Thursday 31 January 2008

The one with the Bad News....AGAIN!

So I’m still in hospital as most of you know. I had my meeting with Dr. Haynes and its not good news in all honesty. Some of this is lifted from facebook cos I’m tired and there’s not a whole lot to add. Some stuff is different and added in. Thats me last week sometime.....Bald!

The PET scan results showed that the lump was worse than on the last PET I had, it shows the tumour is growing and its spread. I now have lumps in my belly, around my heart, there is lung involvement apparently and it’s also moving to the other side of my chest. So yeh not good. Before it has always just grown back to what it was before, this time its getting bigger.

So where do I go from here??

Well my central line has decided to be a pain in the arse right when I least needed it and has stopped working, nothing is going in and nothing is coming out! So first thing in the morning this one is coming out and a new one going in. Fun stuff but it needs to be done. I’m nervous cos I hate, well any surgical procedure, no matter how small it may seem but I just keep thinking, once its in, it’s in and I can finally start chemo which I know I need!!

Later tomorrow or maybe Saturday I start my Stem Cell Transplant which is essentially 5-6 days of high dose chemo, they put the stem cells back in on like day 7 and then we wait! My counts will drop and I’ll be prone to infection. Side effects include the usual; hair loss (not an issue anymore), sickness and sore mouth etc. Prob be in hospital for another three weeks minimum. I am having what they term ‘half a transplant’ not the full ‘BEAM’ chemo but the E and M drugs used in that, I think that’s because of the wear and tear on my body and I guess they see that as most effective at the moment.

From this comes 3 potential outcomes:

ONE: it gets a sustainable response for at least a few months (12 weeks min but really longer) enough time for me to find a donor and they and me be ready for the Bone Marrow Transplant. For me to have the BMT this stem cell transplant has to do this, it has to provide a sustainable response. Something that my tumour hasn’t done yet!

TWO: it gets a response for longer than before, maybe 4-6 weeks or so but not long enough to get a donor or enough to have the BMT. So I get some relief and feel better for a while but essentially I don’t get the BMT

THREE: it lasts about 2 weeks, same as before, again no BMT.

Dr. Haynes said he doesn’t want to guess, he would suggest logic says stronger chemo means better response but that hasn’t worked on me so far so we don’t know. He has this way of being so honest with you and making you realise how serious it all is without inducing panic which I think is a rare gift! I really get on with him and I trust him 100% that he's doing EVERYTHING to help me so I can't stress that enough. Same goes for the nurses in hospital, EVERYONE is soooo nice. I just wanted to get that across!

If I don’t get the BMT which in all honesty is likely because I need option 1 to work and that’s the most unlikely one, it will then turn to palliative care. Which means we can’t cure it, we just control it, whether that be with chemo, some radiotherapy I don’t yet know. If I get the BMT it has been explained there is no gurantee of that working but obviously we need to get there first!


After the BMT should I get it, I need to be in remission for like 4-6 months for it to work and also in my kind of lymphoma the cells can disguise themselves or something so the new immune system doesnt attack it which is the whole point of the BMT though obviously that doesn't always happen! Sometimes it works! I have to realise though my chances of a cure now are lower than ever. Not negativity - FACT! Its just how it is and I have to deal with that. I am at the moment but they'll be times when I'll find it hard but I'll keep going and I'll keep believing until I'm told otherwise!!

On another note we were told they can’t use radiotherapy as a curative option because the mass is too spread now and the toxic rays would be too much and too risky and could damage my organs meaning my chances of a BMT should I get there are much more limited.

So that’s the situation. Honest as ever, I’ve told you all the facts. I’m ok at the moment, obviously shocked and upset but I don’t think its hit me yet. I think it’s starting too. I feel like I need to cry to release everything but I can’t bring myself too yet. Maybe the tears will come tomorrow. I sort of want them too in a weird way, I think it will help! I feel like I should be reacting more…I dunno!

I’m not positive anymore, you can’t be in this situation really anymore. I’m not negative but I’m realistic. I know what’s happening, I’m not stupid and it’s not possible to keep my chin up and keep positive anymore, I’m done with that now. I’m being upbeat, I’m hoping it’ll work course I am but I’m done with all the crap of ‘just keep thinking positive and you’ll get there and it’ll help’ cos you know what sometimes it don’t! Sometimes it helps to be miserable and sit there and cry!

I saw Alison today too, my Stem Cell nurse who collected my cells last week. She said she had wanted to come see me but wasn't sure how we'd be feeling with all the bad news but like I said I'd rather see familiar faces and people who know me and can chat to me about stuff. It was such a nice visit, I really did appreciate it!


I love all the messages I get, both texts, on my walls on facebook and in my inbox and they do help. You can leave comments on here too I think but I dunno how! Never be afraid to say anything no matter if you think I’ll be offended, I won’t be. I know how hard it is for everyone to know what to say. Hell I wouldn’t know what to say! I’m also in the Aston Times (uni newspaper) this week though obviously the story is a bit outa date now and I don’t know if it’s accessible online or not.

My dad also writes a blog for anyone who wishes to read how we’re all doing and sometimes it’s a different perspective…well it is! You can access that from this link:

http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=237496223

Thanks again and I hope to see some of you soon, if you ever wanna visit notts hospital in the next three weeks or Burton after that just ask and we’ll try and arrange something.

Ooo I just had some oramorph (painkillers) cos my pain in my chest is soooo annoying and it tasted RANK! Lol as long as it takes this pain off I don’t much care!!! Least being here you can get stuff like that ASAP! I think that’s where I’ll leave it for now, I should get some sleep but I’m not ready yet….I wish my hickman line was all in and done!.....this time tomorrow…..just keep thinking!!!

I went on the lifesite chat-room tonight which is like a chat-room for people affected n who have/had lymphoma and it never fails to help….so thanks to anyone who was in there tonight n is reading this cos I’d never cope without all you lot!!

I’ll let you know how tomorrow goes…..:S

Wednesday 30 January 2008

Back in Hospital

So on Saturday after all the panicking on Friday I was justified so I was back in hospital and kept overnight. I had a CT scan which showed the mass is bigger and growing again which I had kinda gathered seeing as I couldn’t breathe properly, my cough was back and so was my swelling. I was given steroids which are ok and keep my symptoms down to a certain extent but they wont hold it forever. They also make you really high or they can do but they also make you really low which I’ve experienced more than the high if I’m honest. So anyway Dr. Haynes has been off due to family circumstances so I’ve been dealing with Dr. Macmillan, an apt name for a cancer consultant I thought. Anyway I had a cannula for the CT scan but with no problems, my line isn’t working, letting stuff in or out which is worrying but they are going to speak to Dr. Haynes about it tomorrow (Thursday) when we are assured he will be back and come and speak to us.

They also have the Pet scan results I believe so we should know more. I’m very nervous about what they are going to say. It could be a big day, well chances are it will be. I’m back on the ‘bellly injections’ which thin my blood and help the mass pressing on my main arteries, as painful as they are I am grateful for them at the min cos least I know they are helping. And the nurses that do them understand. I have no complainst about the nurses, they are all fantasic and so are all the ward doctors and consultants. The good news is still that I have stem cells which means they have options, bad news is GEMP didn’t work essentially. Well I guess it did, it just didn’t sustain it for long enough.
Oh I had my heart scan and nothing has comeback from it so I think its all ok and my heart rate seems stable right now so I’m praying it stays that way. My problem is my tumour is growing so quickly now, they need to act fast so I think we will deffo see someone tomorrow esp as my steroids are now at an end. I also have to have my blood sugar levels checked cos steroids increase them which mine have. Its fun, they prick your finger to make it bleed and then put the blood on this little machine to check it, it always looked really painful but it really isnt!

My line is worrying me but I guess I’ll know more about that tomorrow. I am in a little room with me and one other lady in it who is nice enough but not very chatty. I enjoy having mum and dad here and bex when she was around. And Gemma coming to visit today was great, I really enjoyed it. I think Claire and my nan’s are coming over the weekend as well so that will be good too. I watched the bill tonight too which was good! Least some TV is alright!

