12 down and 5 to go – one week today I will have my last radiotherapy session – in other words I will FINALLY finish treatment!

So far so good with the radiotherapy. I must admit that I feared the worst with all the information I got about possible side effects. However, my throat is bearing up quite well. It is uncomfortable when I swallow – it feels a bit like someone has stuck a cactus down there which all the food has to edge past, but as long as I stick to soft food and plenty of fluid to wash it down, it is fine.  I haven’t had any skin problems at all so far. My white blood cell count is still low however, so I’m still having to take precautions to avoid infection and I do have sore lungs if I take deep breaths, or when I am outside in the subzero temperatures we are having at the moment, but that is really only a problem when I am running.

Ah yes, I AM still running, but it is proving to be more of a struggle than I had anticipated! In the 4 weeks between finishing chemo and starting radiotherapy my running form had improved quite remarkably. My speed had gradually decreased during the 4 months of chemo to an average of about 60 seconds per km slower than “normal”, but by the time I started radiotherapy had improved to only about 20-30 seconds slower than “normal”. Plus I had stepped up the distance I was able to run too and could manage 12 km in one go.  Now, however, I am back to AT LEAST 60 seconds slower again, maybe even worse, and I struggle through maximum 5 km. Not only that, but my legs are as sore the day after as if I had run 28 km in my pre-chemo days. I am finding this very frustrating! I don’t feel ill like I did when I was having chemo so it doesn’t logically make sense to me that I am struggling so much.  I’m has stubborn as ever, though, so I’m still running 3 times a week as best I can and supplementing with cycling or the cross trainer which aren’t so hard on my body PLUS still weight training 3 times a week. Fingers crossed that I will be able to bounce back just as quickly again when this is over.

While the side-effects of the radiotherapy haven’t hit me has hard as I was fearing, I am still struggling with the peripheral neuropathy in my right hand which came on after my last chemo treatment. Rather than improving, this got worse, though seems to have stabilised now. It bothers me most at night when I usually wake up about 3 times with a pain in my hand so bad that it is very difficult for me to lie still, and painkillers like paracetamol or ibuprofen have absolutely no effect at all. During the day it is easier to distract myself from the pain, but my thumb is now completely numb and my index and middle fingers partially, making it difficult to do fiddly things like buttons or writing with a pen.  I’ve now started going to an acupuncturist to see if he can help me with this, since conventional medicine apparently can’t help. After the first session I actually had one good night where I didn’t have pain, before reverting to normal, so we’ll see if it helps more if I continue. As if that wasn’t enough, both my hands have become swollen over the last week or so. I have no idea if this is connected to the neuropathy or if it is a side-effect of the radiotherapy, but another thing on my list of things to discuss with the Doctor next week!

But hey, only a week to go and then at least the treatment is over and that cheers me more than I can say!

Now with tattoos!

November 16, 2010

Today I had my second radiotherapy treatment and so far so good. It is a bit of a different experience than chemo – very non-invasive and space-agey. I particularly like that it doesn’t involve needles – or at least not after you have the tattoos…..

Last Monday I was in to be scanned so they could plan the radiotherapy – this involves tattooing little marks on me so that they can line me up precisely with the machine so that it zaps me in exactly the same places each time – apparently with 1mm precision which is fairly impressive. Luckily the marks are tiny – basically it looks like someone has made little dots with a biro – and I have so many moles already I’m not sure anyone will ever notice them (except that they are blue!).

Hubbie came with me for the first zap yesterday when I also had a meeting where they could tell me what was about to happen, about the lovely side-effects I can expect and how to deal with them etc. It is invaluable having him there for these meetings so that when things start happening to my body I can discuss with him rather than just panicking! He was also allowed to come into the room and see Mr. Machine. He is impressive! (not my hubbie – Mr. Machine! – though my hubbie is fairly impressive too!).  

Then it was down to business. They start by spending quite a bit of time lining me up – the machine has lasers which they line up with my tattoos so that I am lying exactly right. Then they all leave the room and I’m left alone with Mr. Machine. I have to lie completely still while he does his stuff – he rotates around me going “bzzzzzz” for 20 seconds at a time – I think it is 13 times in all. You don’t feel a thing. Actually I really don’t feel a thing at all in my arms – I already have a problem with my hand sleeping but I have to lie with my arms above my head so my arms go completely numb which is really uncomfortable.

They suggested I bring my kids in to see what they are doing to me so I took them with me today and I was totally impressed with how sweet they were with them. While I was being lined up they explained to them exactly what they were doing and while I was being zapped they got to sit out in the control room and saw my x-rays (they take two x-rays before they start each time) and could watch on the camera while Mr. Machine did his thing. The main reason for taking them was to demystify what they are doing to me, but I think most people would probably find it quite interesting! (though I probably won’t invite any more of you along since I am naked from the waist up while it happens – for the same reason I won’t be posting any photos you will be please to know!).

Apparently it is going to take about a week before the side-effects start to kick in, so I’m enjoying the calm before the storm. The only thing I have to be careful with just now is not to use perfumed products on the zapped areas, so I’ve put away all my lovely smellies and procured some boring perfume free stuff to use in the meantime. I am actually not supposed to use deodorant at all, but this is a bit of a bad combi with hot flushes so I’m trying with a perfume-free one and crossing my fingers!

