Monday 23rd April – Easter eggs, a big birthday and Chemo #5
It’s been a while since I last wrote, mainly because it’s hard to find a balance between the bad days where I don’t feel like writing and making the most of the good days with friends and family and not having the time to write, and also because I’ve barely had a moment alone.
Easter came and went in blur of lovely extended family time. We had an afternoon tea birthday party for my mother in law on the Saturday before Easter. It’s always fun to have both mine and Ally’s sides of the family all together; and thankfully my vegan cakes worked well, either that or my family are excellent liars and I can expect to find discarded half eaten cakes in plant pots! On Easter Sunday we had an Easter egg hunt with Filly. She didn’t quite understand at first, but she quickly picked up that the eggs contained chocolate!
In the afternoon of Easter Sunday, my RDA group were holding an Easter afternoon tea and a pony ride Easter egg hunt. The hoist that we use to get our riders on to the ponies broke earlier in the year so we hastily arranged this event to fundraise. The hoist will cost around £5000 to replace; we need to fundraise just to keep going as we don’t charge our riders (unlike other RDA groups) so its a huge blow to have to find and fundraise an unexpected £5000. After the chest infection, I wasn’t quite 100% so I was ‘front of house’. I had such a fun time talking to people about our group and what we do; it was a really great feeling to be completely myself and to talk to people about something I’m so passionate about, and although my friends and family who came to support us knew my situation, no one else had a clue – thanks to the cold cap and some unexpertly applied make up. Filly had her first pair of jodhpurs for the event. It was a big moment in our house and I was a very proud mummy. She wore them with a pony jumper and looked unbelievably cute. She rode our Shetland, Sweetie, who is as gentle as a lamb; unfortunately Filly was in a little bit of a grump (maybe something to do with the amount of chocolate she’d been fed by grandparents and uncles while Ally and I were away setting up for the pony rides) and cried until we ‘found’ her Easter egg. Let’s hope this isn’t a sign of things to come.
In the week after Easter I had my 5th dose of chemo, and my 2nd dose of Herceptin and Pertuzumab. The infusions all went without a hitch and were on time, I was back home just after lunch. I was lucky enough to have another visitor, Mrs P came again and this time she bought vegan raspberry and chocolate brownies and coffee (decaff with coconut milk) from The Scandinavian Coffee Pod. It was almost worth the pain of the cannula and cold cap for the treats. I’d managed to pick up another cold and cough just before chemo and wasn’t quite feeling my best so Ally and I had the hugest, rainbow salad with houmous, warm falafels and pitta breads for my (our) last meal before chemo. It was simple but delicious and filled with vitamins.
One of the worst side effects of the new regime is the ‘brain fog’. I’m not sure how else to describe it but from the day after chemo for almost a week I feel like I can’t think clearly. It’s a struggle to make even the simplest decisions. I had a silly row with my parents when they had taken over nursing duties from Ally because I couldn’t think straight. I couldn’t make them understand that I wasn’t trying to be difficult, it’s just that I was completely overwhelmed by the weight of having to make a decision that I didn’t feel capable of making. I’ve also noticed that I struggle to find the correct words sometimes. It’s extremely frustrating and it makes me want to hide away and not have to communicate with anyone, but that would be letting the jellyfish get one over me, so I plough on and just risk looking a bit stupid, which in the grand scheme of things isn’t the worst thing that could happen.
The physical side effects nowadays last a lot longer than the first 3 rounds of chemo; I can’t say that I’ve felt completely well since before chemo number 4. Each symptom on its own is manageable but when you add everything together, plus the constant internal battle of wondering whether this is life-ending, of whether the chemo is working, or whether that headache / cough / ache is the cancer spreading is unexplainably hard work. I was asked at my last chemo review appointment (I won’t call it a consultant’s appointment because he never actually shows up) what my side effects were. I listed what felt like hundreds, but as soon as I’d left I remembered a dozen more that I forgot to tell them about.