My ‘Steroid Appetite’ is well and truly back, I’m loving yogurts, ham sandwiches and Maltesers especially at the moment! I’ve been doing those Killer Sudoku’s which are really good for killing time but keep frustrating me as I’m so crap at it. I feel ok emotionally, rollercoastery! (if that’s even a word), I can be soooo down but the next min feel ok so its literally a case of taking each minute at a time! I’ve cried a bit but the last 2 days haven’t been too bad. My PET scan was boring as anything but least it split the day up!! And I’ve been getting dressed in the day so I feel a bit more normal too. I’d love some hours at home though with a proper meal and some sky football though with that Liverpool score I’ve just seen maybe a lack of footie isn’t a bad thing! Think I will stay up for match of the day anyway though. I need to wait for my cough medicine till half eleven. Fun stuff.

My routine consists of being woke up at 6am for obs (blood pressure, sats and temp) then sleeping till 8am which is breakfast, waking up for that, having tablets and bed changed. Then I watch some TV or do a puzzle till Mum and dad come. I watched Jeremy Kyle today which was pretty entertaining. The rest of the day is spent waiting for food, eating, checking the net now, sleeping and waiting for consultants. All in all pretty boring. Gosh that depresses me writing it! Maybe I should stop! Tomorrow I hope to access lifesite so I can chat to people.

And here’s to the meeting with Dr. Haynes….scary stuff……

Friday 25 January 2008

Feeling low

I feel really crappy now, I don’t know why. I should be happy cos of yesterday but I just feel really low. My cough has got worse and I’m pretty sure I can feel the suffocating feeling I get when the lymphoma is coming back. I’m just paranoid its coming back, I’ve got pain in my chest too which is another symptom. I’m hot and sweaty and I have a headache. Getting up the stairs is harder today than yesterday. I really thought GEMP might do something but maybe it’s just gonna be like all the others, it does something but then it just grows back too quickly….how r they ever gonna get rid of it? I’m beginning to wonder. I've felt ok all day, nans been here and everything so why am I feeling so crappy now. and becky is coming so i feel bad for feeling crap. I want to put on my 'Happy face' but I really don't know if i can. I wish i cud just turn my emotions off. or forget for one day...just one bloody day. One bloody hour.

Sorry I’m being all negative but sometimes I can’t help it. I know my own symptoms now and unfortunately that means I know when its most likely growing and no matter how hard I try to convince myself its ‘energy levels’ deep down I know its probably not that. It’s the lymphoma coming back. I just hope the symptoms don’t get worse before I get any more treatment. If they do get worse I will ring the hospital and they will probs give me some steroids to tide me over. But I hope the GEMP can hold it a little bit, I hope my symptoms don’t get worse. After the high of yesterday I want a nice break from hospital and feeling shit, I want a nice break and feel half normal. I never feel totally normal cos I can't do anything much than walk round the house but you know what I mean. I felt fine all day, i don't know whats suddenly bought this all on.

I had a message on facebook on one of my photos, the one of me on the stem cell machine and it said ‘what on earth is that machine’ I wasn’t impressed, for one the caption explained it all and my group explains why I was on it. I’d been on the thing for 4 hours one day and 5 the other day and had been through a rollercoaster ride of emotions cos of it and someone making such light of it in that insensitive way really bugged me. Maybe its just me. I replied rather blunty explaining but the person didn’t take the hint and continued to ask questions after I’d said everything was fully explained in my group which he then said he didn’t understand. It really gets me that people are so insensitive, i wish he would just READ THE GROUP!!! Its what its there for, I don’t care if he is reading this because it really irritated me. It was an insensitive way of asking what it was and I really don’t even know him that well, if it was a close friend I don’t think I would have minded so much but I really hardly know them. AHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!sorry just frustration.

I’ll probs feel better tomorrow, these moods don’t usually last too long and Becky is coming home which is really good so I want to enjoy that. But she’s had problems with the trains and had to pay 64 quid cos the tickets she prebooked weren’t there and they had no record. And she was upset and i feel bad cos shes only coming bk cos of how I am and its just…………ohhhh I’m just on a downer and being stupid. I'll probably be fine tomorrow. I will be.

My hair is growing back and I have like a skinhead! That’s a positive.
I had a message from an old burton albion footballer on facebook which realy cheered me up and it was nice to hear how he was getting on in NZ and to know he'd seen what had happened and taken the time to say something. and all the messages from friends have been great.
I’m going now cos I’m fed up.
xx

Thursday 24 January 2008

2 milllion Stem Cells!

Well, its been an eventful coupla days. We got the stem cells collected on Tuesday and I thought ‘yey great’ this is really good. Got there on Wednesday and my line worked, thank goodness which was a huge relief but it did take us an hour and a half to get to hospital! They left ‘Billy Blood drop’ out to greet me on Wednesday morning too! Thats him there.

Anyway after a while Jo, the nurse came in and said that unfortunetley they had only collected 500,000 cells. They needed 2 million and I was predicted to get that in one sitting on the Tuesday or just under but I’d only produced 25% of what they thought. They said Dr. Haynes had been told and that I would stay on the machine for today but there was no point after that and unfortunetley we’d have to look at other options.

So I was absolutely gutted and deflated. I got home and went straight to bed, I just kept thinking, nothing ever goes right for us, when are we going to get some good news. I felt so low and fed up and I did at the hospital too, it was horrible sitting there knowing it was probably for nothing. and the fact that I'd had the needle the day before and was so proud of myself for doing that and getting through it and now it seemed as though it was all for nothing. I went straight to bed like I said. It was only about half 3 but when I'm feeling low all I do is sleep cos then I don't have to think about stuff and it goes away for a few hours....unless I dream about it of course! I sleep alot cos im shattered as well, not always cos I feel like shit! But the two tend to tie in together.

Anyway I got in and went to sleep. About half five dad came in and told me the hospital had rung, with that days collection and the few they got on Tuesday I had managed to produce the required 2 million cells! I have to say I didn’t feel instant delight, my emotions had been played with too much for that, I was mentally exhausted but today I do feel very good about it and I realise how important it is! They can now do a stem cell transplant to hold it until a donor can be found so finally we’ve been given some positive news!! FINALLY!

So that’s all good anyhow. Feel better today emotionally though still a bit on edge but better than I have been. I’m tired still and my breathing isn’t great which is slightly worrying but I’m hoping its down to energy levels rather than the lymphoma pushing on something. I can never really tell. I ache a lot as well, in my back, could be GCSF or could just be random aches. I have like so little energy its hard to tell what is causing what. I hope the GEMP holds the lymphoma till they either do another lot or do whatever they are doing next. I think the most realistic outcome of the PET scan will be that its shrunk it down but not by a great deal, it will prob have grown back a bit. Just hope its not starting already!

That’s not me being negative but realistic and its what the doctors think as well. My PET Scan is Tuesday and my appointment with Dr. Haynes a week after on the Wednesday. Apparently he was thrilled that they had got stem cells as they haven’t done it from GEMP at Nottingham before so I’m a guinea pig!


My taste buds are going all funky again, cant find a drink of squash that I like the flavour of, think summer fruits is the best of a bad bunch. And everytime I take big gulps my stomach feels queasy. Its horrible!

But honestly I do feel a lot better today, sat on my computer all day really and done nothing, well except go on facebook! And now I’m on lifesite which always makes me feel better.

I read a story in Take a break today about someone I know through the Internet who had what I have but hasn't had the complications I have had. They have had RCHOP and are awaiting scan results to see if it has worked. There is no reason to think it hasn't. Their halfway scan showed good progress. The article in theory is a great idea to rasie awareness and everything but it made me feel a bit weird reading it, this lady is lovely and if she's reading this I dont want to offend her or anything cos I'm not her and I dont know how she feels but i just thought the article was very negative and a bit dramatic which probably sounds harsh but when I think to all the complications I have gone through having RCHOP wasn't that bad. I'm not saying it was nice but she was talking about dying and about how if she relapsed there wasnt much more that could be done which isn't true - i'm living proof of that! They can offer radiotherapy, stronger chemo, Stem cell transplants, other treatments, there's loads more options and she had planned her 'last days' and thought about her funeral which when I was on RCHOP I never thought about, it has a 85%+ rate of success and her tumour at the midway stage was shrinking so why should that have stopped?! I just found it a bit strange reading it and maybe i'm being really harsh but i just thought if someone who has just been diagnosed is reading this they would be devastated! I just hope the next part is more positive and uplifting cos from speaking to her I know she is a positive person so I was a bit confused. She has a great chance of a cure. I'm not dramatising my story but my odds are 30% compared to her 90% and I just feel that at those odds, thinking about your funeral isn't the best option! I'd love to be in her position, that sounds strange but I mean in terms of treatment being straightforward and working. I just know I never thought about death or planned my funeral when I was at that stage but hey maybe thats just me....maybe I shouldn't have written this but I have now so whatever....I hope I dont casue offence. Sorry to the person whose article it is, if your reading this and I have. Maybe its just me being a bit selfish and over pitying of my situation, everyone feels differently I guess.
Anyway I’m now going to leave this here for today.

xx

Tuesday 22 January 2008

Numbing Cream.....a new revelation!

