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.
***********************************************
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
No comments:
Post a Comment