Tuesday, 5 July 2016

"Update" (because I am too tired to think of a better title)

So (having postponed my original appointment) tomorrow is my first annual Oncology review ie check up with the cancer doctors in the cancer clinic. This will be the first time I have had any sort of cancer check up since finishing radiotherapy last year. Apparently they will want to examine me to check for lumps that might be cancer, and find out how I am to check for symptoms of cancer, monitor any ongoing side effects of original treatment, and monitor side effects of ongoing treatment (tamoxifen). Basically, what kind of state is your body in now? So I've been thinking my way around my body and what's what at the moment, and while I am thinking about it, I thought I'd also write it down.

I definitely have Chemo Brain. When I was first diagnosed and heard others talk about Chemo Brain I thought it was just a made up thing by members of YBCN. I was wrong! It's a real thing, but there's a lot of research still to be done to fully understand it. Chemo is poison that kills cancer cells. It also kills healthy cells all over your body including your brain. Some parts of you recover quickly from chemo, like the inside of your mouth, other parts of you can take years to recover - like your brain.
Chemo definitely played havoc with my memory. I still find myself having to ask people "What's the word for..." pretty much every day. There are so many words that I seem to have just lost. But I find that once I relearn a word, I have it back for good. (Something to do with little memory connections in my brain being rebuilt according to my friend Charlotte.)
As well as a knackered memory, I also have bad concentration and bad focus which is unhelpful for everything from work, to conversations with friends, to watching tv programmes, to tidying up the house. If I ignore your text it isn't because I'm ignoring you. It's because I read it, got instantly distracted by something else (and then something else, and then something else, and then something else...), and just completely forgot. And if I do text you back, I'm probably in the process of being distracted from something else as I type and by the time I have finished my text to you, I will have completely forgotten what I was doing before. Ah well. Sorry. I just keep my fingers crossed it will improve over time - although apparently Tamoxifen doesn't help with cognitive function, and I'm on that for another 9 years!

Lady bits
Well, my internal lady bits got well and truly fried to shit by chemo. I have had no sign of a period since September 2014, after chemo number 2. Some women never lose them, some lose them for a few months, some for longer, or forever. You never know what could happen but it definitely looks now like mine are gone for good. (This means I have been in the menopause - which also does not help with brain performance.) No matter anyway, I'm having the lot chopped out later this year before any ovarian or womb cancer has opportunity to pop up too. Plus - it's actually a good thing in terms of my risk of breast cancer recurrence. Fried ovaries means less estrogen (aka cancer fuel) which is good.
(If you don't like TMI then move on to the next section now.) I have however experienced the joy of non-hormonal Tamoxifen + Copper Coil "periods". The first was the worst. In a nutshell, imagine a murder scene in the bathroom at least once an hour every hour, and pain like someone is shoving a bread knife in your stomach.

There's 2 stone more of me now than there was before I got cancer. It's a combination of reasons. I gained most of it when I was undergoing cancer treatment. Since then I have spent most of the time up until a few months ago pretty much banned from any meaningful exercise, and in addition to this, Tamoxifen makes it hard to lose weight. Then there's all the "fuck it" eating and drinking I have indulged in. So I am going to have to really put some effort in on exercise now to get back to the weight I was. Having spent so long frustrated at not being able to exercise, it finally went on for so long that I just lost the motivation and drive to go out and run. This is not helped by constantly being knackered.

This is playing on my mind a bit recently. For example, yesterday (Monday), after a pretty quiet and relaxing weekend, I had to go back to bed at 9.30am because I was simply too exhausted to carry on with the day. Ridiculous. I don't think my tiredness can be classed as fatigue as it is usually not as bad as that, but I am getting frustrated with how long it is taking to get my normal energy levels back. I was asking about it on the YBCN forum earlier and I am definitely not the only one which is  reassuring - I'm glad it is "normal"  - but I wish there was a way to just fix it. There isn't. I've been reading up on it and the advice is what you would expect - try and eat well, try and exercise, try and get good quality sleep, rest when you need to, get support from other people etc - but ultimately, it will just take as long as it takes to recover and get your pre-cancer energy levels back. Once again, menopause and Tamoxifen also add to this. (It's no wonder it's nickname is Tamoxibollocks.)

As far as I know there's no cancer in them so that's the main thing. Aside from that though they're still "under construction". I've practically lost track of all the surgeries and procedures I have had but the most recent is the first stage of nipple tattooing. Yes - if you don't class the 4 little radiotherapy markers I have, my first tattoo is a tattoo of a nipple! At this point my chemo brain has kicked in and I can't think of the word I want. It's definitely not "showbiz" but I can't for the life of me find the word I want so it'll have to do.
My first tattoo  is of a nipple! Showbiz!
Anyway. The tattooing will be done gradually over a few sessions (better to build up the colour bit by bit using pigment and get it right and natural looking, than get overenthusiastic with ink and end up with two targets on your boobs. Their words not mine.) It is done in the Micropigmentation Clinic in Burns and Plastics at the Hospital. The doctor and nurse that saw me have also referred me to another department because of my surgery scars which apparently are hypertrophic and need some attention.
Like I said though - none of this really matters as long as there isn't any cancer in there.

Two other tiny gripes...
Nails - they have still not recovered from chemo. Weak and bendy, and still not properly attached to the nail bed. But it's nothing some nail polish can't hide.
Veins - they've recovered a lot since chemo although I did manage to explode one in my hand a few months ago by knocking it. My biggest fear was lymphedema - but I keep getting lucky escapes with that.

Anyway... having been reading about the signs of secondary breast cancer in the lymph nodes, brain, lungs, bones and liver (the places breast cancer can spread to), aside from the tiredness, I don't think I have anything to worry about. And in the absence of other symptoms, the tiredness is most likely just cancer treatment/ menopause/ tamoxibollocks....


If you have read this far... thank you!  I look forward to the day when I will stop being a cancer bore. But for now, I'll try and make up for my waffle with some cute pictures of my dog.

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