My History

I've been wanting to write a blog about my experiences for a while, but never did get around to it.
I've finally decided to sit down and sort it all out, so i'll start at the beginning, and add some blog entries from my diary.
Apologies if some entries are long, and also written in different tenses - it depends when I actually wrote them!

Tuesday, 31 May 2011

Up to Day +125

A lot has happened since I last wrote, and I know I should have recorded things sooner, but these days I find it hard being in the right frame of mind to sort out my thoughts/feelings, never mind writing them down for people to read.

After the 'good' news with regards to my scan a few weeks ago, I saw the 'main' doctor for transplants, who told me he's not as pleased as the other doctors with the results, and that we 'still have work to do'.

I did have my bone marrow biopsy, and also my central line taken out, which is nice to be 'free' from having something dangling out of your chest all the time!

I was taken off all ciclosporin, and my skin GVHD continued to spread (face/head/hands/arms/trunk/legs), and I also developed GVHD in my gastrointestinal tract - not so nice, but I am coping with both types that I have.

Then just over a week ago I started to get out of breath doing simple things (getting out of bed/walking around the house). I waited until I went to my regular 'Tuesday' clinic - where I had my o2 tested, and I was found to only have about 82% oxygen in my blood.
The doctor decided to admit me there and then - I persuaded them to let me go home and get my clothes etc, and I was put in a side room, on Ward 11 later that evening.

My breathing was very bead for the first 2 or 3 days - I was using oxygen after walking jusr a few steps to the bathroom. I had multiple tests - X-ray, CT Scan, Broncoscopy (which I DO NOT recommend), lung function test, blood tests, nasal swabs......
The results came back with a type of PCP. I was put on steroids, and lots of antibiotics - both oral and IV.
Luckily I did improve quickly, and was off the oxygen by Thursday, and off the IV antibiotics by Saturday.
Unfortunatly the doctor thinks I should stay in for a while, which is what i'm finding hard to cope with. I've been here for a week today, and they want me here till about Friday - as long as a scan/x-ray comes back clear, and I will still continue on antibiotics for 2 or 3 weeks when I get home.

'Health' wise I actually feel fine, which I think is quite frustrating as I want to be doing things, not stuck in a hospital room! Luckily my doctor has said I can leave my room, so I've had a few walks around the hospital, and last night he said it's fine for me to go for a drive, and go out to eat somewhere.

'Mood' wise is what I'm finding increasingly hard, and it seems to get harder every time I have to stay in here.
October, November, December I spent a week in each month.
January/February I spent a month in.
May - so far it's been a week........I know there has been a gap, but you get used to being at home, and in your daily routine, happy and safe!
Right now I'm just counting hours until I can get home to my family....thats what I miss the most.

Wednesday, 4 May 2011

Up to Today - Day 98

I am now on Day 98 since the transplant, and everything is going well!
Still....more weekly visits, but the doctors being very pleased with my progress.
Dr Bloor said I was an example of how a transplant should go, and how recovery should be - thats a positive thing to hear from a Doctor, and he is always so straight! I like his attitude, he tells it like it is!

My Ciclosporine levels (anti-rejection drug) have been up and down, rather than stable (should be 150, but mine have been as low as 34, and as high as 260!) but luckily doctors didn't seem too bothered, as I wasn't having any unwanted symptoms/side effects.

Last week, on day 89 I had a PET scan, and I got the results yesterday...........lets say they are good
No signs of the cancer that was there before my chemo at the end of last year!
My lungs are very scarred, and the is a lymph node under my right arm that is 'active', but it's not grown since my scan in December, so they aren't thinking it's cancer, just scarring really (as if it was cancer, it would grow). They also tested the 'donor cells' in my body, and these are at 100% - which is apparently great
I have another Bone Marrow Biopsy next Tuesday, and they are also going to take my Central Line out of my chest
I feel i'm on the road to being 'normal' again!

I'm still on weekly visits, until I am off my anti-rejection drugs, then I'll move to fortnightly, then monthly!
They will still keep a close eye on me, so lets hope my body has learned to fight cancer now, instead of accepting it's a 'normal' part of me!