Well its been a verrrrrry long day! Left here at 8.15 and got to Notts at 9.20, arrived home tonight about half 6 – 7 o clock. We thought it was just gonna be a simple blood test today and checking counts but turns out my white cell count was 22 and they start checking for stem cells when its above 1! So mine was well high enough. Anyway I was producing stem cells and they put me on the machine! It was all connected through my line and off we went. Thats me on the machine.

However every few minutes it was ‘pinging’ and basically my line wasn’t bleeding enough and at a fast enough rate. After a coupla of hours we had to say ok it’s not happening and the possibility of a needle was talked about. You know my fear about needles!! But I agreed to let them try and they put this numbing cream on my arms and I have to say it was the least painful needle I’ve ever had though according to my dad it was probably the biggest! Anyway once it was in things went really smoothly and I circulated the 12, 000 litres required. Although I did finish a little later than planned! I was on the thing for like 5 and a half hours as opposed to the usual 4!!

I didn’t feel too crappy today sat in hospital, I did when I woke up cos I was so tired but once I was there I just sort of got on with it today! I was given this little cuddly toy blood drop to squeeze to help my veins, it was called Billy blood drop! Lol, and I watched Pretty Woman on the dvd player they gave me so it wasn’t all bad! Thats my lovely needle! not nice is it!!

I was pretty proud of myself with the needle, I just hope if I need one tomorrow it goes as smoothly! Or even better my line works!!! Please please please!!!!

All the nurses were really nice as usual and I spoke to Faith about my heart thing, they aren’t too worried but they are giving me a scan on Monday to double check everything. They think it was probably a reaction to the blood so that’s ok. Feel a little better about it now and I asked all my questions. I didn’t get to see the psychologist today as I had to stay in Notts but we are making a new appointment.

I’m gonna get an early night tonight cos I am shattered and hopefully everything will go ok tomorrow but its really good they’ve made a start on getting stem cells so yey me!!

xx

Monday 21 January 2008

GCSF Kicks in.....

I've not posted much recently becasue I've just been too tired. I'm literally waking up at lunctime, having dinner, sleeping again in the afternoon, waking up fo a few hours and going to bed around half 8 - 9. I think Thursday has just taken it out of me completly, mentally and physically. My GCSF injections are 5 days in now and I'm feeling the pain! The aches are back but really thats a good sign as it means I'm more likely to be producing stem cells. We'll know more about that tomorrow when I go into Nottingham for bloods and also my Lymphoma Nurse, Faith, is going to come and talk to us about the heart issues and everything that happened last Thursday. So I'm hoping I'll feel better after that. I like Faith, she seems really nice and I'm sure she'll be able to allay some of my fears.

I feel a little better today though still very tired. And not as positive as I have been but I'm better than the last few days. Tonight has been good, we've watched football with my nan and tried to teach her how to use her mobile which is pretty entertaining in itself!

Liverpool didn't win unfortunetley, not happy with the club really, the owners or the manager! But hey at 2-1 down I would have taken 2-2, though 4 draws in a row in the league isn't good.

Anyway, I'm tired again now so I'll write more tomorrow, I'm seeing the psychologist tomorrow too so that should help things. I feel ok, but just a bit 'on the edge,' like anything could trigger me off on a negative spiral but I've been talking to people on msn tonight and I feel ok so thats an improvement! Just wish I could stay awake for longer than a few hours!!

XX

Saturday 19 January 2008

Trip to A&E

Well I didn’t write yesterday because I was too exhausted. After I wrote on Thursday night I went onto the lifesite chatroom and was chatting away on there when my heart rate suddenly went up. I could feel my heart racing, like it was jumping out my chest. We rang Notttingham at first and they said they would call back with advice but I got worse and so we ended up calling 999. I felt hot and dizzy and clammy as well. I was terrified.

Anyway the ambulance came and checked my heart rate which peaked at 280, a normal person’s is between 80 – 100! Mine is usually about 120. Anyway they wanted to take me in straight away and so we did, blue lights and everything. Scary.
Once at hospital we were put in a cubicle and they did an ECG and took bloods from me. Though they did use my line which was good.

Then mum and dad were allowed through. I was kept hooked up to the heart monitor. The first thing they did was get me to blow through a syringe but that didn’t work and apparently never does so why they try it I don’t know. I was pretty worked up by this point and upset and scared about what was happening. Then they said they would have to give me a drug to stop my heart momentarily and then restart it again, it was perfectly safe but I would need a cannula in my arm as they didn’t want to use my line cos of infection.

When they told me this my heart rate shot up even more. I hate cannulas, I’m terrified of them, they are just needles into your arm which then they can inject stuff into but I’ve had bad experiences with them and not having them very often kinda makes it worse now. Anyway they put it in, into the my vein in arm where they take blood from so not the most comfortable of places but the doc was good and it worked first time. Thank goodness cos I was so worked up about it, if it had gone wrong they would have needed to sedate me I think!

I was given the drug in the resus room as there are better monitors in there and you can momentarily black out from it. When it went in I got a bad pain in my chest and went all hot and dizzy which they did warn me about. The first dose only worked momentarily so they gave me a higher one which kept it down to about 130ish. They decided to keep me in overnight but there was no beds so I had to stay in a and e in a cubicle but they did find me a proper bed rather than a trolley thing. I didn’t sleep much though and id been up from 7am the previous morning. Mum and dad left at 3am so it was a long night. I hate all the waiting around they make you do in there.

At 5am I woke up with a temperature and they wanted me to have a chest x-ray so I was wheeled off to have that about 5.15am. I finally got a coupla of broken hours sleep before 8.30am when mum and dad came back with the Burton hematology team who know me and my condition unlike the a and e doctors.
They said I cud go home. They don’t know what caused it, maybe a reaction to the blood or previous chemos...but I’m in Nottingham on Tuesday and they are aware of the situation, they will probably do a scan of my heart to check everything is ok.
I’m now just mentally and physically exhausted. I’ve slept all day yesterday and all last night and the best part of this morning. I’m so tired. Its things like this that give you a reality check, I’ve been so well for 2 weeks you’d almost forget I was ill but then something like this happens and it brings it all home. It makes me want to give up at time, it really does, sat in a and e I just thought, I can’t take any more of this, what else will go wrong, how am I supposed to deal with everything that keeps happening?! I know I will carry on and I won’t give up but it really does make you wonder at times. I feel quite low at the moment cos of everything that’s happened in the last 2 days or so but I guess I’ll pick up again soon. I bloody hope so anyway. I’m exhausted which isn’t helping matters.

I’m also terrified it’s going to happen again and I can’t help that though I’m trying to relax and not let it worry me. I’ll feel better on Tuesday when I’ve spoken to my own doctors. That’s the problem with A&E, they can treat the immediate problem which is great but they don’t understand the background or anything about my condition! And it’s so frustrating that they don’t know me! I just don’t have any trust in them at all really. I had to talk the doctor through how to take blood from my line and how to clamp it and everything! Reassuring?! Not. I just don’t have the trust in them that I do in the hematology team. When Dr. Ahmed came on Friday morning I had complete faith in what he was telling me! Cos he knows me and he understands what’s really wrong with me. All the staff in A&E are nice don’t get me wrong I just don’t trust them totally!

