I thought I had better update now, or I'll be crap as usual and not update for a while.
Theres been some bloody fantastic things, and then the chemo (which for chemo is ok...but still not as fantastic as other things).
I had my Hickman line put in on Friday 8th.
Now of course I knew what to expect as it's my second line in as many year. It was a little more painful than the first time though, as this time it's a double lumen (which means it has 2 ends on it, so I can receive more drugs at the same time). But overall the experience was as expected, with little soreness afterwards.
The weekend to follow was one of the best in my life. Good times :)
Monday 11th saw an earlyish morning to come down to Christies to start Chemo.
I arrived nice and early, as requested, got brought to the ward, but didn't start on any drugs till about 3:30pm - which knocks the whole regeime back!
If anyone is interested, this is the treatment i'm currently having: ESHAP.
All has been uneventful I guess. 2 lots of visitors. (Tuesday and today)
Eyedrops 4x a day which I was totally not used to. 2-3 drip pumps at a time.
Bloody steroids making me hungry as hell and suffer from bad insomnia (thank goodness for Temazepam!) I've put on 1/2 stone since Monday, which I'm not happy about. 2 people have now commented my face looks different :(
I've had a bit of a depressing day today. Feeling very homesick and teary, and just need to be back with the people I love I think. Even if it is only for 2 weeks till I'm next in here again.
Lots and lots of feelings of guilt too. I know it's not my fault i'm ill, but I hate putting people through all this stress and shit. No one should have to go through it, and I hate myself for doing it to those close to me. I've really struggled with these feelings today - it's like a big fight inside my mind and it's hard to deal with.
I should have been home today (Friday) but because of the late start on Monday, it's going to be tomorrow that I can escape.
Phew.
Cabin Fever is not good.
Friday, 15 October 2010
Thursday, 30 September 2010
Chemo, Transplants and TMI
Today was my appointment with 'The Transplant Doctor' (as I like to call him).
I saw him last year when I was supposed to have my transplant, but obviously that all went tits up, so I was there again today.
He just went through everything again - but obviously this time it was geared around an Allogenic SCT, rather than an Autologous transplant.
He told me the risks, the hospital stay, the chemo, the blood tests, the recovery times, and he also explained in more simple terms how the transplant works.
IF (thats a big if) the chemotherapy works enough for me to have the transplant (tumours need at least a 50% response), then I will have the transplant quite soon after - so if things go smoothly (do they ever for me?), we are probably looking around x-mas time.
Recovery time for an Allogenic SCT is about 12 months.....................so that plus Chemo time in a few weeks we are talking minimum of 15 months.
There isn't even a big chance of it all working......but it's this route or nothing.
Fun.
I saw him last year when I was supposed to have my transplant, but obviously that all went tits up, so I was there again today.
He just went through everything again - but obviously this time it was geared around an Allogenic SCT, rather than an Autologous transplant.
He told me the risks, the hospital stay, the chemo, the blood tests, the recovery times, and he also explained in more simple terms how the transplant works.
IF (thats a big if) the chemotherapy works enough for me to have the transplant (tumours need at least a 50% response), then I will have the transplant quite soon after - so if things go smoothly (do they ever for me?), we are probably looking around x-mas time.
Recovery time for an Allogenic SCT is about 12 months.....................so that plus Chemo time in a few weeks we are talking minimum of 15 months.
There isn't even a big chance of it all working......but it's this route or nothing.
Fun.
Monday, 27 September 2010
...
Fail.
Everything is a fucking failure.
The treatment didn't work.
Cancer is more active than it was before I had the treatment, and also growing again.
ESHAP chemo starts in 2 weeks.
8 years fighting is taking it's toll on me.
Everything is a fucking failure.
The treatment didn't work.
Cancer is more active than it was before I had the treatment, and also growing again.
ESHAP chemo starts in 2 weeks.
8 years fighting is taking it's toll on me.
Tuesday, 21 September 2010
The past 3 months....
I last posted after I'd been at home for 1 week when I'd received the CHT-25 treatment.
Now it's about 14 weeks post treatment. So much time has passed, and all I've wanted is my life to be as normal as possible - which meant not writing here.
I had a scan at 4 weeks which was very positive - nodes in my neck were no longer active. Chest tumours had shrunk by half, and under arm by 2cm. All fluid in my lungs had also cleared, as had the rash on my chest. I had energy, and could actually breathe.
Since then I seem to have been on the up - doctors have been pleased with my progress. Doing their usual prodding and poking they continued to think the tumours were shrinking.
My bloods continued to drop, but the lowest they got was my neutrophils at about 1.2.
After 10 weeks of continuous weekly hospital visits they said I didn't have to go back for my last few appointments as I'd had no problems, and my bloods were on the up. They booked me in for a PET scan, and to get the results a week later.
The LEP and both Granada and BBC have all done a few more pieces, so I was famous for a short while again.
Hearing I didn't need to go back for a few weeks, and also starting to fall back into depression - like a big chasm below me - only holding onto sanity with my fingertips, I requested my PICC line to be taken out, and I booked a holiday with Mum.
Now I'm back home, and my PET scan was today. I hate those things. hate.
