly at risk of this 7-14 days post chemo.
Blood Transfusion – Red count is below 8 point something or very low (normal person is 14 I think) and you need an infusion of red cells. Given through a drip.
GvHD – Graft versus Host Disease - If you have stem cells from a donor, even a brother or sister, there is a possibility that the new cells (the graft) will react against your tissues (the host). Basically the donor’s immune system attacks the patient’s body. iIn some people it can become very severe and even life-threatening. It mainly affects the skin, the gut (stomach and bowel) and the liver. The reaction can occur up to six months after a transplant. You can be given medicines to help prevent this effect.
Chemotherapy – Common treatment of lymphoma
RCHOP – the standard chemo for NHL
IVE – my intensive chemotherapy regime I had in derby
BEAM – the high dose chemotherapy that is done as part of the SCT.
Biopsy – The procedure done to get a sample of a swollen lymph node. My biospy involved surgery to remove a sample from my chest.
Remission – No sign of cancer in the body - 5 years remission is classe as cure
PET scan – Scan which invoves injecting radioactive substaces into you to light up active tumour
CT scan – Scan which shows 3D image of the inside of the body, can identify if there is a mass there but not always tell if its active
GCSF Injections – small injections given into the stomach under the skin to stimulate white cell growth. They encourage the stem cells to spill out into the bloodstream as white cells. Often given before a stem cell harvest and also if your white counts needs to be up quicker in time to have treatments. Can be injected yourself or a nurse can do it. The side effects include intense aches and pains! The injection itself is fine!
Clexane Injections – the painful injections I have in my stomach to prevent clotting when I am in hospital and because the tumor is pressing on veins it helps my blood to thin. Again the injection itself is only under the skin and not painful but the stinging afterwards does hurt!!
Steroids – Tablets that help my symptoms. Side effects include major appetite, mood swings, bloating and not being able to sleep!
SVCO - The superior vena cava (SVC) is a large vein that carries blood from the body straight to the heart. It lies in the middle of the chest, behind the breast bone (sternum). Superior vena cava obstruction (SVCO) occurs when something blocks the blood from flowing along the SVC. The walls of the SVC are thin, meaning they easily become squashed (compressed). This is what causes my swelling feeling in my face and is a sure sign my symptoms are on their way back. It is part of the reason for the clexane injections. Symptoms include the following and I get generally all of these except the swollen blue veins on the chest.
· breathlessness, due to swelling around the windpipe (trachea)
· headaches, which worsen on leaning forward or bending over
· facial swelling with a dark red look to the complexion
· swollen neck
· swollen arms and hands
· visible swollen blue veins on the chest
· dizziness.
Steroids help reduce all of these symptoms.
Central Line/Hickman Line/Femerol Line – the insertion of a thin tube in to usually your chest but in my case this time, in my groin/leg area that you can administer chemotherapy through and get blood from. Involves a minor surgical procedure that you are awake for but can be sedated throughout.
Hematology - the study of blood diseases. I am under the Hematology team not an oncology team. Oncology deals with most cancers but mine is under Hematology as it is a cancer of the blood.
Cannula/Venflon - small needle inserted into the back of your hand or into another vein that can be used to inject medicines intraveneously. This is done for most standard chemotherapies though if you have a line in you don't need as many of these.
Blood Sugar test - pricking the end of your finger to draw blood and measuring your BM on a little machine. Done if you are diabetic or if you are on steroids. Not painful.
Blood Test - Inserting a needle into a vein into your elbow and drawing blood. A regular/daily occurance as a hematology patient. They love their blood! Mine is now taken out of my line but if that didn't work i have it done the normal way.
Blood Gases - A blood test but taken out of the artery in the wrist. Very very painful! not gonna lie! they sometimes give you a local anasthetic before they do this. I have had it done twice, neither time under local! it checks the amount of oxgygen in your blood more accuratley.
Blood cultures - done as an infection screen, like a normal blood test but checks for any bugs in the blood.
Oramorph - oral morphine - a godsend for pain relief
Palliative Care - means a cure is no longer an option and treatment turns to controlling the disease for as long as possible with chemo/radiotherapy, other treatments.
Terminal diagnosis - palliative care is essentially a terminal diagnosis, eventually the cancer will resisit it though sometimes it can be controlled for long amounts of time. When palliative care stops working they just treat the symptoms and ease any pain etc.
