New Blog entry

BRAND SPANKING NEW BLOG

Ok so we’re up and running officially again now! Woo and I hope you all found my new blog! I’ve tried to make it all clear anyways!

There is nothing much to report medically. Everything is the same in hospital. No major side effects as yet from the chemo but they are expected more on Monday especially with regards to a sore mouth though I hope they can still keep the sickness at bay! I get a rest from chemo tomorrow as have had my 4 days worth of ‘Eptopiside’ now. I start fluids on Sunday with the last bit of the chemo being given on Monday. So I’’ll be constantly going to the toilet Sunday/Monday! My line is all working ok which is fantastic, in fact I will have the stitch out of it tomorrow.

And so everything so far in terms of chemo has gone smoothly. It went up for 2 hours a day, through a bag, I never felt a thing and that’s that! I saw Dr. Haynes yesterday like I said but there was nothing new to report really. The funding issues were all sorted out so we’re just getting on with things! I finished my 24 hour weeing sample this morning so that was nice, no more weeing in bedpans till Sunday now lol. Dr. Macmillan who is Dr. Haynes colleague popped by today to check my progress and how things were going and like he said the chemo I’ve had the last 4 days isn’t the key one really, it’s the one I have on Monday and how these work together that will get me hopefully some kind of response and shrinkage of the tumors for however long.

My symptoms are still here, they haven’t improved really but I’m comfortable enough, I can walk to my en suite bathroom but that is my limit. Pain in my back is decreased though still get odd twinges and on oramorph daily to help with it. I'm still on high dose steroids called Dexamethazone (spelling may be wrong there!) which help keep things comfortable and also make me eat loads!! lol so my appetite is good even if the food that’s put in front of me is average! I think it might be sausage, chips and beans tomorrow though…..interesting!

Having the anti - clotting injections everyday in my tummy still, they say when/if my platelet count drops below 50 which is could potentially do next week I won’t need them as my blood will be thing enough! But at the min I’m on a high dose. To be honest as painful as they are I know they are doing it for a reason and that makes it worth it! Without them my swelling feelings and symptoms would be worse and much more dangerous so I feel in a way more comfortable having them! Even if my poor tummy is so bruised! My old wound where my Hickman line was is well n truly bruised! I’m quite proud of it!! My nurse Kaz from downstairs came to say hey today which was nice though my nan always embarrasses me in front of the nurses lol! She means well bless her. It was nice seeing Carol and Nan as well even though I hope it doesn’t upset nan coming, I want her to be ok with things though I know that’s hard. Becky is coming tomorrow so I am looking forward to that. And Sophie and Nick hopefully on Sunday.

I didn’t sleep really last night and as a result slept a bit during the day today but I kinda like chilling in the day sometimes! I hope I wasn’t too boring company for mum! I text Dan Robinson too in the middle of the night (well his daytime as he is in NZ) as I was so wide awake so thanks for texting me back Dan! Sleeping isn’t really an issue here, I sleep when I feel like it to be honest! I won’t be too much later in bed tonight but it’s still late really I know! I think the nurse last night thought I’d just stayed up all night lol! I was on life-site last night (Lymphoma association website) and I find the chatroom so useful, esp when I’m in here so thanks to anyone who was on there last night. Also I am gonna phone the Lymphoma Team next week or over weekend for a chat as they are always so helpful in the chatroom I figure why not use their phone service as well and it might help to chat a bit. Also for anyone who is affected by lymphoma you can ring them or chat about different issues, you don’t have to have the disease to use their service. Their website is in my LINKS section in the glossary but for anyone interested its:

http://www.lifesite.info/start.html,

The general lymphoma association website is full of info as well about my disease.
I’m also seeing a psychologist eventually but that is being sorted out at the min. One of the girls from the Life-site is ringing me over the weekend as well so that will be cool to chat, and she’s ringing from Uruguay! I’m still feeling ok in myself and eveything but I think it just might help to chat through some issues with these people cos obviously I do have issues! I’m not made of total iron!
I felt a bit down today but I think it was mainly tiredness to be honest and once I’d closed my eyes for ten minutes I felt fine again! Sometimes I have moments like that! I think the unfairness of things just hits me for a sec and then I snap out of it. I’m scared of getting upset at the min as if I get upset about one thing I’m frightened I’ll not be able to stop getting upset and in here I just don’t think I could cope with feeling low or depressed. I need to keep my spirits up and try and remain as ok as possible with the whole situation. Like my ‘hope for the best but be realistic’ attitude is working me right now so I wanna keep it that way! I think I sometimes like to forget how ill I actually am. I mean I can’t breathe but that seems normal to me now! Which when you think about it is pretty scary!! I don’t like to think about the tumors growing in me really, that might scare me more. It’s weird.

Although I’m kind of curious to see my scan, just to see what it looks like, I might ask if I can look at it. Enough about that anyhow! I’m planning my Willows foundation thing this weekend so I will update you on the plans for that over the weekend – I’m pretty excited about it to be honest!
Also the woman who I shared a room with downstairs has gone home today so that’s great news, her cancer was NHL but was terminal and really were aiming to get her home and comfortable and living some quality of life for however long. They were hoping to get her to visit London to see some family soon so I hope she gets to do what she wants. She was lovely.

I wrote yesterday about the Take a Break article. I’m sorry if I offended anyone with it but I just feel I have to say what I think. I had a letter today from Aston asking about going in to choose my final year options! Lol I must still be on the list of second year students even though I’m on leave of absence! I think they may have wanted me to do 2nd year before final year! Lol. I will email them soon, I have no idea what I have to do with regards to uni. I think at the min I will just keep it open and stay on leave of absence cos u never know. I just don’t wanna abandon everything yet even though I don’t think I would return should I get a cure I don’t wanna rule it out!

Finally getting some money through from the government, if you read my dad’s blog you will understand our battle for financial support! Well we’ve got it now but boy has it taken time!! I will not be supporting labour at the next election. I don’t know who I will be supporting but it sure as hell won’t be them!

Someone came on msn tonight who I know briefly from uni and spoke to me. They aren’t on face-book and although they know I have cancer they wouldn’t have known how things have progressed. He asked how it was all going and I briefly explained you know ‘not good, treatments haven’t gone to plan and I’m now not very likely to get a cure but I’m remaining hopeful until told for definite’ and his response was: ‘hang in there, you’ll be fine.’ I actually wanted to scream ‘DID U JUST READ WHAT I PUT!!!’ lol, I mean I didn’t say that and I ignored him and just carried on talking about other things because I just thought what a silly thing to say when I’ve told you that! It’s someone I barely know so I can get over it, I just thought it was a bizarre response. Not even ‘sorry to hear that, hope things get better’ just ‘you’ll be fine!’ I found it very strange.

And I spoke to Amar who says he avoids my blog which I understand, he says it’s hard to read and he prefers pretending I’m ok sometimes and then he can still take the mick outa me! This is fine by me!! I’m used to it!!! Lol!! I understand if some people don’t like reading it. It isn’t easy I know that but it is your choice and I respect everyones decision whether they read it or not or every now and again or just choose to read face-book or my dads. Its all fine! Anyway this is pretty long again isnt it! Oops! Anyways sorry! Night night xxxx