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!

Wednesday, 6 January 2010

June 2009 - Results and treatment plan....

1st June was results day.
I was told I had stage 1 Hodgkins Disease, with tumours in my chest (same place as last time), and small tumours in my neck. The one in my chest was measured at about 10x6cm - smaller than last time.
Bone marrow biopsy was planned, and chemo was to start on 16th June.
I was also told I needed another PET CT scan, and an ultra-sound scan on the swelling on my collar bone - to check for blood clots.
I was also started on daily warferin injections, just incase there was any blood clots.
After a few injections by the nurse, I learnt to do the warfarin injections myself.

The long term plan is 6 sessions of chemo, then to aim for a stem cell transplant.

4th June was 'Bone Marrow Biopsy' day. I knew what to expect, as I had one years ago, but still asked to be sedated, as I know it hurts!
The took 3 samples of bone marrow....
The 1st was an 'aspiration' (they take a liquid form of bone marrow).
The 2nd was a 'Trephine' (they take a solid piece of bone marrow, about 2cm long).
And the 3rd 'Cytogenic' (when they take the fluid, like in the aspiration, but this one studies the abnormalities in chromosomes).

Ultra Sound was on 5th June - luckily no blood clots, but the tumours in my neck were apparently pressing on my veins, which could be causing the swelling.

15th June was PET scan day.
The week before I had 5" cut off my long hair, as I was told my hair will all fall out (again).

Feeling Numb at this point, more than anything. I didn't feel upset or worried, just wanted to get the next week over, and find out what side effects I would suffer with from the Chemo.

16th June was chemo day.... I was to have a chemotherapy called 'GDCVP'.
My appointment was at 9am, and I arrived on time, and no one at the reception desk knew I was supposed to be there.........she went to see the nurses, who luckily were expecting me.
By 9:30 we were still sitting in the waiting area.....hadn't even had any bloods taken.
My Mum asked what was going on, and they decided to put me in a room. They said my chemo hadn't arrived yet, and would be there between 10:30 and 10:45.......
it arrived at 12 noon.
I started having it, and had a few reactions, so had to have the drugs given slower, and I slept for about an hour, they made me feel so bad. Another drug made me feel like I had a cold, my nose was blocked.
We left the hospital at 2:45, with a bag full of drugs.
I Got home and went straight to bed as I felt so weak.
I got up about 6pm, and have had to take an anti-sickness pill, and already fought away a massive sickness urge.

18th June - Not doing so well. I have some psychological problems with taking tablets, and it's really taking its toll on me.
Got very depressed last night and this morning, spent a lot of time crying. Just about managing to eat and drink, but lost 5lbs already.
The anti-sickness is only just taking the egde off, my whole body is aching, and i'm just so exhausted.

To top it off, the hospital phoned yesterday and said they won't give me a sick note, as i'm 'only' an outpatient.
My Mum phoned my GP for me, and spoke to a receptionist, who was really nice and she has gotten me a sick note for a month. She says I do need to see my GP to get a longer one though.

28th June - It's nearly 2 weeks since my 1st chemo....not been coping too well.
The first week was bad, I was very depressed, and struggled to take my tablets.
This week, the first few days were ok, I felt quite good, and i've had a day out in Clitheroe, and today my Mum took me to Southport for my lunch.

I've seen a palliative care nurse, who was absolutely lovely, and has answered a lot of my questions, and she's going to try and help me with a few issues. She's suggested I ask for my steroids to be changed to dexamethasone, as it's less tablets, and they don't cause depression like prednislone do.
She's also suggested a sryinge drive for my anti-sicknes,, instead of more tablets.

She's also signing me up to day care once a week at the local hospice, which I am looking forward to.
I will get transport there & back, get a meal, and can do whatever I want while i'm there....they do massages, have a hair dresser, have beautiful gardens.......and she says there are some ladies who are a scream, and judging by my sense of humour, we should get on.
The nurse is also going to visit me the week I have my chemo, when i'm generally at my lowest, which is nice.
She's also going to try and get me some sort of 'hypnotherapy' to help with taking my tablets, and it's such a struggle, it takes me hours - there is a lady who does it at the hospice.

I'm at hospital tomorrow for review - they check bloods, ask questions, I can ask questions etc, and sometimes they do an x-ray to check things.
I also think my hair is starting to fall out.....had a few clumps today, but nothing major....oh well.
One more week till next chemo....great

29th June - Check-up at Christies.
Think the doc was annoyed with all my questions!!
I got the prednislone changed to Dexamethasone - which is less tablets, and also will *hopefully* not make me as depressed.
I also asked for a central or picc line, and i'm allowed a PICC Line, which will be fitted shortly.

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