I’m not sure anyone wants to hear me whinge about side effects but I’ve been asked to share how things are and also it may help my friends and family understand why I am so rubbish lately and have cancelled far, far too many plans. So here is the list (and I’m pretty sure I will have forgotten some): fatigue (don’t come near me if I haven’t had my afternoon nap in the first 2 weeks after chemo, thankfully Filly still naps so we snooze together), insomnia (caused by the huge amount of steroids I have to take, this lasts about 4 days post-chemo), weight gain (grrrrrrr, this is due to steroids and the lack of exercise. I’m now down to just a couple of days every 3 weeks when I have the energy to exercise, I cannot wait to get out to circuits and running again), indigestion and acid reflux (never had this before in my life. I thought I was having a heart attack when it first happened! Gaviscon is now my friend for the first week following chemo), bone aches, muscle aches, depression (I have one day, I think it’s day 5 or 6 post chemo and everything makes me cry, good or bad it doesn’t matter, I cry at it all. I try and make sure that Filly goes to her Grandma’s on this day), chemo burns (I have awful purple / red marks on my hand and arm from where the chemo has damaged my veins, it’s very obvious and I’ve caught people staring at them; it’s another shitty reminder), dry, papery, old lady skin (I think this is from the steroids, but the good side is that i’ve treated myself to an entire new range of cosmetics and skin / body / hair care products. They are all organic, vegan, paraben and other nasties free. It was a bit like Christmas when the huge box arrived, it was very exciting, most of all I love my new Balm Balm Rosehip serum. It smells wonderful and despite everything my face is looking bright), lack of eye hair (I now only have 3/4 of an eyebrow – in total, and 14 eyelashes, and yes I count them, thank goodness for make up), hair loss (despite the cold cap my hair has thinned a great deal since I started on Docetaxel. I should only wash it once a week, but now when I do it falls out in clumps and I end up with a huge ball of hair. I must say that this freaks me out more than a lot of other things, I just pray that there’s enough left to get me through the final chemo), nail loss (this hasn’t happened yet, but in order to try and stop it my finger and toe nails are painted either dark grey or black, which isn’t very Spring like; my cuticles have all receded so I’m being careful, I’m not sure how I’d feel if I started losing my nails), bleeding nose and gums, constant taste of metal (no matter how many times I clean my teeth or use mouthwash or what I eat I have a metallic taste), anxiety (I’ve mentioned this already so I wont repeat myself) and I will end with breathlessness and palpitations. Quite a list!
But life isn’t all about chemo and cancer and something much more important happened in mid-April – our wonderful, clever, funny and so very mischievous daughter turned 2. Sadly she had picked up a chest infection, which she was on antibiotics for, and Ally was stuck in Scotland with work (too foggy to fly home) so her actual birthday was very quiet and although we had a small cake and she opened a few presents she was too unwell to celebrate. Her birthday weekend was spent with just the 5 of us (Filly, Ally, Clarence, Hartley and I) we went swimming with the dogs (they swam, we watched) and had a picnic and ice creams and we went National Trusting, which Filly loved as there were flowers to pick and peacocks to chase (we are definitely adding a peacock to our menagerie). We had a lovely Sunday lunch with friends. Filly sat at the head of the table and made sure that we were all kept in line, including the waiting staff, she is so bossy. Unfortunately just after we thought she had recovered she dipped again. I had to stay up with her for a couple of nights and completely exhausted myself so Ally was forced to take more time off work to take care of us both. After we both slept for what felt like 2 days solid, we were feeling much better and Ally was able to get back to work. Filly’s birthday celebrations finally came to an end this weekend with a visit to the Grufffalo trail and more excellent lunching with her Grandparents and uncle. Her very naughty uncle (my brother) after being warned to buy her something small for her second birthday (for her first birthday he bought her a ball pool, for which we had to convert our wine cellar into a playroom), gave her an electric ride in Range Rover, Needless to say she was thrilled. I’m wondering where the hell its going to live and can I fit in it?!
Please forgive the slight change of direction, but if you’d like to donate to the fund for our new rider hoist, here is the link. If you’d like any more information about our charity please let me know in the comments and I’d be happy to talk to you about it. Thank you for reading all of this x