Thursday 3rd May – Chemo #6 – What Next – there’s always more to a story.
I started to write this when I was 3 days post-chemo, as I sat propped up in my bed, which I’d barely moved from in a couple of days. I felt like my teeth were about to fall out, I was sick to my stomach, my veins hurt, my bones ached, I was emotionally and physically exhausted and I was asleep more than someone with narcolepsy watching paint dry. I am now finishing this little update from my sunny garden with the dogs by my feet, no noise other than the soft quacking of our ducks, and a decaff, coconut milk iced coffee. What a difference a few days makes.
The week before chemo either drags on and on or it zooms by in a blur. As it was my last chemo and we were hoping to see a consultant, Ally was with me as we headed (with a cheeky side bet) to Cheltenham to see the Oncologist on Wednesday. We did not see a consultant, but we saw a very friendly nurse who I’d seen before. The information gained at these appointments is not really worth the time, effort and petrol money to get there. I am weighed (for the chemo dose) and then I’m asked if I was sick during my last chemo, and then the world’s most annoying question ‘Any questions’? The trouble is that I always have about 15 billion questions, and I am never given a straight answer, and often no answer at all. I understand that for many questions there just aren’t answers but I do find it so frustrating and scary that I was given a treatment and surgery plan back in December, just days after an earth shattering diagnosis, and I haven’t had an update, a consultant (Oncologist or surgeon) appointment or a physical check up since. I shouldn’t rant, I believe it’s the same for everyone. I just don’t think that it’s right and I’ve felt like I’ve had very little information from the docs.
After the appointment, Ally and I decided we would make the most of the day and we took Filly out for lunch – we decided we would stuff our faces at lunchtime and have my final ‘last meal before chemo’ together. We went to one of our favourite local haunts (The Bell, at Sapperton, near Cirencester). It’s a friendly local pub that we often visit with the dogs, so we knew there would be a warm welcome and good food. We sat with our drinks before lunch and played board games and Jenga with Filly – it went so well until Ally and I became too competitive and Filly told us to stop, in no uncertain terms! For my last meal before my (hopefully) last chemo I had a vast spiced roast butternut squash salad with lentils, pumpkin seeds and walnuts and a side of delicious fresh spring greens. Filly ate fish with veggies and Ally was extremely happy with a pile of locally produced sausages with creamy mash and gravy. There may or may not have been an indecent amount of ice cream shared between us all (and I know I shouldn’t indulge in dairy, but it was organic and screw it all, because it was DELICIOUS!!)
I didn’t sleep at all well on the Wednesday night. I felt very anxious about whether my veins would hold up (it’s now impossible to take blood from my right hand or arm as I’ve developed chemical phlebitis from the drugs and my veins have completely collapsed). I worry about my hair too, probably more than I should, but I’ve got this far and I hope that one final chemo isn’t a bridge too far and it falls out. I was worried how I would feel after finishing chemo. It’s hard to constantly wonder what’s going on inside one’s own body, but while on chemo I can at least be reassured that it should be killing the rogue cancer cells. On Thursday, Ally and I trundled off to the unit, juices and bananas in tow for breakfast as, for the first time, we were running slightly late. We did make it on time and our favourite nurse was assigned to me, so things were looking up. I was cannulated and the drugs all went in without any fuss, my lovely Mrs P came to visit again, with the good coffee and brownies – I will miss those; then before we knew it, my cold cap was off and I was finished (the crazy cold cap wet hair was why I was wearing a bobble hat indoors).
Ringing the bell was an odd feeling. It was hard because I had been chatting to a lady who was only just starting her chemo regime and was obviously scared of what was to come, and there were people on the unit who didn’t know when, or if their treatment would finish, and then I really wasn’t sure that I wanted chemo to finish – crazy I know, because I’ve never felt as bad as I have during chemo, but like I said before it’s a crutch and it’s a known, when everything else is so unknown. I also felt like a bit of a fraud because I knew I’d be heading back onto the unit in 3 weeks time for my first Herceptin injection, something that I will do every 3 weeks for the next 10 months. But still everyone loves a bell ring and a certificate!
The few days after chemo are quite a blur, the side effects I described last time all hit again, but earlier and fiercer than before. I vaguely expected it as lots of people had told me that the effects are cumulative but it still felt like I’d been hit by a train. This time was particularly hard on Ally too and sadly we had a couple of days where we weren’t on the best of terms. Like all toddlers, Filly is a handful, that coupled with a big, old house and 2 errant dogs to look after, an extremely demanding job and a poorly wife who doesn’t know whether she’s coming or going due to chemo and steroids, meant that he reached his point of exhaustion physically and mentally. Thankfully we had some time on Monday while Filly was at nursery and before my parents arrived to take over nurse duties to reconnect, and to remember that before all of this we were the best of friends and partners in crime and to remind ourselves that we are still the same people, just with some new experiences and a few challenges that we weren’t expecting ahead. And amidst all of this there were still the nightly injections into my tummy. Because I had a surgeon appointment yesterday, both Ally and my dad were around for my final injection on Tuesday. There was a tussle and my dad lost so he had to give the final jab. It still bloody hurt, even after 30 of them!
I said at the beginning of this week’s update that there’s always more to a story and there is: I have a date for my operation. So now I’m on the downhill slope from the effects of chemo and feeling stronger each day, I am sure the glorious sunshine helps, I’m hoping to get back in the saddle next week and to try and go for a run, or at least a run/walk. It depends a little on how my lungs recover as I still get quite breathless at times, but I am determined to be as strong as possible for the next stages. I’m also trying to plan some other nice things to do before the op. One pal suggested a ‘goodbye boobs party’. I’m still thinking on that one!
This is my chemo count so far:
15 blood tests
30 GCSF injections
Hundreds of steroid tablets
Tens of anti-emetic tablets (including the fancy, terrifyingly expensive ones)
21 antibiotic tablets
2 large bottles of Gaviscon
1000 Cough sweets
4 bottles cough syrup
1 abdominal ultrasound
1 chest X-ray
And zero admissions to hospital; I would call that successful.
I have worked so hard to eat the right things and to boost my immunity so I’m really pleased with the lack of other medical interventions that I’ve needed. Despite this, my very wonderful friend has given me the hashtag #drugwhore – she never fails to make me giggle – well Lulu, my big sack of drugs is being ritually chucked out this evening!