Anyway I’m signing off here for tonight, I’m still soooo tired. I saw my nan’s yesterday but ended up going to bed while they were here, I managed to stay awake for my cousins today and them being here took my mind off everything which was good but I’m tired again now….so night night xxx

Thursday 17 January 2008

The Longest Day EVER

So I spent the whole day today at hospital. I didn’t sleep well last night at all and kept waking up every few hours even though I was shattered! It happens sometimes, I dunno why, sometimes I’m not even thinking about stuff to do with the cancer but I get random stupid thoughts going round in my head, like about something I’ve watched on tele or something. But anyway I had to be up at 7am to get ready to go to hospital. We left at 8am and 11 hours later we came home! 7pm tonight!

It was such a BORING day. I hate it. We had to wait 2 hours before they even started the bloods cos they weren’t ready for me, then it takes 2 and a half hours per bag and I had 2 bags, then I had to have my injection, my dressing done and an xray so it was 6 by the time we left and 7 when we got in. I did watch a film which killed some time but I was constantly clock watching. And I find I can’t eat properly when I’m in there, its stupid!

The staff are so nice though and all the nurses make you feel welcome and sort everything out for you. We have one nurse in particular at the min called Alison who is really great, she sorts out everything and if something goes slightly wrong she spends ages apologising! It’s not even her fault! Just one of those things like the blood not being ready and stuff. It just gets depressing when your one of the first ones in but the last one out! I read some of my magazine and chatted to mum as well and I tried to sleep but failed. Hopefully that means I’ll sleep tonight. I bloody hope so. I hate not sleeping.

Me and mum chatted for a bit today about what happens if the treatment doesn’t work and stuff and we said its hard for people to contemplate that. But like we said if it happened we’d adjust and we’d deal with it and its something I will discuss with the psychologist, we’ve already mentioned it once. I think its hard for other people to understand though and try to get their heads round it, well it would be wouldn’t it! I think its better to talk about it though than pretend its might not ever happen cos one day it might, I’m not stupid, I know the odds are against me but you have to believe that you’re going to be in that small percentage that do make it through!

I’m sooo tired tonight, I hope this blood kicks in tomorrow and gives me some more energy! Both my nan’s are visiting which will be nice and then on Saturday my cousins are coming. Dad picked up the new car today which is very nice I have to say.

Anyway I’m too tired to write anymore so I’m going to leave it there for now….

Wednesday 16 January 2008

Wishing they would put decent games on TV

So now I’m writing a normal blog. Hopefully I’ll update everyday but obviously there’ll be times when I won’t be bothered or if I’m in hospital though I'll try keep a diary and update when I can.

I’m watching football at the min and its pretty shit! All the other games seem to have goals, just not the one they are showing on BBC! I’ve got to have a blood transfusion tomorrow and I’m not really looking forward to another long day in hospital with no internet and nothing much to do. I can’t focus on a book so I’m limited to DVD’s and listening to music. I could sleep I guess….

Although then I wouldn’t sleep at night. I feel pretty tired right now actually, probably a combination of a sleep deprived night in hospital and the blood counts being low. Might have an x-ray tomorrow too. And of course my first GCSF injection, that’ll be fun…To be fair the actual injection is ok, it’s the side effects I hate, all the aching and stuff!


I talked to Prina on the phone tonight which was nice, I lived with Prina in first year and its been a while since we talked so it was good. Sometimes I’m more in the mood to talk than others and today I was so it was all ok. Its just sometimes I can’t be bothered to go through everything but tonight I was in a talking mood so it worked out well! Everyone always say I cope really well and they wouldn't cope with it like I have but I think you do, i think when your faced with something like this you just get on with it and you have to take each day or bit at a time. I don't think about coping, believe me I have my bad days. It's strange, I don't know how I've coped really, I dunno if I have really!

I’ve done nothing today except write the updates for this blog, I feel like I’ve relived the last 6 months! Lol. Its crazy really what’s happened and at the minute there is no end….I have no idea when or if I’ll get fully better and if I do when it’ll be, in a year, 2 years, 6 or 7 months? It’s just a total unknown but if I think about that too much I’ll go crazy myself so I won’t! I just have to try and take each day as it comes, hard as that is sometimes.

Sarah and Hannah and Carol might come on Saturday so that’ll be good and both the Nans are coming on Friday all being well so that will also be alright, though hard work I’m sure explaining everything to them! Sarah, Hannah and Carol won’t be hard work, I know that! It’s just my Nans that need the constant reassurance and the knowledge of what’s happening.

My mum reckons my hair is growing back too! I know my eyebrows are! I ordered some more buffs today which is cool, I live in those at the moment. Well Havant are through to the next round of the FA cup and play my team, Liverpool! What a tie that is for Havant though, awesome result for them! It's great really! And Newcastle are 4-0 up! Amazing what the annoucement of a new manager will do for you! City - West Ham remains the most boring game ever though at least we've had a goal now! 3 minutes left to endure.....ooo a fight now! Well kinda...no cards though :(

Anyway I’m feeling really tired so I’m going to leave it there for today….. I might take my laptop to hospital tomorrow and write this on word and then just post it when I get home or something.....give me something to do! Oh and the game has finished, 1-0 to City - Boring game.
Night x

My Friends and Family

I have had fantastic support from everyone, my family and all my friends, right from the start and I’ve enjoyed the visits from everyone and the messages I’ve had have been great. It really helps to keep my spirits up especially when I’m feeling low. I know it must be hard for my friends sometimes to know what to say and to know how to deal with this but apart from saying ‘keep positive’ which I don’t like there’s nothing that will offend me if its said with the right intentions which everything always is. Last Saturday Hammad came to see me and I really enjoyed the whole day and catching up on everything, it really lifted my spirits which visits from friends always do!

I’ve had visits from lots of other people as well, most recently, Dan, Phil, Rachel, Dave, Sooty and like I said, Hammad last Saturday. I’ve also had visits from Abby and Laura from Burton. I’ve really enjoyed seeing everyone and it’s been good to catch up on everything.

I think its harder for some people to talk to me about what’s wrong with me and to say the word cancer but I’m never going to say ‘shut up I don’t want to talk about it’ I will always answer questions and be happy to discuss things cos I know I’d want to know if it was the other way round.

I do talk to people who suffer with the same thing as me and people who have recovered from it. The life-site chat room is somewhere I find really useful and always come out feeling more positive than when I went in. It’s a place that people with all kinds of lymphomas can go and chat to each other and I’ve made some good friends. I also talk to a psychologist regualarly which helps alot.


My family have been really supportive, my mum, dad and sister especially and I find it easy to talk to them about everything. They have done everything for me the last few months and I can’t thank them enough. My grandparents the same really though I sometimes find them more difficult to deal with as one is really overly optimist and unrealistic at times whereas the other is the opposite and is very pessimistic! It’s hard to find the balance!

Anyway that brings me totally up to date and from now on this will be a normal blog…..

Fertility and Chemotherapy

When I first started chemotherapy I was told my ability to have children could be affected but that it was a maybe. I didn't think too much about it. I was too worried about me!! Since then I’ve had more intensive chemo which is very likely to have destroyed my chances of having children, if I get the bone marrow transplant that will almost certainly mean I will never be a mum. Well not in the natural way anyway! Even if i just had the Stem Cell Transplant it will almost certainly destroy any chances of me having children as well.

It’s something I wanted to put on here but I haven’t given it too much thought. It’s a huge deal and it’s upsetting and sometimes you think ‘one day when I have kids’ but then I realize ‘oh actually…’ and that’s when it hits you, how much this cancer changes your life. I haven’t thought about it too much because I have to get me right first before I can think about that!

Maybe I’ll be able to adopt or foster, that’s how I look at it, in a positive way but it is sad that I’ll probably never have children of my own. I guess it’s a price I will have to pay but if I can get right then I will be ok with that.


I had the option of freezing my eggs but it was too risky to delay treatment and unless you freeze embryos, the chances of getting a result are minimal. Its much easier if you have a partner or if you’re a guy! Lol but it wasn’t to be I guess….
When I was at the football I saw this little baby and I thought ‘ahhh bless’ and it kinda hit me then too…but I guess it will every now and again…it’s just how it is now.


Anyway that’s all I wanted to say on that really….I’ve just never really spoke about it before so….

Further Treatment Options....

