Last week my hair started falling out – just a little at first, but by Friday, when I washed my hair it came out in clumps. Also it was falling out all over the place- on my pillow, when I touched it and I was finding it everywhere. Not nice. Although nobody would have noticed that I was slowly going bald, I did.
So I decided to have it all shaved off at the weekend. My husband got his trusty clippers and did the job – first taking it back to a number 5, and then pretty much all off. There are just tiny spikes left, which feel odd when I put a hat on, as though they are all moving in different directions at the same time.
I wear a hat when outside, mainly for sun protection, but also I guess I don’t really want people to stare. I don’t bother with anything inside most of the time though. Even wearing a thin cap makes my head get too hot, which is one of the reasons that I didn’t try any wigs.
I know that some ladies would be worried about being seen bald in public, or even with friends and family. But not me. Everyone who knows me, knows that I have cancer, and it’s certainly nothing to be ashamed of. And I don’t feel any less ‘feminine’ – what ever feminine is supposed to mean. I’m still Alex, just less hairy.
Like many of my tribe, I’ve always been a teeny bit obsessed by the social and personal column in the newspaper. Whilst normal people call this the births, marriages and deaths section, in our family this has long been known as the “hatched, matched and dispatched”.
It has been a measure of the years rolling by that my primary focus when browsing the HMDs has gradually shifted. As a tween, it was the bar and bat mitzvah pictures (particular the outfits and the hairstyles) in the Jewish Chronicle that attracted my attention. Gradually, as people’s grandparents began to pass away, I started to read the tributes in the dispatched columns. It was fascinating to piece together a life from the snippets in the notices. Old age and death felt so far away at that point. Almost before I knew it, it was the engagement announcements that became the most interesting…
Not every day is about side-effects and hospital visits.
It’s a beautiful sunny day, so we went to the park to have a picnic and play. We still want the kids to be able to have fun and do normal family things, and there aren’t too many people (and their germs) out on the grass.
One thing that worries us the most through this all is that our 9-year-old son, Connor, will suffer from the burden (and occasional boredom) of having a sick Mum. Obviously school is a great refuge for him, but we don’t want his family time to be all about looking after me.
When a kid at our church ( older than Connor) heard that I am ill, the first thing that he said was “That will be hard for Connor. I’ll pray for him.” This is the heart of God! I was so chuffed when his Mum told me that I nearly cried. He saw straight away right to the heart of the problem. I can cope with being ill, but Connor is just a kid- and one old enough to understand what’s happening. I wish that as many people could help him through this as are helping me. We have got some play-dates lined up for him in the half-term holidays, which is great as my next chemo session is that week.
And if you haven’t gone outside and felt the sun (or rain) on your face today – quick – go out before it’s too late.
The oncologist and nurse gave me a very long list of side effects of the chemo.
The most dangerous is my low white blood cell count (neutrophils), which means that I am at greater risk of infection.The chemo kills naughty cancer cells, but also other fast-growing cells like hair and skin and those precious white blood cells. So every time I do anything, I need to wash my hands. And make sure that others around me do too. And not hang around with poorly people (even if it’s ‘just’ a cold.) And not eat unpasteurised food such as brie (sob) or soft-serve ice-cream. Also I can’t change kitty-litter or do gardening (shame.)
There is a 24 hours a day phone number that I need to call if I have certain symptoms, such as a high or low temperature, shivvers, sickness, sore throat, cough, etc. It’s a hyperchondriac’s dream. Or should that be nightmare?
Anyway, 6 days post chemo #1, I am doing very well. The biggest side-effect so far is tiredness. That only started yesterday but is still life-changing, no matter how insignificant it seems. Two days ago I wanted to go out, and walk around and keep busy at home, which I did. Today I managed a trip to the GP, and to do some crafts with Bethany for a while, and to read my book. And that’s about it.
I’m not complaining – it could be so much worse. I expected to be throwing up and feeling rough and having no appetite for at least a week, and that’s pretty much not happened, which is great. I have been enjoying the delicious meals and treats that church friends and family have brought round (and posted) – thanks!
I realise that I also have the chemo fog – I can’t always talk as quickly as my brain thinks it can, and my memory seems to be a bit more rubbish than usual. So if I say anything odd on here or in real life – that’s my excuse.
My new normal is just taking each day as it comes; enjoying doing stuff when I can and resting when I need to (even if I don’t want to.) I will still get out – it was fab being at church on Sunday, but my capacity for adventure is currently diminished.
One good thing is that I don’t have to inject myself for a while
(until the next round of chemo.) I was having to inject myself with white blood-cell-boosting stuff every day for 5 days. I never really minded needles (thankfully) but it wasn’t the highlight of my day. I had to stick it into some fat in my tummy. Of course there was so little fat to choose from, but I managed. I took a photo of the needle so you could enjoy a tiny bit of the experience. 🙂 No need to thank me.
