Joke!

Eleanor has just discovered jokes. This is one of her latest:

How does a parent go 'AUK'?

With a spoon!

We're expecting her first booking for stand up soon.

Race for Life

This year I will be 'running' the Race for Life in June. For 'running' read 'walking steadily' 'short spurts of animated activity' and 'running past the finish line'. Race for Life raises money for Cancer Research UK. I'm all for anything that can be done to attack cancer. So anyone who wants to sponsor me, visit my fundraising page:
If you want an evening out and to cheer me on/have a laugh, come along. Or if you're feeling energetic, join me!

A Funny Thing Happened on the Way to the Forum

Soon after diagnosis I discovered the Breast Cancer Care website and more specifically the chat forums . The support I have got from there has been brilliant, and especially from an unofficial chat site that has arisen from it. I have met with one other user whilst have radio and other people have had met up at picnics with champagne (Tho' I've not managed to make any of the meets).

It's good to have the chance to 'talk' to other women who have been here, done this, and got through the other side. To find out more, and to have a laugh. And there are some good games on the unofficial site, too.

I've just discovered these comic strips via the chat on the BCC website. I've ordered the book...

Meet NED

In the middle of October we went back for the first of my check-ups. And he doesn't want to see me for another 6 months...

NED is No Evidence of Disease... also known as NAD (No Abnormalities Discovered)or various other abbreviations..

Swimming!

At last I can go swimming! Eleanor goes swimming every Saturday (though recently lots has been happening on Saturdays, and her normal pool is closed for refurbishment). She had quite a long break when neither Paul nor I could go in the pool, then first Paul and now I can both go in with her...

My skin is now totally back to normal, having taken a week (rather than the '2 or 3 days' to heal. I just need to build up that energy to be able to do a few lengths. Eleanor seems to find my swimming under water very funny...

More Treatment...

I spent an hour today lying on a couch with tinkly music playing, being gently repositioned and the couch moved up and down... no, not more Radio... today I finally had the facial and head massage that Paul bought me for my birthday. There are definite advantages to being off sick (at least part of the time!)

mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm

Almost at the end....

Officially, all my treatment is over! I finished Radio last Wednesday with 2 'booster' doses (different room, machine comes right down on top of you, blast to the scar area. The actual Radiotherapy wasn't bad at all. There was one day, when Paul and Eleanor had accompanied me in and I'd shown the room to them, when the machine broke down on me. And no, neither P nor E did anything to it. I was lying there, all the staff had exited the room, and the first bzzzzzz came... then nothing. After an ominous pause, the staff came in and looked puzzled. Another long pause, then they told me I could relax my arm down. Then after a while they covered me up, saying the technicians might come in. Finally they sent me back outside, and I waited half an hour, then continued my session. It seemed to go OK, but was a bit worrying!

The same day that my Radio finished, I also finally had my line out. There weren't any beds available, so they put me in a private room (the food was no better tho'). It was taken out under local anaesthetic, and Paul was able to be there... so I didn't need a sedative this time. It is great not having the line sticking out of me any more. And no more waiting in for the District Nurses to come round.

I was warned that after the treatment finished the Radio would continue to work for 2 to 3 weeks (I'd continue cooking, as it were). And at the beginning of this week, my skin, which had been quite red, began to break down. This is a process known as moist desquamation. If that sounds revolting, that's because it is.

I went back to the hospital just under a week after thinking I wouldn't have to go near the place for a couple of months. There they had a look at me and gave me some Gentian Violet to daub on, and told me to expose the area to air as much as possible.
Now there's only so much you can go round topless, especially when still working. Plus the only way to comfortably get air to the burn is to lie on my back. So I have been doing a fair bit of that.

Gentian Violet is a dye... so now I have turned purple, Paul has purple fingers (the gloves they gave didn't fit very well) and various sheets and clothes and the like have purple blotches too.

Things did not seem to be improving greatly, so I went back to the hospital, where they have given me some Flamazine cream. And told me to carry on getting as much air as possible. Fortunately I'm not in work for the next week or so, as I'm not sure how this would fit in with the Clothing Policy....

Escapologist!

A while ago Eleanor graduated from cot to bed. Nervous at the thought of her on the stairs (steep and twisting) in the middle of the night, we decided to try and fit our stairgate at the top of the stairs. It wouldn't fix to the newel post. Nor would it fit in her doorway. So the first night, we fixed her door shut with a luggage strap, and determined to buy a cabin hook for the door.
So we put her to bed, and went outside into the garden with the monitor. Silence.
A little while later I went inside, to find Eleanor coming out of the bathroom downstairs, looking forlorn and saying 'I was looking for you'. I took her upstairs and asked her how she'd got out... and she'd managed to squeeze through a tiny gap. She now wakes up in the morning and stands at her door rattling it and saying 'Mummy Daddy is it wake time yet?'

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.

Oncologist

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...