The next 12 to 24 months will be interesting!

So, I thought I’d throw in a post about what side effects I’ve been told to expect over the next 12 months of treatment and, likely, for the next 6 to 12 months afterwards. To be honest, I am still getting my head around it all myself and my top filing cabinet drawer is already almost full of documents and booklets; I’ve read most of them and, naturally, devoured anything I can find on the internet and on Leukaemia charity websites. However, whatever the predictions, even those of my own consultant, cannot be relied upon as everyone is different and so I may not encounter some side effects others have, but may get some unique to me. Time will tell, but knowing me, I’m bound to be an outlier! Let’s start with early side effects. After my second infusion I felt pretty normal, which means very fatigued and with a constant level 7 pain cursing through my body. This has been how I’ve felt for the last year or so; the pain relief I take on a daily basis enables me to function minimally and the fatigue is something I’ve just got used to and can’t relieve as physical and emotional fatigue can’t be sorted out by a long sleep! So, as I wrote the notes in my ‘patient journey’ booklet (to record how I’m reacting to the chemotherapy to share with the nurses at each visit) that first weekend, I was feeling pretty chuffed with myself that I felt as okay as usual. However, come Monday morning and I had a few new niggles. I always wake up around 6am (love a couple of hours to read the Guardian in peace every day) and today was no exception, but I felt so terribly tired and unrested; not surprising, given that I had had to get up several times in the night to go to the loo. But no mystery as to why my nocturnal need to wee had occurred, I am now expected to drink at least three litres of fluid a day (luckily coffee counts!). The reason for this important fluid intake is to avoid damage to my kidneys through Nephrotoxicity, as the pesky cancer cells I am killing off must be flushed out, or they’ll clog up my kidneys. So, first side effect experienced on Monday morning and by the evening along came number two – a disgusting metallic taste in my mouth, also known as ‘chemo mouth’. Yuk, my Caesar salad went in the bin (organic recycling, of course!) as it really tasted foul. Mint and chocolate ice cream would, I thought, power through, but no, that too was vile. Now, those of you who already know me well are aware that I am a real foodie; as are complete strangers, given that my snacking during shielding added a couple of stone to my previously slim frame! So, you can imagine my dismay that I face over a year of not being able to properly taste my food. I re-read the Blood Cancer UK booklet and discovered that there’s not much I can do, except add spices and lemon juice to my food. The latter will certainly work for some meals and the former is a good excuse to munch on my favourite curries and chili con carne! I now have around 50 fruit-flavoured ice lollies in the freezer to constantly attempt to cleanse my palate, but so far, that’s just temporary respite before the old metal spoon taste reappears. My third transfusion brought with it the start of the side effect I have been dreading most: hair loss. I had erroneously believed that most chemotherapy these days doesn’t cause hair loss and that cold caps were a way to prevent this; however, as my Clinical Nurse Specialist (CNS) slid the ‘wig referral’ form across the table, my heart sank. Before my own diagnosis of cancer, I had always assumed that anyone undergoing chemotherapy would have worse things to worry about than how they looked, but that turned out to be a false assumption. When you are facing a lengthy period of brutal and aggressive treatment everything matters, absolutely every change, and that includes appearance. I am, like many women, overly critical of how I look, disliking features and all the signs of aging and weight gain, but I have always LOVED my hair! I’m a natural blonde and, despite being almost 59, have not one grey hair (believe me, I get my hairdresser to check every time!). As a result of shielding, I have had just three appointments at the salon over two and a half years and my hair has grown to the longest it’s been since a teenager. I knew the moment I took the plug out of the bath that there was a problem – the water was draining too slowly. I reached down to the drain and grabbed a handful of knotted hair, and, in that moment, I cried. It’s the first time I’ve shed a tear since the day I was diagnosed and it felt wrong to cry over something which one could see as trivial in the context of the treatment, but I called to mind the saying “having a bad hair day.” It’s a fact that your hair is one of the first things people notice about you from a distance, so it’s a unique identifier and the saying is so true, when you have a bad hair day, it means your mood is off, which signifies how important it can be to one’s sense of self esteem and well-being.

Upon the realization that I would indeed be making use of the wig referral form, I sprang into action and called my wonderful hairdresser to book an appointment to have my hair styled whilst long, so I could have a record of it looking its best. Rhian, as always, ensured that the salon was empty of other customers, opened the windows and doors, donned a mask and set to work. The photo below is what I am gradually saying goodbye to on an hourly basis. So far, it’s not looking too thin, but then it was fine but plentiful 3 weeks ago and, as I enter cycle 2, I have been told to expect an acceleration of the loss. I’ll do another post once I have a plan and share my wig and head covering experiences as I encounter them.

For now, I’ve stopped crying and re-framed the hair loss as both a good sign that the chemo is doing its stuff and as an opportunity to experiment with hair styles and colours – expect to see pics of me in a bright blue fringed bob at some point in the future!