I've developed GVHD (Graft versus Host Disease) - my skin is very flakey on my face and hands, and itches a bit, but they've given me steroid cream for that.....but developing GVHD isn't a bad thing, especially before day 100 - and i've only just developed it!
I can deal with dry skin (much like psoriosis (sp)).

Friday, 18 March 2011

Day +14 to now!

Wednesday 9th February (Day +14)
Not a good day, very down and depressed for some reason, and no visitors. Had to have a bag of calcium over night.

HB - 10.3
Platelets - 148
White - 0.3
Neutrophils - 0.3

Thursday 10th February (Day +15)
Not sure exactly what my neutrophils are - doctor said 0.4, Nurse said 0.3, but Doctor said as long as they are 0.5 I can go home tomorrow or Saturday.
Trying not to get my hopes up, but it's hard. All I want is to be at home with Mike. Never missed anyone so much!
Today/tonight is going to drag, and I only hope everything is ok tomorrow.

HB - 10.4
Platelets - 156
White - 0.4
Neutrophils - 0.3/0.4

Friday 11th February (Day +16)
As predicted, it didn't happen. Ended up sleeping to block out disappointment.
Mum came late afternoon as I felt shit

HB - 9.9
Pletelets - 153
White - 0.4
Neutrophils - 0.4

Saturday 12th February (Day +17)
Had a GCSF injection in the hope of raising my white/neutrophil count.

HB - 10.3
Platelets - 157
White - 0.2
Neutrophils - 0.2

Sunday 13th February (Day +18)
My counts are up and I can go home! I was too excited and eager to get out, so I didn't find out any of my actual counts - I didn't care as long as I could get out!
My weight is also coming down and nearly back to normal.
Back on Tuesday for my first blood test.

Tuesday 15th February (Day +20)
Christies for blood test - this is now a weekly thing, and I could also be called back on Fridays depending on my blood count and Ciclosporin level (Anti-rejection drug)

HB - 10.9
Platelets - 139
White - 2.1
Neutrophils - 1.9

Tuesday 22nd February (Day +27)
Going ok, although struggling with taking my tablets, so my Ciclosporin levels are rather low, and I have to up my dose.
Absolutely shattered, and have developed lots of ulcers in my mouth - that bad i'm struggling to eat.

HB - 11.0
Platelets - 182
White - 5.3
Neutrophils - 4.9

Friday 25th February (Day +30)
Mouth so painful, can't eat or drink, struggling to talk. Morphine didn't even work for the pain.
Back to Christies with Mum for a blood test as I had to up my Ciclosporin dose (struggling with the tablets because of my mouth).
John the Nurse Practitioner took swabs from my ulcers, and also put me on a drip for fluids.

Monday 28th February (Day +33)
In for a Bone Marrow Biopsy today, Mark has brought me. Been told that my ulcers are in fact Cold Sores! Yes, Cold sores IN my mouth! Damn painful, have been prescribed yet more drugs on a very high dose to help.
Bone Marrow Biopsy was my most painful yet - the sedation didn't seem to work, and I remember every single second, especailly the painful bits, where I screamed and was apparently heard in the waiting room and blood room!

Tuesday 1st March (Day +34)
Back for normal blood test today, mouth still as painful. Even the staff in the blood room have noticed I'm not my 'normal' self. Struggling to eat and drink, have lost weight, and still finding it hard to talk (bet everyone else is thankful!)
Didn't get my blood results today, but they can't be bad, as doctors don't seem worried.
Phone call in evening about my ciclosporin level - it is still low, so up my dose and go back on Friday for another blood test!

Friday 4th March (Day +37)
Back to Christies for blood test today with Mum.
Didn't go to the hospice yesterday as I was in too much pain, as my mouth is still bad.

