Thursday, August 31, 2006

World's worst

World's worst Zoladex injection this morning. The nurse's hand slipped as she was sticking it in my abdomen and it came out and she had to reinsert it and OW! That flippin' hurt! I think that one's going to be an almighty bruise. I knew it wasn't going to be good when she had to fetch Ivy (Queen of the Chemosuite) to show her how this particular Zoladex injectable worked. Doesn't fill you with confidence, does it?
Plus it took her a really good feel-around to be confident enough to insert the needle to flush my portocath and that's always 'uncomfortable' i.e. it hurts. So a less than good day in the chemosuite - and considering I had to wait over an hour, even when I was there first thing, annoying. I guess I have a hard time accepting that I'm not the priority any more. Which is a good thing. Because being a priority means being really sick and I'm not anymore. So I was cheerful and accommodating and patient but there's a little bit of me that still wants to be looked after - to be the patient not just patient. But not really.
(Please don't send my cancer back just because I admitted that!!!)

T'was surgeon check-up on Tuesday too. All was well there. Well, all except some damn swelling in my hand which he didn't say was lymphoedema but I assume it actually is. It's tiny - you can barely see it but unfortunately I can feel it - my hand is stiff and I have pain down my arm. The surgeons response to this was 'yes, it can happen' - ARGH!!! TYPICAL SURGEON RESPONSE!!!! Pain and discomfort just doesn't register. I'm sitting there thinking 'please tell me what I can do to help make it better', surgeon's head is thinking 'it's only pain, it doesn't matter'. Well, it matters to me! I want my damn arm and hand back! I do not want lymphoedema as a daily reminder of all I've been through.

I'd also really like my knees and ankles not to seize up - sometimes I stand up and I can barely walk because I've stiffened up so much. I'm like a granny and I'm only 29 - this must cease!!

ALSO - the insane sweating has come back. I thought the gabapentin was working but the flushes are getting eviler again - my arms, they sweat!! Whose *arms* sweat?!? I mean, absolutely *dripping* and *running* with sweat. So much so that when I put my arm down on a piece of paper the other day, when I lifted it off again (I was writing) the paper was sodden - wet through and sticking to the desk. I am disgusting and I loathe it. I woke up 3 times last night and at 3 in the morning I had to go downstairs and outside where I lay on the concrete paving slabs outside the back door because they were cool and I just couldn't cool down....

'Nuff complaining?? Perhaps so.


Get over it girl - in fact, go and wash off the day's layer of sweat and go to bed to aquire some more.
Deep joy.

Friday, August 11, 2006

Life or death - for plants

Having let rather a collection of plants die of dehydration and green-fly munching on me over the last year or so I was desperate to manage to keep a few alive.

I think it was as a sort of celebration or affirmation of the fact I'm alive (yeah, alright, dramatic - shut up) But still, I wanted to prove a point - to enter the world of people who kept things alive.

However I recognised that my past track-record didn't paint a good picture so I didn't aim too high; I tried to be clever by picking drought-loving herbs: sage, lavender, thyme and then I cunningly put those crystal things that absorb water in the pots when I planted them.

Here are the results:

So, we have (from top to bottom) : one not-happy-but-not-dead-yet thyme, one dead sage and one mostly-dead lemon thyme, one flopping and sad-looking lavender and one caterpiller-munched sage.

I suppose I could say that more of them are alive than are dead but they don't look like the lush, green, happy plants they were when I bought them. Plants, why don't you like me?? (Because I don't water you enough - OK, shut up now plants)

Thursday, August 10, 2006


Sometimes as I lay on the radiotherapy 'bed' I used to cry. I was laying there, naked to the waist, with my arms above my head, carefully positioned using laser lights lined up with the tatoos they gave me, and I wasn't allowed to move. Everyone else had to leave the room - they had amazing mental arithmetic skills - and they'd all rush out. It's odd to be experiencing something that everyone else can't because it would harm their health. Strange, yes?

And so I would lie there - listening to the music. Because they always had CDs playing - which was so nice. But I fear I will never be able to listen to the Coldplay X&Y album without being transported back to that place; the same goes for some REM songs. And so, I would lie there, tears rolling down my face and into my ears because I couldn't move to wipe them. And I couldn't make a sound and I couldn't *cry* cry, because I couldn't move my body - not to shudder, not to shiver, not to weep.