Anyway while we were in hospital we saw Dr. Haynes, my consultant. He said the delay in treatment wouldn't have caused any lasting effects and the returning symptoms could be due to a number of things and he didn’t seem too worried. In fact after today’s phone call saying I need a blood transfusion tomorrow I think it was probably more due to my counts being low than the lymphoma which is a relief!

He explained there are now 3 scenarios arising from the GEM-P treatment:

1. It has worked really well and shrunk the tumor down a lot

2. It has partially worked and has shrunk it down a reasonable amount

3. It hasn't worked at all

Out of the 3 option 2 is the most likely, option one isn't that likely and option 3, although a possibility due to how well I've been feeling is unlikely too.They plan to give me at least another cycle of this GEMP chemo, possibility 2 more. But this will happen after they have attempted to get stem cells. After the second cycle they will do a PET scan to access the situation.

Now there are 4 options available from these 3 scenarios.

1. GEMP has worked well. They manage to get stem cells form this cycle. They will then give me the 2 more and these 3 cycles together manage to shrink the tumor right down, enough to hold the disease until they can get a donor and do the bone marrow transplant.

2. The GEMP cycles work partially, shrinking down the tumor to a reasonable size. They successfully get stem cells after the first cycle. They then use these stem cells in order to give me a stem cell transplant (so high dose chemo then put stem cells back into me) to hold the disease until a donor is found and ready and I am also ready for the Bone marrow transplant.

3. The GEMP cycle works partially and shrinks down the tumor to a reasonable size but the disease starts growing back - and they CAN’T get stem cells. In this scenario they abandon the stem cell option and instead would give me ‘mini-beam’ which is a type of intensive chemo- if the chemo they give you in stem cell transplant is 10/10, this is 9.5/10 BUT although it would wreck my stem cells so they wouldn’t be able to collect them you don’t need to put stem cells back in me to recover from this. So essentially its just really strong chemo! And this would hopefully again hold the disease until the donor and I am ready for a BMT.

4. The GEMP doesn’t really work that well and/or they try the mini -beam or the SCT and neither of those are very successful they would give me Radiotherapy but this is a last resort due to the risk of further cancers in the future and the damage it could cause to my organs later in life because of where my tumor is! Again the idea is to hold it until I can get a BMT

So they are now the 4 options, all leading hopefully to a bone marrow transplant. Obviously things need to start going to plan to get there! Options 2 and 3 are the more likely. Option one isn't very likely and although option 4 could happen they want to try and avoid it! They are going to do a chest x-ray soon as well, maybe tomorrow or Friday just to see if there is any change but they said if there isn’t not too worry too much cos it could have shrunk in the inside or something not from the outside. The doctor agreed it must be doing something to make me feel so well!!

That’s the situation as it stands at the moment anyway…..there’s just a couple of posts left until I’m up to date totally…

The plan for the next few weeks....

About a week or so ago we found out Becky wasn’t a match for the Bone Marrow Transplant. This means I will now go to the register to find a match. There is a good chance we will find someone though.
The staff at Nottingham have generally been fantastic, we were given some bad advice regarding temperature one night but we think it was a young SHO who wasn’t clear on the protocol and it has since been sorted anyhow. I had a temperature last Thursday but it was a minor scare and I was fine the next day.


Now I have had my first cycle of GEM-P they want to collect stem cells.Basically stem cells are the building blocks of your blood cells, they can turn into red cells or white cells or platelets - whatever you need, so if you cut yourself your stem cells form platelets to replace the ones you lose (i think its platelets anyhow if memeory serves me right!). They want to collect my stem cells in order to allow them to give me high dose chemotherapy which would blast the tumour but the chemo would destory all my stem cells so after they've given it they then return my stem cells to me and they help my system to recover and get back to normal though it takes a few weeks or so. You are also at risk of infection during this time.

However they haven't ever collected stem cells off the back of this GEMP chemo I’m having. They know it has been done and there has been success with it but they haven’t got any detailed literature on it. they have been ringing london hospitals inc the Marsden one (they tried ringing the day it was on fire apparently!) to try and find out at what stage my body would start making stem cells after this chemo has finished but they haven’t been able to find out much. So basically we play blind! Obviously they can base decisions on other regimes that they collect stem cells from and they have a rough idea but really its guesswork. They are hopeful they will be able to get stem cells, they see no reason why not.

So now I will go back and forth to Nottingham 2 or 3 times a week to have bloods done, they will then decide from these results what to do at each stage. I go in tomorrow for a blood transfusion as my counts have dropped and they will start checking things from then. I will also start on GCSF injections tomorrow all being well. They are just small injections into the stomach every day for about a week. They stimulate your bone marrow to make white cells which when they go up I should make stem cells too - that’s the hope anyway, as my white count goes up my body starts producing stem cells. If my white count goes up but I am not producing stem cells that’s when they will have to say ‘well actually this isn’t going to work and will look at other options but because I have had pain with GCSF injections in the past they say that is a good sign as patients who get pain (its horrible i tell u - aching and flu like symptoms but hey small price to pay and I can take codeine to ease pain) usually produce plenty of stem cells so that’s a good sign!When my counts are high enough (white count has to be above 1 I think) they will test to see if there are any stem cells in my blood stream (just a normal blood sample from my line) and once they find some then they connect me up to this fancy looking machine.

I am on it for about 4 hours and it basically circulates your blood round twice and takes the stem cells out of it n puts the rest back in. The main thing is that its boring! they said they don’t know how many times I will go on the machine, depends how many stem cells they get the first time, if its not enough I go back on and so on until they have enough. I been told they can use my line to connect it and everything so that’s cool.The stem cell transplant will essentially be a holding thing until I can get the bone marrow transplant but potentially it could hold it for some time so if they can do it it will be a very positive sign. By collecting my stem cells it will enable them to give me much stronger chemo which obviously will stand more chance of getting rid of the tumor.

So that brings us up to date with the plan for the next few weeks, when I was in hospital I saw Dr. Haynes again and he explained what would happen after this so that is in the next post….

GEM-P Chemotherapy

So I started my GEMP chemotherapy just after Christmas. It’s a 2 week cycle and the last part is as an inpatient. I had minimal side effects, no sickness, some dry and sore skin on my hands and some flu like symptoms after the second lot of Gemcitabine. The last few weeks have been good in fact. This chemo has made me feel better than I have done in a long long time. I managed to go shopping round Derby on New years Day, although I was in a wheelchair it was great to get out. Thats my drip when in hospital!

I also managed to go to a football game at Burton Albion, also in a wheelchair, that wasn’t as great. I liked the game and we were treated great by the club but I didn’t enjoy seeing people I knew and being in a wheelchair, it felt weird and not everyone treats you normally, some people did but not everyone and I felt strange. I won’t be doing it again until I can stand up or sit down in the crowd normally. Thats me the other day.

However a week later I was out of the wheelchair and am no longer using it, I could walk around quite well for me and managed a walk to the shop though it did tire me out!
Chemo days aren’t great, they are boring and I always get a bit down being in there but everyone is nice and friendly and you just have to get through it.
Last Friday I was meant to have Day 15 but they couldn’t find me a bed so it was delayed until Monday. Monday was a shit day. We were waiting all day for a bed, I felt ill, in terms of my breathing had gone downhill and I had the mother of all headaches! I was paranoid my symtpoms were coming back and I was very scared. Any detioration seems big now because I’ve ben so well!

Anyway 4 o clock on Monday we got to Nottingham and into my room. We were waiting for 2 hours before a nurse came and I finally got some pain relief for my headache. Once I'd been booked in and the doctor had come (about 9.30ish) then they wanted me to have an ECG as my heart was racing which I tried telling them it always does but they wanted to check. Anyway it came back fine. I finally started my chemo about 11pm after arriving at 4 n waiting all day. I had a one hour bag of Gemcitabine (chemo) followed by a 3 hour bag of fluids, followed by another hour long bag of stuff that I can't remember the name of but it made me want to go to the toilet anyway! Anyway that bought us to about 4am and then i had the Cisplatin (chemo drug) for 4 hours followed by 12 hours (yes 12 HOURS) worth of fluids. I finally left hospital at about half 9 last night getting home at half 10 just in time to watch Match of the day and crash out in bed. I had virtually no sleep in hospital cos they kept coming in and changing the bags of stuff over, plus I had to keep going toilet with all the damn fluids they were putting in me!! That pic is my mum in hospital!