Tuesday 8th March (Day +41)
Normal blood tests today, and my mouth has started to improve - I think Saturday was the turning point, I managed to start eating and drinking a little.
I saw Dr Bloor, and he said I am doing exeptionally well. I asked him when I can say if i'm well or not, as people keep asking if the transplant has worked, and it's really hard to explain to people that there isn't a day I can turn round and say "Yes, it's worked", or "No, it's not worked", as it's a lot more complicated than that!
My immune system is still that of a baby, and I have to wait for it to grow, and see if it learns to recognise the cancer cells as bad, and kill them! It's also a long recovery, being on different medications whilst my body learns to fight off bugs/germs that 'normal' people can fight off.
Managed dinner at the Trafford Centre with Melissa, and then we even managed a little walk around (very slowly!).

Wednesday 9th March
Had to take Teagan to the vets today. She has had a small lump on her face for a while, but it seems to have got a lot bigger over the past week or so, and is now noticable when you look at her from the front.
The vets did a fine needle aspiration, but could only get blood from it, so she is booked in tomorrow morning for a general anasthetic and a proper biopsy. The vets said it could be an underlaying infection, or something more sinister.

Thursday 10th March
Dropped Teagan off at the vets, then went off to the Hospice for the day, whilst waiting for the phonecall to say I can pick her up.
Got the phonecall early afternoon, and picked Teagan up just before tea time. She seemed fine (as usual), the vet said she'd been a good girl (also as usual!), her face is a bit swollen and she has 2 stitches.
Back on Tuesday evening for a post-op check, and hopefully the results of the biopsy.
Poor thing is very vocal tonight, and crying a lot, so must be in discomfort as it's not like her to be vocal like this :(

Friday 11th March (Day +44)
Mike and I were being assessed this morning by Social Services for some aids around the house. The lady was due at 10:30, then Mum planned to pick me up at 11:30 to take me to Christies for my blood test.
9:45am Mum phones and tells me she has shingles!! Not good at all! We knew I probably wouldn't be able to see her, but I phoned Christies up to check anyway, and they confirmed what we thought!
By now it was 10:45, the Social Services lady was here, and I had to try and find a lift!
I phoned Mark, but he was obviously working, so didn't answer the phone! I knew Melissa was doing her important uni work, so she was going to be my last call, so I went onto Facebook and sent a message to Shelley!
She phoned me, and luckily she could get out of work to take me down to Christies - but what a drive for her! Lancaster to Leyland, then down to Manchester! But what a life saver she was!
She managed to get to our house in record time, and we managed to get down to Christies in time for my blood test (They have to be done by a certain time, as the Ciclosporin levels get sent off at 2pm).
Before we even got home, John had phoned to say keep my doseage the same for now.

Teagan has a wicked arse today - I think the anasthetic did something to her, she really stinks!

Tuesday 15th March (Day +48)
Back to Christies for my weekly blood test with Melissa!
I saw the doctor who said my Ciclosporin levels are still low, but not to worry. He also checked for the results of my Bone Marrow Biopsy, which luckily were clear, and my bone marrow is producing blood cells (a good thing!!).
My HB was a little low (8.2), but everything else seemed to be good, and he spoke of hopefully removing my central line by day +60, but thats not too far off, so I'm not sure if that will happen that soon, although it would be nice!
I think he noticed my hair is starting to grow back too, but to be honest I think thats the Ciclosporin, as it causes 'excess hair growth', which I have noticed in a few other places (My moustache and beard are coming along nicely!).
Melissa and I then escaped and went for dinner at the Trafford Centre, and I managed another little walk around.
My energy levels are SLOWLY coming back - I know it's still going to be a very long slog, and it's also very bloody frustrating, as I just want to get on with 'normal' life again!

