15.08.18 It felt like being eaten alive when I was told that I needed chemo. The thought of it was paralysing and the fear of the unknown was unbearable. My biggest concern was how would it affect my children. I didn’t want them to see me sick.
I’ve been prescribed a juicy 16 rounds of treatment (my oncologist called it a ‘robust health package’). The first four are every 3 weeks with a drug called EC (a combination of epirubicin and cyclophosphamide) and then the drug changes to Taxol (Paclitaxel) which i’ll have 12 weekly rounds of. By Christmas i’ll be done (then radiotherapy and hormone treatment – but let’s worry about that later).
This is a bit more of a factual post about the ins and outs of my chemo sessions. Only 10% lols included i’m afraid. So far i’ve had three rounds – my last was on Monday 13th August. I normally arrive at 9.30am to have my bloods taken and tested to make sure that i’m well enough for the ‘infusion’. They call it an infusion like it’s some sort of Michelin star fine dining experience. Then by 11am I start having the pre-meds injected into the permanent port under my arm (I wasn’t born with this – it was fitted a week before and will eventually come out). These are anti-sickness drugs and steroids which are there to give me the best possible recovery. I wait a further half an hour and I have the cold cap fitted (this is a whole other blog post in itself).
(left: portacath in my arm makes giving chemo much easier. Middle: Cold cap. Right: Portacath hooked up to drugs)
The cap is designed to minimise hair loss. On EC you’re pretty much guaranteed to lose it unless you give it a whirl. At best it’ll save 50% of your hair i’m told. Once the cap is on it’s another hour wait until the kick ass drugs start. The whole time i’m on a really comfy chair and even have some reflexology which helps distract the pain from the ice cap (NHS offers reflexology in most places apparently). At around 12noon the breast nurse comes in with the 5 big syringes on a serving tray. She sits next to me and slowly starts injecting the bright red liquid one by one. It has to be done really slowly so takes a few hours. After about half an hour I start feeling quite woozy. You can see it in my eyes in this photo. I tend to have to sleep a bit at this point. Then by about 3pm the drugs are all
in and i’m left for another 90 minutes so that the cold cap can carry on working it’s magic (fingers crossed). I can eat and drink as normal by the way so that always helps to pass the time. It’s normally about 4.30pm that I’m good to go home feeling exhausted but happy that i’ve got another one under my belt.
COME CHEMO WITH ME
Just for my own sanity i’ve asked friends to come and sit with me to help pass the time. I can’t explain how good it feels to have that support. Going into the sessions are a head
mash. Just knowing the hole it’s about to put you in again makes it so much more bearable if you’ve got your unconditional A team behind you. I can’t recommend it enough (plus they’ll do anything for you if you play the C card).
I’ve been told to keep a daily diary of my side effects as they tend to repeat themselves after each cycle. I have an arsenal of meds to work my way through which keeps the
(Left: Mark’s lesson in giving my injection. Right: My drug stash)
sickness at bay, my mood up and my immune system boosted. Mark has to inject me with a neutrophil injection which basically boosts my white cell growth (good old chemo tends to wipe these out). So far, days 1 and 2 have just made me feel tired (except this last round has hit me hard with sickness) and day 2 evening is when it really kicks in. I get waves of nausea which is all consuming. I make sure I eat little and often as food is what seems to help manage it. I tend to have to stay sat still a lot which is nothing but frustrating. I can’t sit still at the best of times. Days 3 and 4 tend to be even worse for me
with the sickness and exhaustion. I sleep a fair bit. The chemo fog is indescribable – it feels like i’m drunk but without the fun. I’m glad that lifts after about 5 days. One of the hardest things is not being able to be a proper mum..especially now during the school holidays. This time round they’re with my inlaws for the week so i’m relying on FaceTime but missing them like nuts.
(FaceTime from my bed with April yesterday)
Then days 5 and 6 I start to come out of the dip but i’m usually hit with muscle aches and spasms caused by my bone marrow making new white cells (so it’s a good thing – just painful). The spasms tend to give me random involuntary thrust movements in my groin which apparently looks amusing. I’m glad they don’t last long. After a week I really turn a corner and begin to feel better and better each day. The tiredness stays there and I feel generally weaker than normal but that could be down to the surgery i’ve had as well. Mood-wise it’s a bit of a rollercoaster if i’m honest but i’m generally a laugh a minute.
(Left: One week after chemo and i’m out and about at school sports day. Right: A spot of camping in the South of France 6 days after treatment)
I have to be extra careful with hygiene and ideally not be around sickly people because my immune system is low. It’s especially low week 2 of my cycle as that’s when my neutrophil count drops. If my temperature gets to 37.5 then it’s straight off to A&E in what is known as the ‘golden hour’ to get straight on antibiotics/fluids with some sort of hot doctor to compensate.
Sorry – i’m writing this and all I can think about is eating a Nandos (chicken extra hot). I keep getting these weird pregnant like cravings and the only thing that fixes this nausea is having said craving satisfied immediately. Nandos….i’m coming for you.