The bed you lie on is metal and cold. The room is freezing. The arm rest thing is metal and cold, and a conbination of havig your arms above your head, and your whole body freezing makes your shoulders feel like they are being ripped out of their sockets. The nurse counted, and in the past 18 months I've had 5 PET scans.
I'm sure I'm always going to be slightly radioactive. Just look for the 'glowing' house on google maps.
Results day is 27th September.
In 8 years I've never been nervous about scan results. This time I am.
All I want is for the treatment to have been a massive success, then I can get on with chemo and a transplant, and get my life back on track.
I want to enjoy myself. I want to travel. I want to work. I want to feel 'normal' again.
Now it's about 14 weeks post treatment. So much time has passed, and all I've wanted is my life to be as normal as possible - which meant not writing here.
I had a scan at 4 weeks which was very positive - nodes in my neck were no longer active. Chest tumours had shrunk by half, and under arm by 2cm. All fluid in my lungs had also cleared, as had the rash on my chest. I had energy, and could actually breathe.
Since then I seem to have been on the up - doctors have been pleased with my progress. Doing their usual prodding and poking they continued to think the tumours were shrinking.
My bloods continued to drop, but the lowest they got was my neutrophils at about 1.2.
After 10 weeks of continuous weekly hospital visits they said I didn't have to go back for my last few appointments as I'd had no problems, and my bloods were on the up. They booked me in for a PET scan, and to get the results a week later.
The LEP and both Granada and BBC have all done a few more pieces, so I was famous for a short while again.
Hearing I didn't need to go back for a few weeks, and also starting to fall back into depression - like a big chasm below me - only holding onto sanity with my fingertips, I requested my PICC line to be taken out, and I booked a holiday with Mum.
Now I'm back home, and my PET scan was today. I hate those things. hate.
The bed you lie on is metal and cold. The room is freezing. The arm rest thing is metal and cold, and a conbination of havig your arms above your head, and your whole body freezing makes your shoulders feel like they are being ripped out of their sockets. The nurse counted, and in the past 18 months I've had 5 PET scans.
I'm sure I'm always going to be slightly radioactive. Just look for the 'glowing' house on google maps.
Results day is 27th September.
In 8 years I've never been nervous about scan results. This time I am.
All I want is for the treatment to have been a massive success, then I can get on with chemo and a transplant, and get my life back on track.
I want to enjoy myself. I want to travel. I want to work. I want to feel 'normal' again.
Monday, 12 July 2010
1 Week at home
Well, I escaped last Monday - whch was also a joke.
Waited 3 hours for medication, which was then all wrong.
Luckily Mark rescued me, and we got a direct train home, which took just over 2 hours - I could just cope with that, whilst inflicting my radiation on the general public.
The past week has just been normal, apart from not having close contact with anyone. After tomorrow I'm 'safe' again around adults.
I went to Christies today for a check-up and blood test.
My White count was 4.5, HB 11.4, and platelets 566.
My platelets (high because of the lymphoma) are the ones that are most expected to drop in the next few months (because of the treatment), so I'm to be a regular visitor of Christies for the next 3 months.
I'll be going [at least] every Monday! Oh, the fun!
Waited 3 hours for medication, which was then all wrong.
Luckily Mark rescued me, and we got a direct train home, which took just over 2 hours - I could just cope with that, whilst inflicting my radiation on the general public.
The past week has just been normal, apart from not having close contact with anyone. After tomorrow I'm 'safe' again around adults.
I went to Christies today for a check-up and blood test.
My White count was 4.5, HB 11.4, and platelets 566.
My platelets (high because of the lymphoma) are the ones that are most expected to drop in the next few months (because of the treatment), so I'm to be a regular visitor of Christies for the next 3 months.
I'll be going [at least] every Monday! Oh, the fun!
Prison - Day 7
I knew the weekend would be bad, but this bad......I didn’t expect.
Firstly, if I was going home tomorrow, I really think I would discharge myself. Theres no way I could stand another day of being treated like crap.
Yesterday (Saturday) my breathing and chest was bad, and the doctor who came round said I should go on a nebuliser, using Salbutamol. The nurse came into my room at 3:30ish and set it up, showing me where to put the liquid, and how to turn the air on and off. The she left. Did she tell me when to turn it off? No. Luckily I know. Did she, or anyone else come to check I was ok, if it was helping, that I had done it right? No.
Haven’t mentioned in my blog earlier, but been having a problem getting drinks. For my first 2 days, someone came round with a trolley shortly after each meal was served to offer tea or coffee. This suddenly stopped, and no amount of telling/complaining to different people made any difference. I told the radiation man, who told the Staff nurse, who came and asked me why I hadn’t told her. Errr, I had, the day before.
Well, today things have come to ahead – after only being offered a cup of tea at breakfast time, and having to buzz and ask for one the rest of the time, It came to tea time, and I was quite hungry.
Following every other day I have been here, someone comes round about an hour before serving time with a menu, and takes my selection. In an evening, it’s approx 5pm when they come with the menu, and 6pm when we are served.