Life after chemo!

November 7, 2010

Well I managed 14 whole days without a visit to the hospital after my last chemo on 18 October – I think that was a record since the middle of May! It didn’t last long though and this week I was at the hospital Tuesday, Wednesday, Thursday AND Friday and I have to go again tomorrow. OK Tuesday probably doesn’t count because that was for my Look Good Feel Better course. On Wednesday I had to go for blood tests in connection with the preparation for the radiotherapy (yes, that was the end of “no needle” break too!). Thursday I had to go for a CT scan. I’m actually a bit confused about that one – I thought I wasn’t going to have another scan until after completion of the radiotherapy and I haven’t any appointments scheduled to get the results, but I just assume they know what they are doing. When I got the letter from the hospital, the appointment was for 19:10 in the evening AND I had to fast for 6 hours before – aargh! However they phoned the day before and asked if I could come at 4pm instead which was MUCH better! On Friday I had appointments to get the mould made for the radiotherapy and for another CT scan to plan where they need to zap me. However when I got there it turned out that hadn’t known about the CT scan the day before until they looked in my file that morning and apparently you can’t be injected with the IV contrast medium again within 48 hours (or presumably I would be so radioactive I would light up!) so that scan had to be postponed until Monday….

They did make the mould though, which was quite an interesting experience. They use a big plastic bag – I think it was 1m x 1m – full of what looks like tiny plastic balls which is connected to an air pump. I had to lie on the bag in the position that I will be in to get the radiotherapy i.e. with my head tipped back and my arms above my head (not very comfortable!) and then they moulded the balls around my sides, shoulders, head and arms. When she put air in the bag it became fixed in that shape – but she could release the air to adjust it as necessary. In the end she had a made a mould that is tight enough that when I lie in it I will automatically lie in exactly the same position.

Other than the hospital visits, though, it has been a good week. My energy is coming back and I’m enjoying my food again (as long as that lasts- because I’ll be getting the radiotherapy on my neck they predict I’ll have problems eating again then). I’m still having problems with my hand (peripheral neuropathy), but have spoken to the Doctor and there isn’t really anything that can be done about it, since the only medication that might help has side-effects that I’m not prepared to risk. But the combination of the pain in my hand and my hot flushes means I don’t sleep very well!

I also started doing a little bit of work again from this week – not a lot, but the equivalent of a couple of days a week spread out over the whole week. That has been great. Cancer had completely taken over my life for the last 4-5 months, but when I’m working I feel like myself again and it has been good for my confidence to find out that I haven’t forgotten everything!

This coming week will be a bit of a test as my hubbie is heading off to Berlin for a conference for the week so I’ll have to pull myself together and behave like a grown-up again!

OK, maybe I should leave it to others to judge whether I am looking good, but I’m definitely feeling better! However what I’m actually referring to is a course I was on yesterday. It was a skincare and makeup course run by a charity called “Look Good Feel Better” which is supported by the cosmetics industry. What they do is organise these courses for women with cancer to show them how to disguise some of the side-effects cancer treatment has on the appearance (missing eyebrows and eyelashes, dry skin etc.).

So we were 15 women gathered yesterday for 2 hours where we were shown how to apply the skincare products and makeup that we got in our goody-bags, which we were allowed to bring home afterwards. And I’m not talking about samples here, but full-sized products from good quality cosmetic companies! It was a lot of fun – it isn’t often as an adult that you “play” with make-up. We had a laugh and we chatted a lot about issues relating to losing our hair, our eyebrows, our lashes etc.  And for a couple of hours we were spoiled, not just with the products we were given, but also plied with tea/coffee/biscuits/fruit which they served us with.

I really think this is a great concept. After all it is a total bummer when you get cancer that not only do you have all the health related stuff going on, but that you have to suffer the indignities related to your appearance. It’s not just the hair, but the eyebrows go too (I usually have thick dark eyebrows and now I have pale tufts) and the eyelashes (all my bottom lashes are gone and on the top I have a few sparse stumpy lashes left). Not only that, but a lot of the time I’ve frankly been looking pretty grey and colourless.

My reaction has been to make a bigger effort than usual with my appearance. I’ve always worn makeup when I’ve been at work, but otherwise have been quite relaxed about my appearance. However for the last few months I have rarely left the house without some makeup – in particular eye makeup to deal with the missing brows and lashes, but most importantly blusher to cheer up my grey complexion and the fact that my face looks totally colourless when I don’t have any hair.

It obviously works! A lot of people have commented on how well I’m looking – usually sounding very surprised when they say it. I’ve also had a few comments to the effect that it is strange that I haven’t lost my eyebrows – just shows what you can do with an eyebrow pencil.  

But the best thing is that it makes me feel better when I make an effort with my appearance, so thanks to the Look Good Feel Better people for the course yesterday. And to any readers who are also living with cancer I can definitely recommend going on one of these courses – apparently they are active in 20 countries so there should be a chance that there is one near you.