Hair

Since my last post, the rate of hair loss has increased. Over three days last week a carrier bag of hair fell out. On Thursday morning, I woke up feeling emboldened and largely recovered from shingles. The scabs had dried over, so before I had a chance to procrastinate I called the hairdresser and booked in for a hair cut that lunchtime. Over the telephone I explained I was having chemotherapy and hence my need for a very short cut, and wanted to book with a hairdresser that would be ok with that. She booked me in on the first available appointment. 

Never have I felt so nervous going to a hair appointment, I had butterflies in my stomach and a lump in my throat. When I arrived, as always happens, one of the juniors came over to take my jacket, put a salon robe on me, and then take me to the basins to wash my hair. 

“Oh no, my hair’s falling out, I don’t want it washed, thank you.” The poor young woman looked at me a little startled and went off to get me a cup of tea instead. 

On Pinterest I’d created a board of great looking pixie cuts. I had high expectations from the examples set by Natalie Portman and Anne Hathaway. I showed the pictures to me hairdresser. 

“Oh, you mean really short!” 

I had wondered if I’d be ok to watch the cut. It was fine. The hairdresser had lots of experience with customers dealing with chemotherapy or alopecia, so we chatted about hair loss, amongst other things. I also asked her if she’d shave the whole lot off if that day came, and she said she’d be happy to.

My hair tumbled down my shoulders in great clumps and fell to the floor as a new look me was emerging. Goodness, what a huge pile of hair to be swept up. 

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I didn’t hate what emerged, she’d done a great cut, at least I don’t look like a boy, but I did think I look like me when I was about five years old (with a few added wrinkles).

On the way home I went in to a cafe to have lunch. Nobody fainted with shock on seeing me. Nobody gasped in horror. My new normal was not extraordinary. Phew.

I went home, and was utterly spent, useless for the rest of the day. It was almost as exhausting as hearing I have cancer. 

Over the coming days my hair has continued to shed and my scalp is sore as the hair follicles give up. My pillow is covered with hair in the morning and my handheld Dyson has never had so much use as I leave a trail of hair wherever I go. I joked with my niece and nephew about not standing in the wind in case it blew my hair away.

Thank you to everyone who has complimented my new look, it really helps.

This may all read as terribly vain. But look around at the media, what is considered feminine, youthful and desirable now? Long, full hair. Women’s hair is a multi million pound, heavily marketed business. Women have extensions woven and clipped in, to achieve this look. Gail Porter was seen as brave for being bald in public, and Britney Spears labelled crazy when she shaved her head. I’m never been a girly woman, but I’ve always taken pride in my appearance and this change is one I did not choose. I’ve chosen to own this change, but that doesn’t mean it doesn’t hurt. 

And more than that, losing my hair is a constant and highly visible reminder that, try as much as I might, I am not totally in control of what is happening to my body. This is what cancer, and its treatment, do to you. 

Preparing for chemotherapy session 2

Whoever thought I’d be glad to be having chemotherapy? I was so frustrated last week to have my chemo delayed, as the sooner I start, the sooner it’s over. But it gave me the chance to enjoy Easter (chocolate!) and I even got out on the bike, which made me super happy. 

First thing this morning I was at the hospital for my blood test. Unlike the Imaging Department and their pizza bleepers, for a blood test you take a delicatessen ticket and await your turn.

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Then off to Cherry Lodge Cancer Care centre for an acupuncture session. Apparently, it can really help with the nausea, so worth a try. Needles in my feet, legs, tummy and hand. Felt like a pin cushion after the blood test too.

This afternoon I went to Raoul’s in Paddington to choose a wig, accompanied by one of my friends, and we had a great laugh. The NHS fund a certain amount towards a wig (for the Whittington it’s £120, apparently it varies by  hospital) but you can top this up. Every customer has a private room, and your wig fitter brings a selection to try on. Some of them looked truly awful and were obviously wigs. Interestingly, the long ones look more fake. In the end, my friend and I agreed that a short wig, like my new cut, was the most flattering and least obvious. Not sure how much I’ll wear it, but I’m glad I have it should I lose a lot more hair.

I’ll persevere with the cold cap tomorrow, although it might hurt more with so much less hair to protect my scalp. And I’ll remember to pack a thin lunch.

Chemotherapy delayed. Thanks shingles!

A quick update to confirm that my oncologist has delayed chemo until Wednesday 19th. She wants to be confident that the virus is under control before my body gets blasted with drugs again, especially as the poxy virus (proper name herpes zoster ophthalmicus) getting in to my optic nerve could be quite nasty. All a bit frustrating, but I was warned than all treatment plans are subject to change. On the positive side, my taste buds are fully recovered and will appreciate Easter eggs.

And  I came home with an actual bag full of drugs. I’ll be staying on the anti virals all through chemotherapy and for six weeks afterwards.

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Inspired by Victoria Derbyshire I thought I’d do a video about hair loss. If I suddenly plunge in to depression about the whole thing, I may not do another one!

 

And this came in the post today, it’s a personalised medical alert bracelet, which I’ll wear when I’d doing anything a bit risky, like hurling down hills on my bike at 40mph…… I bought it from Etsy for £11.30. Great idea for anyone with medical conditions.

 

Bring on chemo session #2, I’m ready for you!

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

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…

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Hair

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!

Infection

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:

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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?