I watched Green Street and High School Musical 2 with mum and dad and it was a long day but we got through in the end!!

That’s pretty much everything up to date, though there are a few more posts which will explain the plan for now on and some random stuff I wanna chat about before I start my proper blog…

Boxing Day and New Years....not the best...

On Boxing day me and Becky sat downstairs playing on our computers when we were told that our Granddad, who I mentioned previously had been ill for some time had been taken into hospital and had died. His breathing problems had essentially got too much and they couldn’t save him. My mum went to the hospital with my dad, my Nan and her sister and brother (my aunty and uncle). Thats my nan and granddad during Christmas 2006, a year ago.

It was an awful thing to happen but not totally unexpected in some ways. It was hard for me to deal with, I couldn’t think about it with everything else that was going on and I shut it to the back of my mind and tried my hardest not to think about it until the day of the funeral…2 weeks later. I did sometimes think about it and I miss my Granddad a lot, I’ve become close to him in the last few years especially since I started uni and he used to enjoy looking at my photos and hearing stories of what we’d all been up too. I was also sad for my nan as she was now totally alone though we see much more of her now, as she was always constantly caring for my Granddad before.

The funeral was hard and I cried, a lot. I was able to go though thankfully and I was also able to go afterwards to my aunties house once a lot of people had left as I was prone to infection that week so we waited until the majority of people had gone. I talked to the psychologist about it and that helped. But I still feel in a way I havent; dealt with it yet but I can’t properly even now because one negative thought leads to more and I can’t let myself go down that road.

Of course I think about my granddad but I can’t let myself properly freely think about it because its too hard. That’s probably cowardly and sounds silly but it’s my way of dealing with it right now and its how I’ve dealt with it up to now. One day I’ll let myself think about it and about him and about everything but now isn’t that time. I think my mum is ok, I think she found it hard obviously but things are pretty much as normal as you get in our house at the minute, I know she finds it hard but I think we’re all ok.
New Years was also difficult, my Nan was here which was nice but at the same time you can’t help thinking again ‘where will we be next year’ and all the stupid chain texts you get didn’t help me feel better to be honest. My new year wasn’t great and I was petrified about what 2008 might bring, not particularly looking forward to it to be honest! And reflecting on 2007 wasn’t really what I wanted either especially the last 6 months! I had a few nice, personal texts that I was fine with but to be honest it wasn’t the greatest New Year. I had no choice but to stay in and watch TV, I couldn’t go out and get drunk or anything so it was pretty boring. It was nice spending it with the family but it was still quite hard to get through. And the days after when everyone asks how it was….what do you say…?

So that was my Christmas and New year….not the greatest I’ve had I have to say….

Meeting Dr. Haynes

This is virtually lifted from my face book site but it explains it the best so I may as well use it! That is me on Christmas Day, before the Steriods took hold and made me fat!

My tumor is a sizeable one, I’ve always known that, football sized they told us to start with and all the chemo so far had failed. Dr. Haynes reiterated this to us on Christmas Eve 2007. He said he was worried. 80% of people respond to RCHOP, 85% of people respond to IVE if they don’t respond to RCHOP. I had responded to neither. The 5 year survival rate for people who responded to RCHOP was 90%+, for those that didn’t, that survival rate dropped, essentially my chance of a cure, dropped down to 20%, this went up to 30% if I could get a Bone Marrow Transplant (BMT). Not good odds. Thats me and Becky on Christmas Day.


When I met with Dr. Haynes my symptoms were all back. He gave me some high dose steroids (20 tablets a day plus all my others!) to get me through Christmas as I didn’t want to start treatment during Christmas and he agreed that it would be good to spend Christmas at home. Nottingham is one of the best Lymphoma centers in the country and the staff and consultants are second to none.

The doctor said, he works on everyone elses difficult cases and mine was a difficult one in comparison to them. He was pleased at how together I was and how I took the news but to be honest I think I was just in shock! He gave the NHL a very specific name, one that’s more prevalent in women than men and also in people under 40 but the name itself passed us by in all the info!
Next he explained the plan from then on….it was to start on GEMP, new drugs, new regime. I would have the Gemcitabine the following Friday as an outpatient, the same the Friday after that and on Day 15 I would have the Gemcitabine followed by the Cisplatin along with a lot of fluids and I would need to stay in hospital overnight for this part. I also had steroids as part of this regime and they kept my awake a lot and coming off them can be annoying as you can get mood swings. We were told this regime on me had a 50% chance of working. I also had a blood transfusion with my first lot of Gemcitabine as my counts were low. It was no big deal, I sat in a chair and they put blood through a drip. Boring really!

The plan was to collect stem cells from the GEMP, even if the GEMP didn’t work but they got Stem cells it would be a positive thing! A stem cell collection is just like collecting blood which then goes through a machine – takes out my stem cells and puts everything else back into me. No pain – just boring as it takes 4 hours and you can’t be unhooked! This would be done after the 2 week cycle when I am producing enough stem cells. The pic is me, dad and becky messing around with my Buffs sometime in the Christmas Holidays.

My only chance of a cure now is a bone marrow transplant using someone else’s bone marrow. Ideally this would be my sibling – in my case my sister Becky and she was tested immediately. It is safer and less risky if it’s a sibling but there’s only a 1 in 4 (25%) chance of her being that match. If she wasn’t a match we were told we would go to the national register. There was a good chance of finding someone on there. In the meantime they could give me a stem cell transplant using my own cells or if they can’t collect any from me for a number of reasons use someone else’s or give me high dose chemo. This wouldn’t offer a cure and I would almost certainly relapse but it would buy them time to find a donor if Becky isn’t a match. They can also use different kinds of chemo and high dose chemo which would blast my tumor but would destroy my stem cells and at that time they don’t want to do that but they were alternative options.


We were told on that day that they are still aiming to cure the cancer. If you get to 5 years in remission (no sign on cancer in the body and none for the previous 5 years) they can class you as cured. If they can’t get a cure they can offer what they call palliative care which is treatment to control the disease for some time, essentially different types of chemo etc - eventually the disease will overcome this and that is when they turn to just controlling any symptoms I have which is essentially a terminal prognosis. Scary stuff. Lets hope we never get here. I guess though u never know. I could be cured, I could not be - It’s a gamble. And it is something you think about – you cant help it.. I cried a lot but I think the steroids helped keep my spirits up at the time. Also I am positive, you can’t be all the time, its impossible but I was positive at the time.

I posted the following on an update to my friends at the time when I was told all of this regarding positivity:


Although I absolutely 100% appreciate all the messages from people please try not to say ‘Keep positive or keep your chin up’ because I hear this everyday from lots of different people and I already know this and to be honest it gets to the point where I get annoyed and I really don’t want to get annoyed with people especially when its not their fault. If you’ve said in the past don’t think I’ve been offended – chances are I haven’t – it’s just that nowadays its something EVERYONE says and it gets irritating! I need to be honest with people because that’s the only way I can be. If you don’t know what to say tell me! I would much rather hear ‘I don’t know what to say’ than something that doesn’t make sense or nothing at all. And if u feel too uncomfortable saying anything that’s fine. I’m not going to get offended or anything! With regards to uni, this is when I really decided that I probably wouldn’t be returning in September and I told my friends this. I may return in the future but I don’t know if I will and I have no idea when. Its something I can’t decide right now and I will have to decide when the time is right. That pic is me with my covering of hair before it all came out and grew back all stubbly like it is now!

So that brings me up to Christmas Day which in the circumstances was ok, it was a little bit weird cos you can’t help thinking ‘where will we be this time next year’ but it was a nice family day, I saw my Nan and Granddad. Although my Granddad wasn’t too well. He had emphysema and has been ill for a while but he’d
been ok but a few days earlier had developed a thrush infection so he wasn’t too well when we saw him but it was good to see him all the same. Also Becky was home for 4 weeks which was brilliant and I miss her now she’s gone back to uni. But Christmas Day itself was nice. We watched tele, opened presents, ate Christmas dinner and I got my taste for chocolate back! Thats me and Becky posing one day in the holidays.


But Boxing day came and with it more bad news…though it was nothing to do with my illness…

Yet more bad news....IVE has failed...

