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, 29 March 2010

26th - 29th March

I spoke to the consultant at the Royal Free on Friday (26th March) - no update - we are STILL waiting for funding from my local PCT.

I also had a meeting with the local Central Advocacy Services on Friday - and i'm hoping they can get in contact with my local PCT and find out whats happening. They agree that the time i've been waiting is too long, and not acceptable. So lets see if we get anywhere!

I had my second dose of Vinblastine today. Once again 4 attempts to get the cannula in - all very painful, and Dr's and Nurses said it would be better if i had a central line, so they have arranged for that to be done on 9th April - a few days before chemotherapy.

It will be my second central line, and i'm quite looking forwards to not being stuck by so many needles every time I have to go to hospital!

I'm in some discomfort with my neck, and I spoke to the Dr today at Christies who said it *could* be where the tumours are shrinking, and coming 'unstuck' from tissues that surround them, but other than that, he didn't offer any other explanation!

Thats about all there is to update for now....!

Friday, 12 March 2010

A small update....

I went down to the Christie today, and saw one of the main doctors. (Kim)
She agreed it's time they intervened, and they have decided I will be having Vinblastine every 2 weeks, until I get accepted on the trial - then I will stop, and have to be off chemo for a month before I start the trial.
I start next Wednesday.
I've had this drug before, 8 years ago when I first had chemo, but never on it's own.
I've also been put onto steroids again.

I've got multiple new tumours in my neck (both above and below the original ones), and a new one under my arm, just below the original one.
The original one under my arm has grown.
Not sure about the ones in my chest, as they didn't do an x-ray.

Wednesday, 10 March 2010

Update, but not much to update...

So, where do I start with this one?
On Monday had a good day! I went out with a friend to a dog rescue to take some food, then we nipped to Ikea for some lunch and a mooch around.

I then got home, and was sat chatting with Chris on the internet when the phone rang.
It was Fran (Lymphoma Nurse from the Royal Free) with news from my local PCT.
Well, I say news, although i'm not actually sure it is....
The PCT met last Thursday (4th March). Fran called to say that the PCT haven't made a decision, because they need more information. Once they have said information, they will meet again to [try] and make a decision.
What information do they need I hear you ask......I wish I could tell you. I wish the Royal Free could tell me, but in this day and age, the NHS uses snail mail, even when it involves peoples lives.

Chris spoke to Fran yesterday (9th March) with some questions, but unfortunately, she couldn't really answer any. She passed a message onto the consultant down there who phoned Chris today. But he couldn't really answer any questions either. It seems the PCT are like a private little group, who won't disclose anything to anyone - even people who need to know.

So we are no closer about knowing how much longer I will actually have to wait. It could be a few weeks, it could be another 6 till they meet.

I phoned my Lymphoma Nurse at the Christie Hospital yesterday, and today she got one of the consultants to phone me. She said she has read the e-mails from the Royal Free (ohhh, e-mail!), and will write a letter to my local PCT if it will help speed things up (although I am doubtful).
I also asked if I could go down and see someone, as I feel my symptoms have got worse. She also suggested that they may need to 'intervene', and perhaps give me some treatment whilst waiting for a decision to be made by the PCT.

Well, I shall see what Friday brings - if anything.

Wednesday, 3 March 2010

Getting up to date..... (LONG!)

I've debated with myself if I should post this here or not, seeing as I don't actually know who reads all my entries. Then I thought ahh well, it's my blog, I may aswell post it, and then people will know whats been going on.

Just under 2 weeks ago I got a letter from Christies. Now - this letter wasn't exactly to me - it was to a Healthcare company, and i'd asked my doctors to write a report about my diagnosis for the company so I can hopefully get some help with costs of travelling, and perhaps some help at home.
I had phoned the Lymphoma Nurse, and she said I could send the forms to her, and she would pass them on - which she did.

I then received a letter, addressed to the healthcare company, but I had been CC'd in on the letter - fair enough you may say, of course you want to know whats being said about you!

Yep, fair enough, apart from what was in the letter. Perhaps it was the way I interpreted what it said?.....
Now I've always been a positive person, believing I'm going to get better, hoping my treatment will be soon, and will help the cancer even though it's grown so much......then I got this letter and it felt like my world had collapsed around me.

A few excerpts from it.....

"She remains PET positive prior to planned autologous transplantation, which is a poor prognosis scenario."

"However the long term outlook here is very uncertain, we are certainly in uncharted territory"

Fine, you might think.......she's not had a good diagnosis!

But apart from the fact the doctors had never spoken like this to me before (apart from the fact i'm PET positive), and the fact the letter wasn't even technically 'to' me made it worse.

I went to my Mums and broke down, and she called up my Lymphoma nurse. The nurse said she had seen the letter and was disgusted, and that if I felt the way I did, then they weren't doing their jobs properly. She went off and spoke with one of the consultants, who said they would phone me.

One of the consultants did phone me - not that I was overly happy with what was said - but am I ever?!

She first told me I had said I wanted to be CC'd into the letter (apparently I'd said it to the Dr who wrote it) - I told her I hadn't even spoken to the doctor who wrote it, to which she replied "Yes, I know". Confused? Me too.

She didn't deny or confirm anything (I don't think they could anyway tbh - as I've not had the latest treatment yet!), but what she said is that my future is uncertain, but they certainly haven't given up on me, but the more treatment Lymphoma has, the harder it is to get rid of.

I spoke to my Psychologist the next day, and as always she helped me to rationalise my thoughts. I did feel easier after speaking to a few people who are close to me, but of course the bad thoughts like to creep in!

On another note - I've had my pain killers changed to Tramadol, which don't seem to make me drowsy like the co-codamol did (ok, drowsy is the wrong word....more like comatosed! I also asked for sleeping tablets, to which my doctor obliged - and they have been helping me actually get more than 2-4 hours sleep a night, but side effects include a banging headache the next morning!

Today is 6 weeks since my appointment at the Royal Free Hospital. I phoned the Lymphoma Nurse up, and they still haven't heard anything. It's getting a bit ridiculous now - as always I feel forgotton, or like it's going to be bad news and I can't have the treatment. The nurse said she will try and chase it up tomorrow, and hopefully I will hear from her - but as always (again!) even though my fingers are crossed, I doubt there will be any news!