I wanted to write a ‘half term report’ for my chemotherapy as I’ve now completed three of the six treatments, to document the impact so far. I then realised that it’s actually more like half time in a football match, one that you know is going to extra time (radiotherapy) and then penalties (a mastectomy). So here’s my half time match analysis, where I go through each aspect of the first half and try and prepare myself for the second 45 minutes.
I wrote in my last blog about my hair starting to fall out on day 18 of chemo. It’s now day 59 and I lose hundreds of hairs every day still. I’m very thin on top and need my side parting to comb over what I can to cover up my scalp. I’m very sparse around the edges and my ‘sideburns’ fell out weeks ago.
I’m not actually supposed to wash my hair more than once or twice a week, but with it being so short and the fact that I wake up with it all over the place I need to wash it gently in the shower every day. I’ve been using baby shampoo but read recently that this is too alkaline so am switching to Simple products instead. Ideally I should be avoiding parabens wherever possible, and my lovely hairdresser (and great friend) Dawn’s hairdressers sells Organic products which have no nasties in them, so I am trying their shampoo too. If you’re local to Felpham then you can buy them in The Glasshouse salon next to the Esso petrol station!
I have two wigs on standby, the one I bought originally and now I have an NHS one too, nicknamed ‘Boris’ by my friend Stacey as she thought it looked like a certain politician when it was sitting in the box! I wish I wasn’t bothered about losing it as it would save the time and discomfort that the cold cap causes.
I don’t think I’m vain to want to keep my hair; it’s more about looking ‘normal’ and not wanting people to look at me and know I’ve got cancer because I’m completely bald, or wearing a headscarf. I want to be treated normally by everyone, and this is part of that desire. I know that if I’m wearing a wig then strangers won’t look twice at me, which is what I want.
I do miss being peroxide blonde though, and am gutted that I’m supposed to wait at least six months after chemo has finished before I can bleach it again. We shall see how impatient I get, and whether it feels strong enough to do earlier. Dawn thinks it should be fine to bleach the tips, even if we can’t risk doing the whole head.
The good news on the hair front is that it’s disappearing on other parts of my body. I don’t need to shave my legs or armpits, or pluck the stray hairs which appear on my chin and moustache! My eyebrows and eyelashes are still mainly intact, although I think a few have fallen out.
Alongside the hair loss, the biggest impact of chemo is that I’m a stone heavier than I was in the summer. My usual healthy fitness and nutrition has gone right out of the window and I’m a cake-eating, pie-munching sloth most of the time.
I have to get weighed for each chemo cycle and am putting on around two kilos every three weeks! The nurse is delighted, because it means that I’ve got plenty of fat stores in case I get ill, and it means I’m stronger and able to fight infections. It gets me down though, and even though I know I will lose the excess weight, it just doesn’t seem like a high priority at the moment. It’s just annoying to be back in my ‘fat clothes’ again!
My sister pointed out that one of the side effects of the the anti-sickness steroids I take is an increased appetite, so at least I have an excuse! It doesn’t account for all the times that I eat when I’m not actually hungry though! I graze all day, eating things which I never usually do, like crisps and biscuits.
It’s a shame that I’ve stopped exercising too, as I just don’t have the energy. I’m not sure when I will get my mojo back either, as radiotherapy can be exhausting, and then after all that I need a major operation which will require me to put my feet up for a while.
My PICC line
As chemotherapy is delivered intravenously, it was recommended that I get a permanent line into a vein to save me needing to be cannulated every time. This means that any drugs can be delivered without needles, and bloods can be taken without needing to puncture my skin each time.
What this involves is a thin plastic tube being inserted into a vein in my upper arm, and fed through to my heart. It was done under surgical conditions using some really clever technology to check that the tube was put into the right place. It’s covered with a dressing and then with fabric tubigrip to keep the dirt out. I tend to cut up old tights rather than using the horrible white stuff that the hospital gives me.
It’s a pain though, for various reasons. The dressings need to be changed weekly, and the line ‘flushed’ with saline to check that it’s still working and not blocked. We were hoping that my sister, who’s a nurse, could do this, but it’s been very tricky to organise. She needs to be observed doing it, to make sure she’s competent, which makes complete sense. However, not only does each hospital do it differently (my main one compared to my local one, where I get my weekly dressing changes) but each nurse who trained her does things in a different order! Imagine doing your driving test where one instructor adopts a ‘manoeuvre, signal, mirror’ approach rather than the ‘mirror, signal, manoeuvre’ that you’ve learned to do. It was very stressful for her but last week, finally, she was signed off and can now attend to me herself at a time to suit us both, and without the long waiting times in the hospital. It’s such a relief and I’m so grateful for her determination to become authorised.