Teagans vet appointment was just before tea. Her face has swollen up so much, and she looks so uncomfortable, but as usual, good behaviour and no complaints!
Unfortunately the news wasn't good - the biopsy has shown that she has T-Cell Lymphoma - which isn't good. It doesn't respond to chemo. The vet said there was more tests they wanted to do with the biopsy sample. I asked how much it was going to cost, as i'm on a very limited budget - they know this, as they know the situation with me being ill.
She told me the cost, but then told me they have a fund, and have agreed that the test will be paid for out of the fund - I got tears in my eyes at this, so very nice of them to help me out at this time.
I asked the dreaded question...'how long'.
Weeks to months was the reply.
The vet then gave Teagan an anti-biotic and an anti-inflammatory injection, and sent us home with 3 days of anti-inflammatory tablets for her face.

I somehow managed to hold myself together at the vets, but broke down at home.

Friday 18th March (Day +51)
The past few nights haven't been good - I'm not coping with the news about Teagan. I can deal with myself being ill, and all the bad news I've had in the past, but I can't seem to deal with this.
The swelling on her face is slowly going down which is good. We're back to the vets on Tuesday for her stitches out, and the hopefully the results of the tests will be back - although i'm not entirely sure what they will reveal.
No hospital today, which is a nice rest, but back on Tuesday morning for my 'usual' blood tests and check-up.

Wednesday, 9 February 2011

Day +4 (30th January) to Day +13 (Tuesday 8th February)

Day +4
Didn't feel too bad until anti sickness was given - I had a funny turn, was dizzy/light headed/slurring words. Not having that one again! It really knocked me for the rest of the day. Managed to eat, but not good on drinking. Shelley and Mark came.

HB - 9.3
White - 0.1
Neutrophils - 0.1

Day +5
Woke up early - up for 10am. Sick by 10:10am but ate straight afterwards.
BBC Northwest Tonight phoned - wanting an update and another interview, but I said not yet - i'm definitely not up to it, plus I don't feel confident in my looks. He asked if I could phone when I am up to it.
Saw Dr....he was quite happy with me.
Have been asked to keep a food/drink chart so they can see how many calories i'm having.

HB - 9.6
Platelets - 73
White - 0.0
Neutrophils - 0.0

Day +6 (My Birthday)
Birthday, but not well. Slept all day!
Mum and Mike came with my cards which I opened, then went back to bed and slept the whle time.
Only had tea today, throat quite sore.

HB - 9.2
White - 0.0
Neutrophils - 0.0

Day +7
Feeling better today. Managed to eat breakfast and have a drink.
Throat not as sore. Dr says i'm doing ok.

HB - 9
White - 0.1
Neutrophils - 0.0

Day +8

HB - 8.1
Platelets - 11
White - 0.0
Neutrophils - 0.0

Day +9
Had platelets as I had a low count. Feel like shit - so tired. No visitors.

HB - 9.2
Platelets - 10
White - 0.0
Neutrophils - 0.0

Day +10
Low o2 in the morning so put on oxygen for an hour.
Had a bag of blood as my HB was low this morning.
Mum came to visit. Mike not well :(

HB - 7.8
Platelets - 64
White - 0.0
Neutrophils - 0.0

Day +11
Low o2 in the morning again (3am) so put on oxygen for a few hours.
Had another bag of blood.
Little Heather and Liam came to visit am, then Shelley and Mark came pm.

HB - 8.8
Platelets - 65
White - 0.0
Neutrophils - 0.0

Day +12
Slept ok last night. Suspected chest/lung infection so went for an x-ray in afternoon, had to wear a mask when wheeled down the corridor.
Doc said i'm having problems getting rid of fluid due to the fact I had radiotherapy on my chest in the past. Not sure how that works, but obviously is does.
Mel visited and pampered my feet.
Drank more today.
Am in agony with the fluid in my back (started on Sunday). The skin is VERY tight and sore, it hurts to lean on things when I sit or lie down, but when I stand up it hurts even more as the skin stretches too much.
Took tablet that makes you pee, and am peeing loads, but not loosing any of the weight i've put on (approx 1 stone of fluid)
I'm comfy when in the shower, so had a shower to try and ease it a little, although the pain returns too quickly.