And sometimes I would be shuddering because it was so cold in there. The machines like it cold and so I would be absolutely shaking with the cold and wishing desperately for a hot flush. I don't know how the radiographers stood it - their hands would be freezing cold as they touched me - moving me around, manipulating me into the right position. They were all, without exception, lovely to me. Another collection of lovely New Zealanders - male and female - plus some others. The names have faded but the faces stay in my memory.

So, sometimes I listen to the music that takes me back there - I don't know why. I like to torture myself and live in the past I suppose.

Wednesday, August 09, 2006

Cancer and money

I am so incredibly lucky.

I am lucky that I live in the UK and that my National Insurance contributions mean that I don't have to pay anything for medical treatment, bar £6.50/$12 per prescription.

When I was diagnosed with cancer last year - no one was asking me how I was going to pay for:
  • 8 chemotherapy treatments and medication,
  • for a portocath insertion,
  • for emergency care when I got neutropaenia,
  • for a daily District Nurse to visit to do my injections,
  • for surgery,
  • for 25 radiotherapy treatments + planning and
  • more consultations that I can remember.

While I flailed around in confusion and fear - no one was asking me for my insurance details, demanding my credit card.

They simply treated me.

I never had to make decisions about whether I could afford the treatment I needed. I didn't have to put a price on my health - on my survival. I didn't have to delay treatment because I didn't have the cash. My doctors simply decided on the best treatment plan for me and
we did it.

And it's not that I have had all of this for free: I haven't - I've paid my National Insurance contributions for 6 years and I will continue to do so for the rest of my working life. And how much better than insurance is the UK system?? Fantastically better. Because the NI that I pay goes to the Health Service whether I am sick or not. The money I pay today doesn't treat me - it treats others and when I am sick then the money of others pays for me. It's a giant care package.

I am also incredibly lucky that when I was diagnosed with cancer I had a job - a good job with a good contract that gave me 5 months sick leave on full pay plus 5 months on half-pay. I worked while I was being treated so I never got into the half-pay scenario. But I am so grateful that I had a contract that protected me from discrimination, from being made redundant or losing pay - even my pension payments continued to be made.

Today I have read tiny excerpts from 2 blogs belonging to women in the United States - one is 20, the other 25.
  • One has been diagnosed with breast cancer and is bankrupting herself trying to pay for her treatment.
  • The other may have have breast cancer but her insurance company will not pay for her to see a surgeon to have it diagnosed because she is 'too young to have breast cancer'. She is going to have to pay herself to have the lump removed and hope that the diagnosis is good.
I am so lucky.

I wish I could give the treatment experience I had to these women who are even younger than I.

It is awful to have breast cancer.
It is awful to have breast cancer when you are only 20-odd.
It is truly awful to have it and not be able to be treated in the best possible way.

I had cancer and it was awful but at least I (and my family) could say that I was being treated by a fantastic consultant who was world-known in her field; that I was having all the treaments that were recommended, when they were recommended; that I was in an excellent teaching hospital. I didn't have to play a balancing act between staying alive and not being destitute.

I've never thought the US system was a good one: it didn't serve my grammy and grampy well but now I cannot believe that it's humanely right. To put people in these sorts of dilemmas. To have to die as a result of cancer because you couldn't afford the treatment at the right time.

I am appalled.
My thoughts are with people all over the world who cannot have what I have had.

And by-the-by: 'Thank you' National Health Service for the fantastic treatment, the fantastic people and for the timely manner in which I was seen. This is why I would never leave the UK.

Monday, August 07, 2006

Hair, Boston Pops, Limos!

Final photo - this is me at the Boston Pops - also last Christmas. Shitty photo, taken by camera phone. But look! Look at the hair!! Not curling! Too short to curl. I look tres attractive, yes? Or not - one or the other.

We were sitting right by the stage - see podium behind us. This was a present from my *fantastic* brother (who always does brilliant presents) and included getting there and back in a Limo. My first time in a Limo. He's so cool. I wish I were him.

Wells Beach, Maine

This is a much nice photo of me taken at Christmas on the beach at Wells, Maine. David and I had a gorgeous night away at the Captain Lord Mansion in Kennebunkport. Bliss: go there! Immediately! Enormous beds, underfloor heating in the bathrooms, fireplace in your room, snacks (yummy), fantastic breakfast - go, I tell you! Go!

Plus in this photo you can see my Mobius Shawl, as knitted by me. It's lurvly - especially on cold December days by the ocean.

Photo fest

This is a bit of an experiment to see what the quality of this photo is...... It's taken with the smallest damn digital camera I've ever seen. Please ignore how shiny I look and the spot on my chin - I have too much chin anyway.......ignore it completely....