I also have to wear a plastic sleeve when I shower, and a relaxing bath is impossible. I’ve only had two baths since it was fitted a couple of months ago, as I can’t submerge my arm, so it really isn’t relaxing. I used to love a long, hot bath, reading a book or just chilling, and I can’t wait to get the PICC line removed at the end of my treatment so that I can treat myself to something which I used to take for granted.
I feel like I’m permanently jetlagged at the moment and my eyes often hurt with the tiredness. I have worked a lot of half days, attending important meetings in the morning and then taking a nap in the afternoon, or even just resting with my feet up. I’m still not sleeping very well, which doesn’t help, although even if I was getting a good seven hours every night then I think that the chemo would still make me tired.
I will try and pull my socks up and join everyone else who goes on a health kick in January. It’s a good time of the year to change your habits and although I will still be in chemo hell, I will make an effort to be ‘good’. I do want to get my fitness back so will set myself some exercise targets, even if they aren’t as hardcore as they used to be. One of my first blogs was about fitness challenges for all abilities so I will take my own advice and pick one! In Mariella Frostrup’s TV programme about the menopause they talked about the need for high impact exercise for bone health, with Zumba being as good as running for this, so I will take a few classes to start moving again.
Exercise is so good for the mind too, and it gives you more energy, so hopefully my full time report will show that I’ve made some improvements on this aspect of my life.
It’s time for me to nag again! Please check yourself regularly and if you notice any changes, however minor, please go and see your doctor to make sure it’s not serious. Don’t put it off as early diagnosis is vital to give you the best chance of recovery.
I’m really pleased that my nails are still looking good! The bad news is that the final three chemo cycles are using a different drug which is supposed to have a major impact on finger and toenails. They often get ridges and some of my friends who’ve been through have lost nails completely! I’ve been told that black nail varnish can help, so I’m having my fingers and toes painted in preparation. It’s such a shame though as I usually go for bright glittery nails at Christmas! My nail technician is a genius though and I’m sure we can come up with a festive design with a black background… In the meantime though, here are my current nails, which are still looking good two weeks later.
If you want to see some of the extraordinary designs that Miss Jo’s Nails can create then here is her Facebook page for inspiration!
I’ve left this one until the end as it’s the hardest to talk about. The treatment definitely affects your mind, and ‘chemo brain’ is a real thing. Chemotherapy is known to affect cognitive ability, although it’s sometimes difficult to differentiate it from the senior moments which are an everyday occurrence for me! My brain seems to go to mush sometimes, where I struggle to remember something or just can’t focus.
The other aspect of the treatment is its effect on mental health. Although I am very positive and ‘normal’ a lot of the time, I definitely dip in the middle of each cycle. The side effects get me down when I’m feeling ill and I just want to get off this cancer conveyor belt. I yearn for a normal life which doesn’t include hospital appointments, side effects and missing out on things I want to do. I want to be running along the seafront at 6am like I used to, I want to fit in my old clothes, and I want to be able to plan days out, gigs and holidays like everyone else can. It’s really shit.
I get anxious and stressed over really silly things. I get crotchety when I’m tired and my family feel the brunt of it, as they are the ones who are closest to me. I also had to stop taking HRT, which can help with some of these peri-menopausal symptoms, as the hormones are not good for my particular type of cancer.
It’s hard to escape cancer as well, as it’s on your mind for most of the time. I’ve just been away for the weekend and had the best time, a lot of it spent talking and laughing about other things, which was a real boost. I’ve begun to dread each chemo day, when I know I’m going to come home feeling poorly and knackered, needing to take medications which feel like a bushtucker eating trial as I’m such a baby. I honestly don’t know how they eat those fish eyes and live witchety grubs, as I can’t even manage the tiniest of tablets or 10ml of medicine without gagging!
Half time report
I don’t want to make it sound like I’m feeling sorry for myself or that I’m not positive, because the summary of my half time report is that I’m very grateful for the following :
- I’ve still got enough hair to look mainly normal
- My nails look good
- I laugh loads and make lots of cancer jokes!
- My friends and family are bloody awesome
- I’m still working enough to pay the mortgage
- I haven’t caught any bugs and ended up in hospital like so many others do
- I’m still positive, most of the time
- My next chemo is on December 27th so I should be able to celebrate Christmas as normal
Thank you for reading this post, and for all the positive feedback my blog is getting. Although I’m doing it to raise awareness of what cancer patients go through, and to make it a normal thing to talk about, it’s also a useful diary for me to remember how I’m feeling at each stage.
If you want to read more about my ‘journey’ (which is such a horrible term!) then here are the previous blogs :
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