I had my picc line put in yesterday at the hospital. We were there for 4.5 hours. I needed a blood test first, to check that I am well enough to get started. They don’t make appointments for blood tests, so we got there very early to make sure that there was time to get the test results onto the system before my 3pm appointment.
The wait was fairly boring until a man in the waiting room started feeling unwell. Lots of doctors and nurses appeared. It turned out that he was having a diabetic shock from not eating lunch. It was quite scary to see: he couldn’t even tell them his name. Eventually he felt better and apologised. They found a trolley and wheeled him away.
The blood test was easy. We had an hour wait before my picc appointment, so took the chance to get a Costa and pop outside for a few minutes. It was nice to be outside but so windy. We went back inside and eventually found the right department.
A nice male nurse gave me a form to complete. Free prescriptions for life- result. You know when you meet someone and like them straight away- that. It really helps to have friendly nurses.
A lady nurse did an ultrasound on my arm to find the veins and stuff. A bit like a baby ultrasound but not as exciting. Then she got her scrubs on, cleaned my arm and gave me a local anaesthetic. She stuck the picc into my vein and it all went in easily.
A picc is a peripherally inserted central catheter that stays in for the length of the chemo regimen (18 weeks in my case.) It goes into the upper arm and is about 40cm long, leading to a large vein near my heart. It lets medicine be put straight into my bloodstream and bloods to be taken from there. It means less irritation to my veins but there is a small risk of infection and blood clots.
Anyway, there wasn’t any pain but I did feel faint for a few minutes straight afterwards. I started thinking about where the picc was (near my heart) and that freaked me out a bit. The nurse got me a cold drink of water and opened the windows and then I was fine.
I was sent down to the x-ray dept for a chest x-ray to check that the picc was inserted correctly, which it was
And relax. We finally went home and Mike had booked us a table at a posh restaurant owned by one of his friends. It was so nice to have a date night and take our minds off hospital stuff for a while. The food was delicious.
I slept quite well last night although sadly 23-month-old Bethany did not. She chose to wake at 3am and stayed
awake until school run time.
Today I have an appointment from 10 – 14:30 for chemo. I am sitting here having some pre-treatment anti-sickness meds and earlier, steroids, going in via my picc.
I feel fine at the moment, although chemo will be starting soon. Apparently three quarters of chemo patients get ‘chemo fog’, where there is some short-term memory loss. It sounds a bit like pregnancy brain.
I am sitting in a comfy chair in an open plan room with a few other chemo patients. A kind volunteer has made Mike and I hot drinks, and we have chatted to the patient next to us.
With all the kind and supportive messages, cards and generous gifts that I have received over the past few weeks, I must admit that it sometimes feels as if it is my birthday. But not just any birthday – one with gravitas. That’s the word that I have been searching for. Gravitas means ‘seriousness or sobriety, as of conduct or speech.’
That’s the thing about cancer, that it is awfully serious and sober and dour. It is not much fun. It elicits a response of pity and anxiety and sympathy. And I can totally understand that, especially from people who have been through it themselves or who have a loved one who has. Because it’s difficult and emotional and yuk.
But gravitas is not really what I need right now. I need friends and family who will still treat me the same way that they always have (unless they are usually horrible to me – haha.) I need people who will be friendly; spend time with me and my family; be kind; but also be light-hearted and sometimes funny (even if it is dad-humour) and please talk about yourself too, whether things are good or bad. I get bored of myself after a while and like to hear about others.
My chemo starts next Wednesday and I am looking forward to it a bit – just getting started and cracking on and zapping those naughty cells. But I am worried about it too – especially knowing that my low white blood count will mean that I have to be OCD about handwashing and food hygiene for the next few months. I shouldn’t hang out with ill people- even if they have a cold – and I will go to church when I can, but I don’t want all sorts of people hugging me because their germs may make me very ill. Which is a shame, because secretly I love hugs.
Yet it’s no good feeling sorry for myself. I will try to live a normal life as possible, getting out the house every day if I can. It’s been proven that looking at trees is great for reducing anxiety and I know from experience that it sooths mental illness. It’s almost as if someone made them, for lots of sensible reasons, but also just for us humans to enjoy. I do not plan to be a hermit- that would absolutely drive me mad.
My sister Laura has suggested that I do more drawing, and that is a great idea. I have always loved it, but tend to forget. And writing, although brilliant, can be quite draining. So I will try to draw some more, and maybe post some of them up here. I’m no Monet, mind, so don’t get too excited. I guess that I can see this time as a chance to do some of the things that I usually put off, due to being too busy. And that’s got to be a good side-effect.