BP - Blood pressure, part of daily observations. Mine is usually slightly low for some reason!
Sats - Saturation levels - measures oxygen levels. normal range is 99-100. Mine are about 93 at the min without oxygen, sometimes up to 95. with oxygen they can get up to 97.
Temperature - obvious i know but is part of obs done each day, normal range is 35'c to 37.5. anyhing above 38 is worrying. 2 consistent readings between 37.5 and 37.9 can also cause concern.Pulse - again obvious - meausres your heart rate, normal person's is between 80 - 100. Mine usually averages around 117 - 125ish. Does sometimes go up to 140ish when symptoms are bad. This is known as tachycardic. It once peaked at 280 when I had a heart scare, averaging around 180 for most of that night. Since then I have had a heart scan it has come back clear and they think it was due to swollen lymph nodes around the heart or a reaction to a blood transfusion.
LINKS
CancerBackup's page on my type of NHL:
http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin/TypesofNHL/MediastinallargeB-cell
CancerBackup's general page on NHL:
http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin
CancerBackup's Page on some of the treatment I have/will have:
http://www.cancerbackup.org.uk/Treatments
CancerBackup's page on Blood Transfusions:
http://www.cancerbackup.org.uk/Treatments/Supportivetherapies/Bloodtransfusions
CancerBackup's page on Central Lines:
http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Centralline
General site on NHL - some very good personal stories and information
http://www.lymphoma-net.org/
The Lymphoma Association and Lifesite
http://www.lymphoma.org.uk/
The Macmillan Page - the discussion topic area is good and I sometimes post on it as mellfc
http://www.macmillan.org.uk/
My friend Hayley's Blog, she has Throat Cancer, her blog inspired mine
http://www.kickingcancersarse.blogspot.com/
My Dads Blog
http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=237496223
My Facebook Group
http://aston.facebook.com/group.php?gid=6829213762
A chatting to Friends day!
Hey everyoneWell a pretty uneventful day really in terms of medical stuff. Woke up at 6am to the usual obs; blood pressure, sats and temperature and also had bloods taken, through my new line I might add lol! All in working order. Then I dozed for a bit, surfed the internet via my phone and spoke to Becky on the phone just after elevenish. It was good talking to Bex and she seems good at the moment, apart from a nose bleed! Thats me and Bex last Sunday when I first came into hospital. We watched the FA cup game in the Day Room!
Mum and dad arrived then and I had a rather nice - by - hospital - standards beef roast dinner which I ate all of! Steroids eh! The on-call doctor was pleased with me and was glad to see the steroids had had an easing effect. The nurse I had today was nice enough again, a male guy I haven’t had before, not very chatty but then to be honest I haven’t really needed anything doing today!
I can’t stop itching though which is annoying! It’s a symptom of the lymphoma but it’s just so irritating! Itchy arms and legs and back! The weirdness of this disease is just bizarre! Stitches and wounds from both lines are all itching too which is a good sign as it shows they must be healing up. My back pain has been kept at bay today, slight twinges but nothing significant and I’ve not had painkillers since 7am which is a record in the last 2 days! I was on them every hour! The steroids have eased my breathing and although I’m still pretty much bedridden I can climb out of bed easier and be wheeled to the toilet at least! I’m still on and off oxygen to ease things and I can still feel swelling in my face but it’s nowhere near as bad as I felt yesterday and the day before. My leg is less sore from the line as well which is helping movement.
Then this afternoon I had some friends from uni visit, thanks to Bex, Mark, Andy, Nat Sarah and Steph who all came, I really appreciated it and I liked the chocolates, cake and juice!! So thanks again, it really does help seeing familiar faces and I can’t say enough how much I enjoyed seeing you all there! And for making the effort to come! It really does show how great everyone at Aston has been throughout all of this. Please feel free to visit again whenever, I can’t stress enough how much I enjoy seeing people.