HB - 9.9
Platelets - 92
White - 0.3
Neutrophils - 0.1

Day +13
Saw Dr - said I don't need antibiotics at the moment, although they will keep their eyes on me.
Weight still up and fluid still bad.
Eating and drinking a lot better.
Had a foot massage by complementary therapist - was lovely and fluid went, but came back!
Mum came afternoon and stayed till evening. Had a shower then went to bed as pain in back very bad.

HB - 10.5
Platelets - 118
White - 0.3
Neutrophils - 0.3

Saturday, 29 January 2011

Days -5 to 0 to +3

Not much happening at first, just Fludarabin chemo, and seeing the doctor daily.
Allowed out of room to have a walk as bloods have not dropped too low yet.

Day -2
Malphelan chemo + Mum and Mike visited.

Day -1
Campath chemo, gave me a rash. Sickness and feeling grotty, not been eating much at all for a few days, but managed a microwave pizza and a yoghurt!

Day 0
Woke up sick, lots of anti-sickness. Dozed all day.
Shelley and Mark visited most of the day.
Got Stem Cells around tea time - very uneventful!
Had 2 bags of blood as low HB.
Mum came and stayed over.

Day +1
New syringe driver for sickness as other had made my arm sore.
Lots of anti-sickness.
Mum here.

Day +2
New syringe driver in tummy as both arms now sore.
Got up about 3pm, had a shower and watched a bit of TV. Managed 1/2 bowl of soup.
First day for a few days that i've felt a bit more normal.
Had syringe driver taken off at tea time, as it keeps 'occluding'.
Tummy a bit odd looking/sore where it was, so prob for the best. Both arms red and sore from it.

Day +3
Slept a bit better last night. Arms still sore where driver was.
Ate breakfast and up at about 10am, feeling a little better.
Mum and Mike visited for a few hours.
Still feeling a little sick, but better than I have been.
Been having a funny feeling in my face, like pins and needles, so nurse did a blood test and it came back I was lacking Magnesium, so put on a 2 hour drip to help counter the effects.

Have been getting blood results every day, so here they are from Monday onwards;
HB - 8.2
Platelets - 300
White - 3.4
Neutrophils - 3.3

HB - 7.5
Platelets - 262
White - 2.0
Neutrophils - 2.0

HB - 7.6
Platelets - 250
White - 3.0
Neutrophils - 2.9

HB - 9.5
Platelets - 250
White - 4.0
Neutrophils - 4.0

HB - 9.7
Platelets - 154
White - 1.7
Neutrophils - 1.7

HB - 9.6
Platelets - 140
White - 0.6
Neutrophils - 0.6

Thursday, 20 January 2011

Day -6

Didn’t sleep till around 3am after a bit of a wobble of emotions, then woken up at 7:30 for obs and bloods, although the nurse brought me a cup of tea to make up for it!
Was back asleep by around 8am, and slept until 10am, and got a cup of tea, toast and a newspaper brought to me!
Struggled with my medication as usual – another panic attack, I have a feeling there’s going to be a lot of those.
Have had a [cold] shower, got dressed into jogging bottoms and a t-shirt. Room has been cleaned and bedding changed, and Sandra the lady who cleaned my room has been a star and chased up a few things for me, got me a blanket for my bed and a heater for the room, and a few bits I needed in the bathroom. Still lots to chase up, but I’m getting there.
Feeling rather isolated and anxious, and hoping these feelings will go, but I’m not sure they will. I have a feeling I will actually lose my sanity!

12:20pm – wobble time. Been told to take my piercings out, and my engagement ring off. Strangely it all upsets me. Doctor said I could have my ring on a chain round my neck, but I’ve always been told I can’t wear chains when I have a Hickman line. So leaving that on my finger until I start to retain fluid and swell up. Taking my piercings out is hard enough (had them for so long, and they are a part of me), but my ring means too much to take off unless I have to.
So my ears are now full of big holes, and nothing to fill them. I know my health is more important, but altering something that is a part of your life is hard.