Well, after waiting for a week or so we’d heard nothing, we kept ringing the hospital but nothing happened, they kept saying they’d get back to us but when they did they knew nothing and didn’t have an appointment for us.

I started panicking, last time we were kept waiting, it was bad news and I was paranoid the same would happen. I didn’t feel any better, was I supposed to be? My cough was coming back too which scared the hell out of me…

Anyway eventually we got a phone call. We had an appointment with Dr. Smith at 11.30am on the Friday before Christmas. I also had Hickman line care and bloods.
In our appointment we were told yet more bad news. IVE had failed. I would not be having any more of it as it was pointless. I saw two x-rays, one from August and one from a week or so before. There was virtually no change. I almost cried but I held the tears back and they didn’t come for a few days afterwards. I think I was in shock. Dr. Smith said he was worried. Dr. Haynes, the big lymphoma specialist at Nottingham was worried. Hell I was worried!! I was now going to be put under his care and everything from now on was going to be done at Nottingham.

The plan was now to try something called GEMP which Dr. Smith had to Google to find out about, that’s how often he has had to use it!! We didn’t know anything about it really, we weren’t even sure if it was an inpatient or outpatient treatment. We knew it was out of Burton’s league and Dr. Smith said he didn’t think Derby would do it either so it was down to Nottingham and Dr. Haynes.

The tumour was resisting all the chemo we had thrown at it and so they had to try something totally different. The drugs in GEMP were in a different category to everything else.

I was in shock for a few days I think and I didn’t really want to talk about it too much at first though I did eventually. It was a tough time and just before Christmas wasn’t the greatest timing.

By this point I had had no treatment for over 4 weeks and my symptoms were rapidly returning, the cough, the breathing, the suffocating in my face, headaches….everything was coming back and we were worried….i wasn't eating well, just chicken mainly! And I had no taste for chocolate....or tea and I hadn't since I'd come out of hospital with the IVE. The pic is of Nottingham City Hospital, the main bit but we go to the Hemotology suite.
We got a phone call on Christmas eve morning to say could we come over to Nottingham ASAP to meet with Dr. Haynes….so off we drove….an hour later we were in the day-case unit…

Clinic....Derby and Burton

After my IVE I went into clinic about a week or so later. This was in Derby’s day case unit. When I got there they didn’t seem to realise I was there for Hickman line care and tried to take blood the normal way! They also said unless I was having Hickman line care I could expect blood to be taken in the normal way as it took too long to do it through the line. I was upset as I had been told before I had my line in that bloods could be done through it every time and it would make my life easier! They also wouldn’t allow mum and dad to be in the room with me while they did bloods, hickman line care and took my stitch out so I wasn’t impressed!

When we asked about the Hickman line packs and instructions for the district nurse which we had been told that normally they could do, we were told that actually that was too much paperwork and I would have to come into the derby hospital clininc once every week just to have my Hickman line flushed (to check its working) and blood taken. A 5 minute job and a half hour drive.


I was not impressed and i told them so. I think I got to the point where I was so sick of being told one thing and then something else happening, even minor things irritated me and I told them so! The nurse I dealt with was so hot and cold, one minute she was all sweetness and light and really nice, the next she was moaning at me because I cant inject myself with the GCSF injections (her comment being 'well what would you do if you were diabetic? - good for me I‘m not so why should I worry!!). After this the nurse then kept telling us how when I had my stem cell transplant I would be back and forth from Nottingham and I should get used to it - she didn’t seem to understand that wasn;t our issue!! It just seemed silly traveling all the way to derby for something that could be done at burton or even, if they’d got their act together at home.

Anyway I let my feelings be known to them, something I’d not done before and I have to say I felt better for it. As a result I managed to persuade them that I could go into Burton for the aftercare which wasn’t ideal compared to the nurse at home doing it but was better than going over to Derby every week and it was with people who I knew and liked and got on with.

I do get worked up sometimes and that was a classic example when little things don’t go to plan it really upsets things. The organization somewhere had cocked up and it was me that paid for it. So overall I wasn’t impressed with the day-case centre at Derby though the ward staff were fantastic.

The second appointment the following week was therefore at Burton and all went ok, I had a small wobble where I went a bit faint, probably from overdoing things a bit but I had felt not too bad! I was checked over and was fine. I had an x-ray anyway and was sent away knowing that I would hear from the doctor within a week or so. This would tell us what the effect of IVE had been and when my next dates for the second round were.

IVE and Recovering

I started my IVE the same day as my line was put in I think from what I remember! Anyway it all seemed to go ok for the first few days. I was on ward with other people, none of them particularly young but all ok. Although on the first night I had this woman who had a different kind of blood cancer to me but she only had 2 years to live and kept talking about this! And also about her husband who had killed himself. Which was thrilling stuff to be hearing about on your first night! Needless to say I was sympathetic to her but what do you say to someone who tells you all this?! And on your first night when your pretty scared anyway!! But aside from that there was a lovely old lady called Margaret who was very ill at first but by the time I left she was well on the mend. And a lady called Sue who was bed ridden but again very nice. I was moved wards after a day or so but was with the same people bar sue plus another lady whose name I didn’t know and a young girl who was only in for one night and was a bit odd! There was some kind of bug going round on the ward so they moved everyone and deep cleaned everywhere!

The IVE was connected to me 24/7 for 5 days. So I was constantly on a drip which I did kinda get used too. The first few days passed by fine and I felt okish, was able to get up and use the toilet on my own and get around fairly well. But by the third day, the Thursday I think it was I started aching all over and feeling really weak, I was then sick, quite a bit and was exhausted and I don’t mean exhausted like you normally feel, I mean exhausted like I have never felt before, to the point where I was lying down with my drink on the table next to me and I didn’t have the energy to reach and get it. I was barely eating at this point and was put on a food chart as well as a fluid chart. I saw the dietician and was given more forti-juice to help me get the nutrients I wanted but I got the point where I couldn’t even drink those. I also saw the psychologist when I was in there but when I was feeling well, I now see her regularly as it helps.

By the Sunday I had improved slightly but I was still very weak, however the doctors said it was ok for me to go home once my chemo had finished that day and so I did. Not entirely convinced I should be going home but I was so sick of hospital I had to get out of there! Plus the ward was potentially riddled with infection and I think they wanted me out of there asap!!

Once I was home I was pretty much sleeping most of the day, I was really weak and mum and dad had to do pretty much everything for me. It was probably the worst time we had really. Slowly I began to improve but I didn’t ever feel any better than when I went into hospital and I started to wonder if this was a bad sign….

And in goes the Central Line....

So on November 26th 2007 I went into Derby Hospital. When we got there we were told to wait in a little side room while they sorted stuff out. I was in a right state as I was so nervous about what was going to be happening. I think I cried straight for the whole journey and while we were waiting. Anyway after about an hour we were told that my Hickman line wasn’t due to be put in until the following day (Tuesday 27th) so in fact I could go home until 9am the following day and things would progress from there. Well that Monday was probably one of the worst days I’ve had, I spent the whole day in tears, paranoid about what was going to happen or if this didn’t work and I was petrified about having my Hickman line put in. You aren’t put to sleep for it but you do go into like a type of mini theatre. You are given sedation but I remembered from my bronchoscapy that I was totally aware of everything. You are given a local anaesthetic to numb the area but I was still so scared! Anyway I think that day helped in a way as when I went in on the Tuesday I was much more relaxed, knew more what to expect and although was still terrified coped with it a whole lot better!

WHAT IS A CENTRAL LINE?

Anyway if you are wondering a central line or Hickman line is a line which is inserted under the skin of your chest into a vein and the top of the tube sits in a large vein just above your heart. The space in the middle of the tube is called the lumen. The tube can have two or three lumens but mine has two. At the end of the tube outside the body each lumen has a special cap and this is what they attach the drip or syringe too. My line is actually quite a broad one, not a thin one like what are more common. It was put in with the intention of using it for the stem cell transplant. But it’s a pretty good one!