I spoke to Rachel on the phone after that for about an hour or so and it was great to catch up, even if the news isn’t the greatest to tell I find it better being open and honest with people and I think it was good for us to talk about it all and what happens now. It’s better to be realistic as hard as it may be to face. I think I’m coping ok with everything at the moment which is maybe helping everyone else, I dunno if that sounds bigheaded! But I mean like I’m not shutting myself away into a depression and I’m being quite hopeful and taking each day at a time and not focusing too much on the what ifs and the future so it makes it easier to be normal and focus on getting through each day. I’m being realistic but I still have to have the hope that the unrealistic will happen if that makes sense! Maybe my tumour will suddenly decide to respond for the amount of time I need, u never know! But at the same time I have to be realistic so I’m not let down dramatically if it does go wrong again. Its about balance. And maybe if I’m like that and get that right it helps other people deal with it a bit more easily as well, I dunno if I’m explaining this very well! Lol. Anyway the gist of that was it was good to chat to Rachel! And I missed the weekend in Reading but I was there in spirit guys!! It sounds like you had a good time anyways so that’s cool!
After that mum and dad came back, I spoke to nan on the phone. I can tell a change in nan now, I can’t put my finger on it but she seems to finally be living in the real world with this illness and realising how serious it is and I think it worries her (well obviously) but she is still treating me normally and is still hopeful which is good and is what I need but I can tell she is beginning to accept the truth and everything now which is good also I think. The problem is she doesn’t have anyone at home now to talk too now my granddad is gone so it’s harder for her to get constant reassurance and I think she needs that from us more now. But I spoke to her and I think she appreciates it and was glad to hear that I was doing better today.
After tea I watched dancing on ice which I don’t think is as good as in previous years actually but its something to keep an eye on! I think Suzanne, Gareth Gates and Chris from Hollyoaks are the best and that girl who used to be in Coronation Street too isn’t bad. Glad Aggie went though, she was really crap to be fair!
I also phoned Hammad tonight as I had promised to today as he got back from skiing and obviously had only just found out the weeks events! We concluded in future when he leaves the country or goes on holiday he should pre-warn the hospitals I’ll be in as something is bound to go wrong! But we chatted for a good hour, glad to hear skiing was good and obviously we chatted about what had happened this week. Bit of a shock to come back from holiday too but Hammad is always easy to chat too and says the right things so it was good again, like Rachel, to get everything out and be honest. Like he said I’m trying to keep things as normal as possible and keep the problems physical rather than letting them completely take over mentally and he seemed to think I was doing well with that so I’ll take his word for it and as a compliment! One day at a time and not letting it take over in a depressive way is the way forward. Obviously I have my sad moments and my depressing moments but at the moment they are rare and I am actually quite surprised at myself at how I’m managing to deal. I keep expecting me to like have a moment where it all just hits me and I end up in tears but it just hasn’t happened yet! I plan to just enjoy the days when I can do stuff and get through the days when I’m weaker. I’ll make the most of what I can do each day. Reality will hit me soon enough and I’ll have a down day I know I will but I’m ok at the min and trying to keep it that way! Steroids help!
There is an organisation called the Willows Foundation and it’s an organisation that arranges special days for young people with life threatening illnesses, so like they’ll pay for you to go to a West End Show or something or a football game. Anyway I’ve decided to apply for a special day and I should qualify no problem as I match all the criteria. My original idea was to have a day at Anfield watching a league match there but I don’t think that’s gonna be realistic and with match days only being on certain days etc and the travelling required I just don’t see it happening. Plus that is something I could pay for myself and organise in the future if it is possible.
So I have decided to apply for a social afternoon with my friends and family, say between 20-30 people, I would hire out a hall in Burton (I have somewhere in mind) and there would be a meal and some catering put on and I would be able to invite family and friends and have a kind of mini party I guess! It’s something I haven’t been able to do, like go out and socialise properly with everyone together and it would be a chance for all my close friends from uni and home and my family as well to enjoy a day together and just generally have a good time. I wouldn’t have it as an alcoholic thing, like I would have wine or something with dinner but the idea wouldn’t be to come and get pissed as that’s not what it would be about. Plus I can’t drink and I’m selfish! I would apply for them to pay for the price of the hall, the food and the travelling expenses of anyone coming from far away such as people from uni, obviously I don’t know how much money I’ll get but it should cover most people’s costs. It would be done at a weekend and I would give people plenty of notice. Obviously I can’t invite everyone as much as I would love too but I’ll sort that out nearer the time about who can/couldn’t come etc. But yeh that’s my plan for that. I’m gonna send the form off in the next week or so. Hopefully it should all work out and it gives me something to look forward too as well!
