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!

Monday, 26 January 2015

Day +1460 !!

Yes, here I am, at day +1460, thats 4 years in easy terms :)
I've had a 7 month remission stint, and a 3 month stint. Unfortunately my latest scan (2 weeks ago) showed I have relapsed, so going to Christie on Thursday for another DLI.

I'm pretty sure this will be the last of my sisters cell they have got in the freezer, so lets hope this works.
I had a feeling the blighter was back, but never mind, I will keep fighting!

Tuesday, 11 February 2014

3 Years and counting.....

I am very aware I have neglected this blog.
I always have been a bit rubbish at keeping things up, especially diaries/blogs/cleaning the house etc.
The main thing is that...I am still here! (Just over 3 years since my transplant)

It's not been an easy ride. Firstly, I only managed 7 months in remission before relapsing........again (I seem to be good at that).
I started to have pain in my chest and a PET scan revealed 4 tumours.
I started on Brentuximab Vedotin (SGN 35). I had 4 treatments, 3 weeks apart, and then a scan.
The scan showed a slight improvement so my doctor (Adrian Bloor) decided to do another 4. Again, over the same period of time.
I had a PET scan in December of last year (2013) and it was good! It was actually good! Pretty much NED (No Evidence of Disease). The only down side was that I found out that 3 of the tumours had been in my Sternum. Pretty frustrating no doctor had ever told me it had spread to my bones. The extent of the tumours have pretty much destroyed the inside of my sternum which does cause me pain occasionally.
I had my 4th DLI (Donor Lymphocyte Infusion). It was the biggest infusion of Lymphocytes I have had - and Shelley - my sister and donor- had to donate again for me :)

The pain I had previously had returned occasionally, and this led to Adrian requesting another PET scan last week (My 17th PET scan!).
Results were today, and luckily the scan shows I am still clear! There is some slight colour change on the scan which shows -possibly- some sight activity, but Adrian is pleased, and says I can return in a month for blood tests, and if I do need another DLI, this would be the time to have it. It would also be the last DLI I can have. 

So there you are. That's you up to date.
Of course my personal life has had many ups and downs -as usual-, but everything in my life is good for a change :)

Thursday, 26 January 2012

1 Year

So, here we are 1 year down the line. 1 whole year today since I received my sisters Stem Cells.

How are things you ask? Well, I'm sitting here writing this at work (it's quiet this morning).
There have been many ups and down, both in my 'health' life and my 'normal' life.
23rd September 2011 was the worst day. We lost our beloved Teagan to T-Cell Lymphoma. She had been diagnosed on 15th March and given 2 months to live. She managed until the end of August with no medication, then started on a high dose of steroids as she was incontinent (the tumours were pushing on her bladder). We swapper her to a low dose of steroids, and this helped her, but she started to decline, and on 23rd September, she looked at us both and told us it was time.
We took her for a last potter on the beach, bought her a box of 20 Chicken Nuggets from McDonalds, then took her to the vets.
She went peacefully with us both sitting on the floor with her, cuddling her 'baby' (teddy).
I miss her every day, but I know she's still in the house, sitting in her spot on the sofa. RIP My gorgeous baby Teagan.


25th September saw me rather depressed with Teagans passing, and I went to pick up our 2 new additions....2 long haired Chihuahua brothers. They have settled in fantastically, and are a lovely addition to our house. November we got another 2 additions, 2 more kittens (we got 2 in August), bringing the pets total to 6! (We lost our Rabbits at the end of Summer)


The end of October saw my scan and blood tests. The start of November saw the results, and being told I was allowed on Holiday (something I've been waiting for for a very long time!)
Here are the results of the PET scan... (Left side before transplant, right side end of October)

As you can see, it's gone! I'm actually in remission!
Of course, with a transplant it's not always that simple, and it can return at any time. Luckily I can have a 'top up' of my sisters cells if they start to get low.
After the scan results I returned to work part time. Now i'm doing 4 mornings a week. It's extremely tiring, and I sleep a lot of my time off, but I'm so glad to be back doing something.

Unfortunately last night, we had to rush Little Kingsley to the vets, and he had to be put to sleep :(
His Kidneys had been failing for a while, but last night they went into the final stage, and the poisons in his body were affecting his brain.
Sleep Well my little man. We will never forget you.


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