Well, it’s all been happening here at Project Lumpy in the couple of weeks since my last post. As my second week after chemo progressed I got stronger by the day, and the side effects lessened. This glorious weather has meant I’ve been out and about for walks, the odd cuppa and cinema trip. I measured my progress by the fact that I wanted to drink tea again. Delicious it is too. Some lovely visits from family and friends, and some amazing gifts (thank you!). Then in to the third week, all going swimmingly, and I even made it to a spin class – although I didn’t push as hard as I usually would, but it felt really good.
It is quite odd waking up everyday thinking “I wonder how I feel today, what side effects might surprise me?” So far: nausea, constipation, change to taste, fatigue, no energy, low mood, hair loss, achy legs, headache, dizziness, acid reflux, burping, itchy scalp, painful glands and chemo brain. Fortunately I haven’t a day with all of these delights at once.
Chemo brain is real. For example, I realised about ten days after my chemotherapy session that I had no idea where I’d parked my car. Fortunately, a wander around the side streets and I found it. As anyone who has spoken to me in the last couple of weeks will attest, my conversational skills became a little stilted – it’s like Ethel from Eastenders has taken up residence in my brain. But if I start asking “has anyone seen my Willy” then we know I’m really in trouble….
I’m learning to pace myself (not easy when I’m used to a pretty full life), and take breaks when I need them, but also to get out and do things that will make me smile. I also seem to be taking an inordinate number of pictures of the cat…
Thank you to all of you who alerted me to Victoria Derbyshire’s brave unveiling of her new hair under her wig. Her new hair looks fabulous and it’s the sort of positive story I relish. I’m really glad she was honest about just how tough losing hair is for some people. A couple of weeks ago I met a woman who had lost all her hair, including eyebrows and eyelashes, through chemotherapy. And she totally owned it. She took her hat off with confidence and looked amazing. Such an inspiration. If I go bald, or my hair goes very patchy and I choose to just shave the lot off, I want to own it too.
The NHS offers a wig referral, and I will get a wig, but not sure how I’ll feel about it. Wigs now are really very good, although the thought of a human hair wig is a bit repellant to me so I’d chose a synthetic one. Will I want a new look? Will I want to wear the wig?
Last week I discovered the joys of dry shampoo and using a wide tooth comb. It puts minimal stress on hair roots and means I can wash my hair just once a week. In the last couple of days my scalp, especially the crown, has become very itchy. And you know that painful feeling in your hair follicles after you’ve had your hair in a ponytail or up-do, and then take it down? That’s how it feels all the time. My hair is falling out more than usual, but not noticeable to anyone else. The grey ones seem to be staying put though!
Chemotherapy is indiscriminate in that it just wipes out lots of cells. So, not only does it wipe out the cancer cells (yes please, kill off the little buggers!), it also kills some white blood cells, which means the immune system is compromised. Consequently, anyone undergoing chemotherapy is under strict instructions to watch out for signs of infection. Those self administered injections I have are to build up the white blood cells. The advice is also to avoid anyone with germs, and busy public places, between days 7 and 10 after chemotherapy.
I take my temperature every morning now. This is part of the letter which I have to give to the London Ambulance Service should I call them:
I never want to find out what is meant by profound diarrhoea.
So, having taken sensible precautions, imagine my surprise when I infected myself! I learnt yesterday that the chicken pox virus (I had it when I was 5) lies dormant in our bodies, just waiting for a compromised immune system to offer it the opportunity to come back as shingles. Yes, I have shingles.
Earlier in the week, I’d had raised glands in the right side of my neck, and an itchy spot on my hairline. I showed the breast care nurse. She was not unduly concerned and advised me to keep an eye on it. I had no temperature, so was not worried either. I had a headache at times, and an itchy head, but these are side effects of the chemo. But my forehead got spottier and itchier. And my right eye became very puffy at night time. So, I didn’t follow my own advice, and I goggled my symptoms. Mmmmmm, looks like shingles to me. Off to A&E I trot with my overnight bag (just in case).
One of the plus sides of having chemotherapy is you get fast tracked through A&E and given an isolated room. A doctor took one look at my forehead and confirmed it is shingles. Fist pump for me, I got it right!
I’m now on another drug, Aciclovir, for five days. The blisters are infectious (keep away if you’ve never had chicken pox) so I must try not to touch them, but also keep the area clean. They’re quite painful and itchy. Fortunately I still have a fringe to cover them up and the sun is out so I can wear my sunnies to cover my swollen eye.
Today I’d planned to get out on the bike. That idea’s on ice for now.
What’s really annoying is it may delay my chemotherapy on Tuesday. Grrrrrrh. I feel well and ready to go again, but my oncologist may not want my system assaulted with lots of drugs whilst my body is dealing with the poxy pox. I see my oncologist tomorrow, so we’ll see what she says.
And do you know how hard it is to not scratch when you have an itch?