Aside from that I’ve done nothing else today. Think Chemo should start tomorrow or Tuesday latest I would I think so I guess we’ll find out everything in the next few days. I don’t know much about the regime at all really in terms of how long I’m connected to the drip and stuff. I’ll ask tomorrow. Guess I’m slightly nervous about it cos its strong stuff and I dunno how ill I’m gonna feel but to be honest as long as it starts to make my symptoms disappear I’ll cope with the side effects cos I know they are temporary! Hate this whole not being able to breathe properly malarkey! My belly injections continue as well and they still sting but I think I’m getting used to it! The nurses all have different ways of giving them, some put them in slowly which hurts more, others like jab them in like a dart which sounds more painful but actually isn’t!! Just had some lovely oramorph to ensure the back pain stays away overnight! Hate the stuff but it does the trick!
Messages and visits are still appreciated as are texts which I have had plenty of so thanks again! Watched Match of the Day tonight without knowing the scores, shocked by Villa score! That’s the only thing I don’t have here….sky sports! But I can cope without! I’m settled here now and realise this is home for the next 3-4 weeks and I know I couldn’t be at home right now so that’s fine! Anyway that’s me done for tonight. I finish the evening as I started the day, with obs and a blood sugar test!
Night Night xxxxx
I can’t stop itching though which is annoying! It’s a symptom of the lymphoma but it’s just so irritating! Itchy arms and legs and back! The weirdness of this disease is just bizarre! Stitches and wounds from both lines are all itching too which is a good sign as it shows they must be healing up. My back pain has been kept at bay today, slight twinges but nothing significant and I’ve not had painkillers since 7am which is a record in the last 2 days! I was on them every hour! The steroids have eased my breathing and although I’m still pretty much bedridden I can climb out of bed easier and be wheeled to the toilet at least! I’m still on and off oxygen to ease things and I can still feel swelling in my face but it’s nowhere near as bad as I felt yesterday and the day before. My leg is less sore from the line as well which is helping movement.
Then this afternoon I had some friends from uni visit, thanks to Bex, Mark, Andy, Nat Sarah and Steph who all came, I really appreciated it and I liked the chocolates, cake and juice!! So thanks again, it really does help seeing familiar faces and I can’t say enough how much I enjoyed seeing you all there! And for making the effort to come! It really does show how great everyone at Aston has been throughout all of this. Please feel free to visit again whenever, I can’t stress enough how much I enjoy seeing people.
I spoke to Rachel on the phone after that for about an hour or so and it was great to catch up, even if the news isn’t the greatest to tell I find it better being open and honest with people and I think it was good for us to talk about it all and what happens now. It’s better to be realistic as hard as it may be to face. I think I’m coping ok with everything at the moment which is maybe helping everyone else, I dunno if that sounds bigheaded! But I mean like I’m not shutting myself away into a depression and I’m being quite hopeful and taking each day at a time and not focusing too much on the what ifs and the future so it makes it easier to be normal and focus on getting through each day. I’m being realistic but I still have to have the hope that the unrealistic will happen if that makes sense! Maybe my tumour will suddenly decide to respond for the amount of time I need, u never know! But at the same time I have to be realistic so I’m not let down dramatically if it does go wrong again. Its about balance. And maybe if I’m like that and get that right it helps other people deal with it a bit more easily as well, I dunno if I’m explaining this very well! Lol. Anyway the gist of that was it was good to chat to Rachel! And I missed the weekend in Reading but I was there in spirit guys!! It sounds like you had a good time anyways so that’s cool!
After that mum and dad came back, I spoke to nan on the phone. I can tell a change in nan now, I can’t put my finger on it but she seems to finally be living in the real world with this illness and realising how serious it is and I think it worries her (well obviously) but she is still treating me normally and is still hopeful which is good and is what I need but I can tell she is beginning to accept the truth and everything now which is good also I think. The problem is she doesn’t have anyone at home now to talk too now my granddad is gone so it’s harder for her to get constant reassurance and I think she needs that from us more now. But I spoke to her and I think she appreciates it and was glad to hear that I was doing better today.