16:25pm – my eyes are so heavy and my mind a bloody mess. It’s hard to see a way through all this to the end when you can’t even see the next hour. I knew this would be hard, but is it supposed to be so emotionally hard so early into it?
I’m so restless yet can’t do anything about it apart from pace up and down. I tried watching TV but there was nothing interesting on. I tried reading but I’m not seeing the words or taking anything in.
I don’t want to eat or drink, but I know I’ve got to force myself.
I haven’t stopped shaking since I came in, and am prone to bursting into tears for no reason.

HB - 9.2
White - 3.1
[Neutrophils - 2.1]
Platelets - 334

Wednesday, 19 January 2011

Day -7

So we arrived just before 2pm, and got shown to my room – not a bad size, with a small but decent quality TV (with freeview and a DVD player), a couple of chairs for visitors, on-suite/wet room (do I make it sound posh?), ‘clean’ and ‘dirty’ hatches for things coming in and out of the room, and also a separate room that people will use to come in and out of my room, where they will wash their hands and apron up before entering.

Unpacked (my 9 pairs of PJs) and put everything in its new ‘home’, and then did a lot of sitting and waiting – but we’re used to that!

I was weighed (56.2kg), had my obs done (blood pressure slightly low as always), bloods taken, had an ECG and an x-ray, did MRSA swabs, and gave ‘samples’.
Obs will be done every 4 hours – 2am, 6am, 10am, 2pm, 6pm, 10pm (approx).

Did a lot more sitting around, ate tea, and finally my first chemo came (Fludarabine) along with a blood thinning injection, plus the nurse and lots of paper work.
I got given a plan of the next 108 days – today is Day -7 [and counting?!], and asked a million and one questions – and got some answers!

10:30pm and a panic attack later [drugs related, as usual] I’ve just got the password for the internet, but I still don’t know if we have been allocated any accommodation for my visitors.
I keep asking, but now because of the time, it won’t be until tomorrow that I find out – thats if the night staff remember to pass the info onto the morning staff......

Tuesday, 11 January 2011

Where I am up to

I had an appointment on 4th January with Dr Bloor to discuss and start to finalise things. Mike came with me for support, and we both had a few questions.
My bloods/temp/blood pressure came back fine which is great, as I'd had a temperature the night before, and I was a bit worried I was going to need antibiotics, or a transfusion or something!
We sat in with Dr Bloor, and another Nurse on the Haematology/Transplant Team. Dr Bloor just asked a few questions about my last chemo, asked if I still wanted to go ahead with the transplant, but said he already knew the answer! He said there was no point discussing risks etc any further, as I have been told everything there is to know, and I had clearly made up my mind.
I told him when Shelleys appointment was (in a week), and he told me to go back the day after her appointment to finalise everything, and sign consent forms etc.

The Nurse asked Mike and I if we wanted to see the ward, and of course we agreed! I think it's better to be prepared!
She gave me a booklet that contains some useful info - info about the ward, protocols, what staff are on there, visiting times etc, diet sheet, exercises to do.
Then she took us to the ward and walked us down the corridor past the 18 rooms used for transplants.
There are 6 rooms for donor transplants, and these differ as they have high pressure air filters. To get into each of these 6 rooms people must also go through a seperate room to wash their hands.
These rooms also have 'hatches' for clean/dirty (in/out) items.

I was told in my first week there whilst I have chemo (one that isn't as strong as the usual 'BEAM) called FCM (or maybe it's FMC!) I won't be confined to my room - which is great. At least that will get me used to being there a bit better! I will be able to walk about the hospital/go to the shop etc!
Once I receive the Stem Cells is when I will be confined to my room!

Shelley had her appointment today; her blood pressure has come down, and she has lost some weight, and has been given the go ahead for the Stem Cell Harvest.
I am looking to be admitted around 19th January (I will find out for definite tomorrow), and Shelley will be going in on 25th for her Harvest. I will then get her Cells the same day, or the day after!

One down side is that I will be in the hospital for my Birthday...but's only one out of a lot more isn't it!

So thats all I can really write for now. I have a feeling the next week will pass slowly, even though I wish it would hurry up, as I just want to get in there and get this treatment started!