INSERTING THE LINE

The line, like I said was put in in like a Theatre. I was wheeled down in a chair with a lovely hospital gown on! And my line would you believe was given me a box with my name on and ‘left side’ lol! Anyway once I was down there the nurse talked through what would happen, all the staff were really nice and I think they could tell I was nervous!! A cannula was inserted into my hand (I knew I’d never escape without one more!) but the nurse got it in the first time and it was ok though I did ask how bad it would be without sedation – as the cannula was purely to give me sedation, that’s how much I hated them by then!! But I was assured I would be better off with it! Anyway once all that was over I had an x-ray to look at the vein and check it and everything. However the vein they usually use, in me, was too small for my line. They couldn’t use the right side of the chest as I still had my biopsy wound. In the end they decided on an alternative vein which is sometimes, but less commonly use but was big enough for my line.

The actual procedure I didn’t feel. I felt the local anesthetic which stung a bit but that was the most pain I felt. I was expecting to be in quite a bit of discomfort and feel some pushing and pulling and although I felt some of that it was minor.

The actual procedure is as follows: A small cut is made in the skin near your collarbone and the tip of the tube is threaded into a large vein. This is called the insertion site. The tube is then tunneled under the skin to reach the exit site. The exit site is the place where the end of the tube comes out of your body. A chest x-ray is done afterwards to make sure that the tube is in the right place. When the tube has been put in you will have dressings covering the insertion and exit sites. The pic shows my line!

However I had to be awkward! They got the first line in but on the monitors and stuff it showed that it was making my heart flutter and in actual fact it was too close to my heart!! So anyway that line was hurriedly taken out, but I didn’t feel anything other than a bit of a panic at what was happening!! Nurses were sent off to find a shorter line, the problem was that the vein they had used was a little bit closer to the heart so the line was too long. Eventually the right size line was found and put in, again I barely felt anything and once that was in, it was all done!! I was put in the recovery room and soon a nurse of the ward came to collect me with a porter. I had some pain in the area for a few days but nothing major and painkillers took it off. My line also is held in by a stitch which normally they aren’t but cause of the complications with putting it in its in a slightly weird position or something! Anyway the top stitch is out like everyone else but the bottom one has to stay in.

So that is the story of my Hickman line! I have to say once it was in I was so relieved and although it took a bit of getting used too – I mean I now have 2 wires hanging out my chest I’m fine with it now and I don’t notice it! It has to be flushed once a week when not in use and the dressing changed once a week but that’s it. And even though I had a few complications getting it inserted it’s been fine since and the procedure was no where near as bad as I ever thought it would be! Now I love the line, it means far less worry when I go into hospital and they can usually take blood from it (with a one time exception when it wouldn’t bleed!) but its definitely worth it.

So now the line was in, it was on to the IVE…..

Sunday 13 January 2008

PET scan and the bad news that followed....

I had my PET scan in Nottingham. A PET scan shows up exactly how much of the tumour is active whereas on a CT scan you can only see the size of the mass not how much is active. I was given a small injection into a vein of radioactive ingredient and then was left in a room for 50 minutes while it worked through my body. I was on the scanner for about half an hour and it was pretty uncomfortable but nothing strenuous. The picture is of a PET scanner.

We were expecting the results back within a week or two I believe. However we were left waiting for a long time and I got increasingly nervous. However I was expecting them to say that it had shrunk down and that everything was ok.

When we were finally called into the consultant’s office it was bad news. His fist words were ‘we are worried.’ It turned out that the RCHOP had not caused a response. Or if it had the tumour was growing back faster than it was causing it to shrink down. I was shocked, I cried a lot in the consultant’s office and at home. For the first time I started to think about what would happen should the treatment not work.

It was explained to us that I would now be transferred to Derby for inpatient chemotherapy called IVE. If RCHOP was 4 on the chemo scale (out of 10) then IVE was 7! They said after 2 lots of IVE 4 weeks apart they would collect stem cells and do a stem cell transplant using my own stem cells. This would involve taking my stem cells, giving my ultra high chemo and then putting the stem cells back in to recover the bone marrow and blood. This scared the hell out of me but as long as it made me better I didn’t much care!!

I was also told that I would need to have a central line fitted as my veins wouldn’t take the IVE chemo. I was booked into Derby for the following Monday, this was Friday, so I had the weekend at home before my 5 day stay in hospital.

Pnemonia

In late October, like I said I had been feeling really good. However one night I started feeling poorly and when I took my temperature it was raised, as in over the number that we have to ring the hospital for. As chemo can cause your counts to drop you are more prone to infection and any infection you get can be potentially serious as your immune system is lower than a normal person’s. Anyway I was shivering and felt ill, my breathing was getting worse and my temperature went up to 39. A normal temperature is anywhere between 35 and 37.5. So anyway we rang the hospital and were instructed to go in straight away. We were seen in A&E as was the rule, we had to got through A&E and they would admit me if necessary. Anyway in A&E an infection screen was done which means blood tests and urine sample and your observations (pulse, blood pressure, temperature and saturation levels – oxygen). They also gave me paracetomal to bring the temperature down though we’re not entirely sure they should have done that! And within a few hours I was sent home.

The next morning I felt no better and my temperature was high again, so we called again but this time as it was a Monday morning we could go straight to the chemo uni and see my own doctors. Well sort of, Dr. Smith was on holiday but I saw Dr. Ahmed, one of the doctors I had seen originally. He admitted me straight away, at that point they were unsure what was wrong. My biopsy wound was infected but that didn’t explain my worsening breathing diffcuclties.

I was in hospital for 2 weeks and after a few days they soon discovered, after an xray that I had pneumonia. I was barely eating, could barely breathe and was on 24/7 oxygen. One nurse told me in the first day or so that I needed to find a way of coping, things were going to get worse before they were going to get better; that I didn’t need my oxygen and my breathing was due to me panicking! By the end of that same day I was being monitored by high dependency unit staff and they were pretty certain I had pneumonia so I’m guessing she felt a bit of a fool! She really upset me and I have never quite forgiven her! Luckily I’ve never been on that ward again and am never likely to be. All the other staff were brilliant and Dr. Ahmed was fantastic. I had my blood gases taken which is a very painful injection into the wrist. Not nice! Anyway I was on hourly obs overnight for 2 nights and the only reason I wasn’t taken to high dependency uni was that it was an open ward and I was at risk of infection. They gave me IV antibiotics and hoped they would work. My mum and dad stayed overnight one night and until midnight the next night. My dad had words with Dr. Ahmed who told him to prepare himself and my my mum for the worst as I was very ill and may not make it. I didn’t realise that at the time but have since found out. It freaked me out at first knowing I was that ill but I’m ok with it now,, I got through in the end!! But I don’t think I realised at the time how ill I was. I knew I couldn’t walk from the bed to the toilet (which was at the end of the bed) which scared the hell out of me. Not being able to breathe is the scariest thing in the world!

We though from the x-ray I had while I was in with pneumonia that the tumour has perhaps shrunk by about 25% which we took as a positive at the time.

One night in hospital my cannula I had in stopped working. I needed another one in as I needed the IV antibiotics. 3 doctors tried and failed. I had 5, very painful attempts as a junior doctor, then an SHO, followed by an ‘expert A&E nurse’ who ended up bursting my blood vessel and giving me a bruise to remember tried to get this cannula in. I was so ill and so tired I began to get very very agitated and stressed. By the time the nurse had failed I refused to let anyone else near me with a needle and told people I couldn’t take anymore. The ward sister phoned the doctor and asked if I could have oral antibiotics instead over night but he said I needed the IV ones as they seemed to be working and he couldn’t risk stopping that. When she told me that I screamed and kicked the bed. I was sooo frustrated! I was given sedation which I didn’t believe would work and an anaesthetist was sent back down to do it. He had been in previously but I had refused to let him even try as he wasn’t happy with my veins. By the time the sedation kicked in I was happy to let him near me and called him amazing when he got the needle in first time!! I think dad had been praying for it to work too! It was one of the worst nights we’ve ever had but I managed to get through it in the end.

After 2 weeks I was showing clear signs of improvement, I could breathe again and I was let out of hospital. It took me a long time to recover from the pneumonia, I was very weak for a long time, I wasn’t eating properly though I was getting enough, I had fortijuice drinks to ensure I was getting enough nutrients and enough inside me. I had my fourth RCHOP as an inpatient while I was in hospital. A week or so later I was sent for a PET Scan to check my progress.