After tea I watched dancing on ice which I don’t think is as good as in previous years actually but its something to keep an eye on! I think Suzanne, Gareth Gates and Chris from Hollyoaks are the best and that girl who used to be in Coronation Street too isn’t bad. Glad Aggie went though, she was really crap to be fair!
I also phoned Hammad tonight as I had promised to today as he got back from skiing and obviously had only just found out the weeks events! We concluded in future when he leaves the country or goes on holiday he should pre-warn the hospitals I’ll be in as something is bound to go wrong! But we chatted for a good hour, glad to hear skiing was good and obviously we chatted about what had happened this week. Bit of a shock to come back from holiday too but Hammad is always easy to chat too and says the right things so it was good again, like Rachel, to get everything out and be honest. Like he said I’m trying to keep things as normal as possible and keep the problems physical rather than letting them completely take over mentally and he seemed to think I was doing well with that so I’ll take his word for it and as a compliment! One day at a time and not letting it take over in a depressive way is the way forward. Obviously I have my sad moments and my depressing moments but at the moment they are rare and I am actually quite surprised at myself at how I’m managing to deal. I keep expecting me to like have a moment where it all just hits me and I end up in tears but it just hasn’t happened yet! I plan to just enjoy the days when I can do stuff and get through the days when I’m weaker. I’ll make the most of what I can do each day. Reality will hit me soon enough and I’ll have a down day I know I will but I’m ok at the min and trying to keep it that way! Steroids help!
There is an organisation called the Willows Foundation and it’s an organisation that arranges special days for young people with life threatening illnesses, so like they’ll pay for you to go to a West End Show or something or a football game. Anyway I’ve decided to apply for a special day and I should qualify no problem as I match all the criteria. My original idea was to have a day at Anfield watching a league match there but I don’t think that’s gonna be realistic and with match days only being on certain days etc and the travelling required I just don’t see it happening. Plus that is something I could pay for myself and organise in the future if it is possible.
So I have decided to apply for a social afternoon with my friends and family, say between 20-30 people, I would hire out a hall in Burton (I have somewhere in mind) and there would be a meal and some catering put on and I would be able to invite family and friends and have a kind of mini party I guess! It’s something I haven’t been able to do, like go out and socialise properly with everyone together and it would be a chance for all my close friends from uni and home and my family as well to enjoy a day together and just generally have a good time. I wouldn’t have it as an alcoholic thing, like I would have wine or something with dinner but the idea wouldn’t be to come and get pissed as that’s not what it would be about. Plus I can’t drink and I’m selfish! I would apply for them to pay for the price of the hall, the food and the travelling expenses of anyone coming from far away such as people from uni, obviously I don’t know how much money I’ll get but it should cover most people’s costs. It would be done at a weekend and I would give people plenty of notice. Obviously I can’t invite everyone as much as I would love too but I’ll sort that out nearer the time about who can/couldn’t come etc. But yeh that’s my plan for that. I’m gonna send the form off in the next week or so. Hopefully it should all work out and it gives me something to look forward too as well!
Aside from that I’ve done nothing else today. Think Chemo should start tomorrow or Tuesday latest I would I think so I guess we’ll find out everything in the next few days. I don’t know much about the regime at all really in terms of how long I’m connected to the drip and stuff. I’ll ask tomorrow. Guess I’m slightly nervous about it cos its strong stuff and I dunno how ill I’m gonna feel but to be honest as long as it starts to make my symptoms disappear I’ll cope with the side effects cos I know they are temporary! Hate this whole not being able to breathe properly malarkey! My belly injections continue as well and they still sting but I think I’m getting used to it! The nurses all have different ways of giving them, some put them in slowly which hurts more, others like jab them in like a dart which sounds more painful but actually isn’t!! Just had some lovely oramorph to ensure the back pain stays away overnight! Hate the stuff but it does the trick!
Messages and visits are still appreciated as are texts which I have had plenty of so thanks again! Watched Match of the Day tonight without knowing the scores, shocked by Villa score! That’s the only thing I don’t have here….sky sports! But I can cope without! I’m settled here now and realise this is home for the next 3-4 weeks and I know I couldn’t be at home right now so that’s fine! Anyway that’s me done for tonight. I finish the evening as I started the day, with obs and a blood sugar test!
Night Night xxxxx
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