The fact that I’ve not updated my blog since my first chemo-eve should tell you something.
I feel that now, sadly, I must admit, that treatment has overtaken my life.
It feels like a long list headed ‘no you can’t’. So I’ve had to work hard at recognising and enjoying the good things that are there, especially the unexpected ones, that are even more special.
Keeping your head in the right place is essential in this battle.
My stoic mental attitude that mysteriously developed in my pre chemo days luckily stayed with me right thru my day of treatment. Chemo itself was a very strange experience. I managed to concentrate on only one thing – keeping the cold cap on – which I did. To answer the questions to those who are wondering… yes, it’s cold, but I didn’t find it that bad. After 15-20 minutes, I couldn’t really feel it. It was heavy; but do-able, and looking back it was a welcome distraction from what was going into my arm.
I didn’t use my headphones – I didn’t want to ram them in under the chin strap. I’m taking an older pair with me next time because I think music will be essential, as I am feeling so much more anxious now as I approach the second cycle. For me, now knowing what’s coming, is making it all quite hard to cope with.
I think I was unlucky to find myself in the chemo room surrounded by only men – all with hair – and all making no eye contact or conversation. I sat there looking like some space-age pre-Madonna in the corner hooked up to the cold cap machine one side and the IVs the other.
I expected chemo to be far more ‘social’ – but everyone very much kept themselves to themselves. No comments, conversations with other patients, no eye contact – but I may have just been unlucky. Saying that, the staff were lovely and there was very little time when I didn’t have a nurse treating me or the pharmacist talking me though the carrier bag of drugs I had to take home. So, time passed quite quickly. I couldn’t concentrate enough to read and with only one free hand, I couldn’t do a lot. It was a case of staying calm and in my own head.
What I didn’t know… luckily, I had a banana with me to eat as they were giving me the anti-sickness meds. I didn’t realise you had to time eating the ice lollies to cover the time it took to push the 4 huge syringes of red stuff through (quite difficult when they’re melting, but concentrating on anything else is good), and I will this time take myself hot drinks as the tea trolley didn’t materialise until 10 minutes before I left. So, my advice is to take snacks, lots of hot and cold drinks just in case, and a hat to wear over your greasy conditioner-laden hair when you walk out.
For the few of days after chemo I felt good: I think probably high on steroids. I concentrated on drinking loads, did my yoga, and pottered around as normal thinking I’ve got this… that was until the stomach injections started on day 5.
I am so glad I refused to entertain the idea of injecting myself. I knew I couldn’t do it feeling well, let alone feeling queasy. How right I was. I had arranged for the GP surgery to do them and went in every day with the syringe. Days 5-10 with those injections were the worst days. I felt sick, even getting them out of the fridge and into my bag was enough for me to wretch and going in to have them done made me feel even worse. I also developed debilitating pain and weakness in my pelvis which pretty much meant lying flat on my back was the only thing I could do that was pain free. I felt wobbly when I walked and sick pretty much most of the time, my mouth was sore and everything tasted funny. I took all the meds but was also juggling sluggish digestion, bloating, constant nausea and generally not having a great time. Needless to say, it’s this stage I am most dreading when it comes around again.
Having had my oncology review, things are in place to hopefully combat the bloating and my anti sickness meds have been changed. So hopefully I will have a better time in cycle 2 – we’ll see.
By day 12 things started to improve and over the last week I’ve been feeling better. Tiredness and waves of nausea are the new normal, but I can cope with those on their own. Eating and drinking helps the nausea even though it feels wrong and I’ve found I’ve found things that give me both nausea relief and some comfort. I make the most of my mornings and spend afternoons doing much less, then I can get through dinner/evening and still sleep at night. I did my first work from home this week, only a few hours, but it was something.
Chemo is lonely. I’ve been good at infection control, but that is quite isolating. Keeping up with contact by phone/text/message can be overwhelming and sapping of energy. Finding a balance between a level that nourishes me, rather than exhausts me, has been quite difficult – I will get better at it – and my friends know that I will reply when I can. I have been very open about how lonely this treatment feels for me, so they know I want to hear from them regardless.
So, as I start this new week, I have 3 days until my next chemo. I am dreading it. I am working hard on getting my head in the right place again, while trying to prepare by cooking ahead and getting jobs around the house up together.
Then to top it all I have been losing hair for the last 48 hours - nothing noticeable yet to the outside world – but certainly noticeable to me. I feel sad and upset – even though I knew it would happen and I’d prepared so many things in advance. Even in the best-case scenario with the cold cap, thinning will occur, but it feels like another thing on top of everything else I am trying cope with. I have been religiously wearing the sleep cap every night and now realise this comes with the anguish each morning of wondering if it will be full of hair when I take it off. As is now my life, I have no warning or control over how it will go. All I can do is cold-cap and hope.
To finish, I thought I’d share some (hopefully funny) irritations I’ve experienced since chemo started…
“….you’re having chemo? But you’ve got hair”.
(Like I deserve the double whammy of cancer and hair loss before you’ll give me any credit or sympathy!)
“My {insert name} didn’t feel that bad during chemo.”
(Like I’m making it all up!)
And on the positive side, some gratitude…
To my lovely friend who has turned up every week to weed my garden so I can enjoy it without only seeing things that need doing.
To my lovely friend who cleaned my bathrooms on Friday.
To my sister who turned up complete with picnic lunch which she cooked, served, cleared away, then left me to rest … a real treat.
To my friend who sat with me and sorted all my meds into the old persons pill dose box thingy, so I didn’t have to think about it all… and who has made numerous trips to the pharmacy to help with my digestive nightmares.
And to my sons… for always being my reason… for them I will fight on.
Till next time, my friends x
