Well it’s two weeks today since I had my first round of chemo – and this time next week I’ll be preparing for round two. It’s felt like a long two weeks – mainly because I’m living with so much uncertainty and am in a constant state of alert about how I’m feeling, what side effects I’m suffering, am I so unwell I need to get checked out by the chemo unit, what’s my temperature etc etc
The list of possible side effects is vast, so vast I chose not to read about them all in detail, instead checking things out as they crop up. I never read the possible side effects of medication either – am a great believer these things can become self-fulfilling prophesies so it’s better to be mildly ignorant rather than to start imaging you are suffering from all manner of things! I was incredibly lucky and, while suffering from mild nausea for some of the time, I was only sick once, and that was early in week one. I did get a very sore mouth with a couple of ulcers, but that passed off last Thursday, and a very odd tingling sensation in my arms and legs, but again that was temporary.
I did have to pay a little visit to the chemo unit last Thursday as I developed some strange spots on my right arm and right breast (as if I haven’t got enough going on there!) – very inflamed looking skin with spots with a nasty looking yellow head on them. Two nurses and a doctor had a look and remained perplexed – it could be the chemo toxins being expelled from my body, but they hadn’t seen anything like it before so I was despatched home having had my temperature taken (the key indicator something is wrong) and told to ‘come back if they get worse’. Have just noticed two more on my arm today so just as well I’m seeing my oncologist this morning for a check up!
Ray was all for taking photos of the spots so we could plot their progress. He’s becoming quite the amateur photographer, taking pix of my dodgy boob so we can see how the rash and blisters are (hopefully) reducing as the treatment goes on. These pix are then downloaded from the camera immediately and hidden in a folder on my laptop so as not to frighten anyone! I also had photos taken at the Medical Imaging department at Stoke Mandeville in December. The photographer was lovely (a lady thank goodness) and she had me standing in front of a huge white screen just like a commercial photographer’s studio, topless, while she snapped away at different angles. Not quite my Gok Wan ‘How to look good naked’ moment!!
The key side effect I suffered was tiredness, which left me so frustrated and also hugely guilty. Poor Ray would get in from work and I would literally have done absolutely nothing some days – even last Wednesday I didn’t get out of bed until 3pm! But, after much lecturing from both he and my mum, I accept it’s my body’s way of recovering and I just have to ‘go with the flow’. No one is expecting me to be doing loads of stuff, just because I’m at home and not working, it just seemed never-ending at the time. BUT the chemo fog began to lift late Thursday and on Friday I woke up before my alarm, and lay there fantasizing about a cup of tea. Since the chemo I was completely off tea and coffee, drinking lemon and ginger to combat the nausea and lots of cold squashes. That cup of tea on Friday morning was like nectar! I was also like a different person. My energy levels had soared, my head was clear and I felt normal – and boy did I make the most of it! Popped to Homebase and bought a load of half price plants and created a three tier, cascading display out of an old vegetable rack to brighten up the garden, got my car cleaned inside and out, booked a last minute manicure (chemo shatters your nails so mine were splitting and flaking but are now a short but cheery ‘pink bikini’ colour) and dyed my hair a mucky brown colour so we can both get used to me being darker when my alter ego Chestnut Cassidy makes her first appearance tomorrow when I get my head shaved.
I had been told I would start losing my hair on day 16 after chemo (so Wednesday 29th) but I starting shedding on Friday. Looked down in the evening I realised my top was covered in hair. It also comes out when I brush, or run my hands through it, and I’m shedding like a cat so I know I have made the right decision to get it shaved, it’s driving me mad! One thing I have decided is that whatever colour it grows back in, I’ll be going dark. After about three years of progressively going lighter to cover the grey, wearing the wig, and dying my hair darker again, actually makes me look younger so I’ll be staying dark. It’s not only my head where I’m losing my hair – suffice to say I won’t be needing a bikini line wax anytime soon!
As I was feeling so well on Friday I also did a ring round of hotels and booked a last minute overnight deal at a gorgeous hotel in Southampton for Saturday night – dinner, bed and breakfast for 2 for £99! I would never have believed on Wednesday I would feel well enough to contemplate anything like that so it was fantastic. Those who know me know I am the consummate planner, booking holidays, weekends away, and tickets for events months (sometimes more than a year!) in advance so not being able to plan anything is quite a challenge but now I have a clearer idea of the likely pattern it is fantastic. I know I will have really good weeks, so can ‘plan’ – a little bit anyway. My life is so much more than being a cancer patient so I still plan to take advantage of offers and opportunities as they arise!
Psychologically it’s been very strange to get used to not working. From the day I left university in July 1989 I’ve been continuously employed, with only holidays and the usual ‘normal’ illnesses. When I was first diagnosed I had hoped and planned to work on my good weeks because I absolutely love my job, my colleagues and my clients. Unfortunately it became clear pretty quickly that suggestion wasn’t going to work for my company and, after I’d used up my sick leave, I would then move on to the basic Statutory Sick Pay, so the decision was taken out of my hands. Dropping from a good salary to £86.70 a week is a terrifying prospect at any time but when you’re also faced with a potentially life-threatening disease it’s utterly devastating. Fortunately we have savings, and an amazingly generous family who are supporting us, so I can focus on my treatment and recovery.
Friends and family continue to be amazing and I am just so sorry that things will get worse before they get better and I will need their love and support so much over the coming months. I have a band of personal chefs making us lovely food, and receive a constant stream of texts, emails, and cards wishing me well and sharing daft jokes and photos. Keep ’em coming!!