Tosoast for Breakfast

Wednesday, June 28, 2006

Just Graduated

Not from my MSc alas! I've not restarted that yet, but from ChemoAngels.

This is a scheme that matches you up with people - your 'angels' who send you encouraging letters and small presents each week to cheer you up whilst having treatment. My 'angels', Jo and Yvonne have been lovely, and I've had various candles, bath salts, wind chimes and such popping through the door. It's lovely to have a bit of cheer on a Radio day. There have even been a few things for Eleanor too!

So if anyone likes writing letters, and want to do something practical to help others going through similar, do consider it!

Radio Ga-Ga? Radio Head?

Chemo brain is a recognised phenomenon amongst chemotherapy patients, although it is never given as a formal side effect. However, it is a very useful excuse. I'm not sure how much longer I can carry on using it though, so I'm moving on to being Radio ga- ga.

I'm now part way through 17 Radio sessions: One a day for 3 and a bit weeks, with weekends off. And one day off for the machine to be serviced. I finish on the 19th July.

Apparently Radio appointments generally keep to time. So of course my first 3 appointments were late. At least we get free car parking right by the entrance. You have to go up to the kiosk, where the car park attendant gives you a number, then drive down to the barrier, and tell the same attendant the number he has just given you over the intercom. So each day starts with a guess the number game... the closest I've been is two out.

When I get called into the room, I lie on the couch, close my eyes, ignore the huge machines towering over me, and wonder when they are going to get some decent background music. Maybe I should suggest Music for Airports... And why don't they make the ceilings in Radio rooms more interesting? That's where the patients spend most of their treatment time looking.

I then have 10 minutes just lying down, while the Radiographers poke prod, measure, remeasure, draw on me, and exit the room promptly. There's a buzz, they come back in, move the machine to the other side and repeat the process.

So far, I have had none of the long list of possible side effects apart from beginning to feel tired again. I have bought a huge tub of E45 to counter any possible 'reddening, itching or burning of the skin', but there have been no problems so far.

I am supposed to avoid the sun in the effected area tho'. So I shan't visit Brighton beach just yet...

The Tattooed Lady

About a week ago I went for a 'simulation' session for my Radiotherapy. The wait for this session was nothing compared to the Breast Clinic or Chemotherapy, and apparently (!) the Radio sessions themselves are usually on time.

I was given yet another fashionable top to wear: this one with press studs down the front and across the shoulders... except that one of the press studs on the shoulders didn't work, so it kept on flapping open at inopportune moments.

So, I lay on the couch, a foam pyramid under my knees. My left arm was laid on arm supports above my head, and my right arm by my side. And there I lay for the next 40 minutes or so, while they poked, prodded, moved me slightly, raised and lowered and moved the couch, and measured me in great detail.

The measurements were done mainly using a metal ruler which clamped onto the machinery. Either side of the ruler were two magnetic prongs ('don't worry, they won't go into you, they'll fall off if they press too hard'). Lasers shone lights across me, and seemingly random marks were drawn on me.

Finally, I was tattooed! Two small black dots either side of my breast to show the radiographers how to position me for my treatment. No, they don't do requests; I couldn't have 'Lucy loves Paul' tattooed across my chest. And apparently the Radiotherapy doesn't give me superpowers either. Shame.

No more Chemo!!

My last chemo session occurred 3 weeks ago. This time I had fewer side effects (no stomach cramps!!!) and the feeling on the Tuesday 2 weeks later was great, not having to go to be poisoned again. However, it feeling did not last too long, as I'm still having the District Nurses coming and flushing out my line, and that day they didn't turn up. Grrrr. Much to-ing and fro-ing and several phone calls later, they finally came and flushed me on the Wednesday. However, I am still waiting for the appointment for the line to come out.

Thursday, June 08, 2006


Just before the last cycle, I saw the oncologist rather than one of his minion registrars (apologies to all those very capable registrars out there). My oncologist is very forthright, and his 'bedside' manner needs taking with several pinches of salt. When I told him about me fainting when the District Nurses were first flushing my line out he said 'lack of moral fibre'!
So the update on my condition:

I cannot be counted as 'cured' from the cancer, 'until I die of something else'. However, with my particular type, it's most likely to come back in the first five years. If it hasn't come back at all by then, the likelihood of its returning is low.

I have apparently coped very well on the trial: lots of other people on it have found it, well, a trial. I have had no infections (not even in my line, which is also unusual). The trial has been trialled before in America, although then it was dose - light rather than dose-dense (ie they gave us more) accelerated chemotherapy. However it emerged that the people who did best on the previous trial were those with the same particular cancer as myself.

So, cautious optimism. Just the Radio to go, then check ups every few months, and hope and pray it doesn't come back. And looking forward to a big party in July 2011!

Do you do massage?

For my birthday Paul bought me a voucher for a massage or facial at House of Fraser... oh lovely, I thought, a nice relaxing time whilst I'm on Chemo. Oh lovely, He thought, I've managed to get her a present she hadn't pre-guessed.

However, when I actually went for it it was far from relaxing. They were very welcoming, and gave me a form to fill in with my details, including medical history. Then they told me that they couldn't do the massage until 6 months after the treatment had finished, as it stimulated the lymphatic system.

Now this doesn't make sense. The one thing that is permanent about all this is the potential problem with lymph due to my lymph node removal. And all I was wanting was a facial and hand and head massage. (The only chance I'll get to feel what a head massage is like with no hair!)

They said they would only do it with a letter from the doctor. They did say that I could convert the voucher into products: but then I have newly acquired £200 of products that I will rarely use. Seeing how upset I was, they let me sit in the room with a glass of water, and came back with a bag full of freebies 'so I could have a bit of a pamper at home'.

When I next saw the Oncolgist, I started to tell him about the massage, and he interrupted me and said 'And they wouldn't do it. It's a load of rubbish. Of course you can have a massage' Apparently, what gets bandied about a lot is that the massage will move tiny cancer cells around your body. Which it won't. And there's no problem with the lymph either. So I am now armed with a letter from the doc giving the go ahead.

All I want is a nice relaxing time! Now to book it...