Tonight it got to just after 6pm, and no one had even been with a menu. As you can imagine, I was pretty hungry by now, so pressed my buzzer so I could ask what time meal time was (I don’t know, perhaps they have it late on a Sunday?!)
Pressed my buzzer and waited a while, and a lady popped her head round the door and barked “What do you want?”
Me – What time is supper time? (it says supper on the menus, so thought I would say that instead of the Northern ‘Tea)
Her – What?
Me – What time is supper time?
Her – What?
Me – [getting a bit annoyed] Food. What time is food time?
Her – Medicine?
Me – NO. Food, you know, eat.
Her [shouting] – you have to wait while we prepare it.
I started to tell her I hadn’t even seen a menu yet. She went and got a menu, and held it out (standing at the door, where I can’t even get near)
Her – Here. I come back for it.
Me – You can’t, once I have it, you can’t have it back
Her[shouting] – I CANT COME IN. (She can come in, only up to the barrier, like everyone else). TAKE IT.
Me – I can’t.
Her – I leave it here. [and put it down on the sink, that I’m not allowed to touch]
Me – Can you get a nurse please, I’m not happy.
Her [storms out of the room and begins to shout] – ROOM 10. SHE SHOUTING. I CAN’T DO 2 THINGS AT ONCE.
Honestly, I’ve never encountered anyone who works in a hospital to be so hostile! I’ve been nothing but polite to the people who have brought me food and drink, but if she comes near me again, there won’t be a ‘please’ or ‘thank you’ in sight!
Firstly, if I was going home tomorrow, I really think I would discharge myself. Theres no way I could stand another day of being treated like crap.
Yesterday (Saturday) my breathing and chest was bad, and the doctor who came round said I should go on a nebuliser, using Salbutamol. The nurse came into my room at 3:30ish and set it up, showing me where to put the liquid, and how to turn the air on and off. The she left. Did she tell me when to turn it off? No. Luckily I know. Did she, or anyone else come to check I was ok, if it was helping, that I had done it right? No.
Haven’t mentioned in my blog earlier, but been having a problem getting drinks. For my first 2 days, someone came round with a trolley shortly after each meal was served to offer tea or coffee. This suddenly stopped, and no amount of telling/complaining to different people made any difference. I told the radiation man, who told the Staff nurse, who came and asked me why I hadn’t told her. Errr, I had, the day before.
Well, today things have come to ahead – after only being offered a cup of tea at breakfast time, and having to buzz and ask for one the rest of the time, It came to tea time, and I was quite hungry.
Following every other day I have been here, someone comes round about an hour before serving time with a menu, and takes my selection. In an evening, it’s approx 5pm when they come with the menu, and 6pm when we are served.
Tonight it got to just after 6pm, and no one had even been with a menu. As you can imagine, I was pretty hungry by now, so pressed my buzzer so I could ask what time meal time was (I don’t know, perhaps they have it late on a Sunday?!)
Pressed my buzzer and waited a while, and a lady popped her head round the door and barked “What do you want?”
Me – What time is supper time? (it says supper on the menus, so thought I would say that instead of the Northern ‘Tea)
Her – What?
Me – What time is supper time?
Her – What?
Me – [getting a bit annoyed] Food. What time is food time?
Her – Medicine?
Me – NO. Food, you know, eat.
Her [shouting] – you have to wait while we prepare it.
I started to tell her I hadn’t even seen a menu yet. She went and got a menu, and held it out (standing at the door, where I can’t even get near)
Her – Here. I come back for it.
Me – You can’t, once I have it, you can’t have it back
Her[shouting] – I CANT COME IN. (She can come in, only up to the barrier, like everyone else). TAKE IT.
Me – I can’t.
Her – I leave it here. [and put it down on the sink, that I’m not allowed to touch]
Me – Can you get a nurse please, I’m not happy.
Her [storms out of the room and begins to shout] – ROOM 10. SHE SHOUTING. I CAN’T DO 2 THINGS AT ONCE.
Honestly, I’ve never encountered anyone who works in a hospital to be so hostile! I’ve been nothing but polite to the people who have brought me food and drink, but if she comes near me again, there won’t be a ‘please’ or ‘thank you’ in sight!
Friday, 2 July 2010
Prison - Day 5
Slept until 8:20, when I was woken by a knock on the door alerting me breakfast was here.
Radiation man came early to tell me it will definitely be Monday when I am released. Rads are 55.
It’s getting harder to write anything, simply because nothing is happening, and I guess when you are cut off from speaking face to face with people (apart from the odd word from doctors/nurses popping in), everything starts to blur into one.
I’m glad there’s no clock in the room, as I’m sure each hour would feel like a day. Only the weekend left here I suppose, but I’m unsure as to whether that will be worse and time will go slower or not.
Radiation man came early to tell me it will definitely be Monday when I am released. Rads are 55.
It’s getting harder to write anything, simply because nothing is happening, and I guess when you are cut off from speaking face to face with people (apart from the odd word from doctors/nurses popping in), everything starts to blur into one.
I’m glad there’s no clock in the room, as I’m sure each hour would feel like a day. Only the weekend left here I suppose, but I’m unsure as to whether that will be worse and time will go slower or not.
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