For those of you who have been following my story, you’ll know that chemo has been a long time coming. I was due to start chemo back in May for breast cancer, but 2 days before the first treatment I received the news that I also had cervical cancer. Unrelated, but just as deadly, if not more. Many scans and appointments followed, during which my two oncologists devised a treatment plan which would do all it could to fix the breast cancer, but in which the cervical cancer, as the active cancer, would very much be treated as the priority.
The lumpectomy I had in March had been extremely successful, and my breast oncologist was confident that I had been effectively cured of breast cancer on the operating table. The planned chemo and radiotherapy that had been scheduled were a belt and braces approach to killing any rogue breast cancer cells that were still floating around. In addition, I would be taking oral chemotherapy tablets for 5, possibly 10 years to stop the hormone-receptive cancer cells from re-growing. He told me not to be concerned about not having the breast chemo. I am concerned, still, I admit that, but I can only accept the advice of the experts around me.
So things switched up a bit from that point and the focus of everyone's attention was the cervical cancer. I was going to have a different type of treatment of this one - chemo radiation - which is daily doses of radiotherapy, with chemo once a week. The two treatments work together to weaken and destroy the cancer cells. But only for some sorts of cancer. Chemo isn’t just chemo, it seems, there are many different types and doses, for the many different types and stages of cancer. Who knew? And the chemo that I'm having won't treat any breast cancer cells, only the cervical ones. It really is quite the dark art.
I had my first chemo last week and it was OK. Just OK. I've had 7 rounds of radiotherapy now too, and the side effects are starting to kick in. It's not nice. I have permanent diarrhoea, pelvic pain, piles that have now started to bleed, and a whole host of other things which are lining up to whack me. I fall aleep about 5 times a day, everything smells weird, I despise the smell of the body lotion I have to slap on twice a day, and I feel permanently greasy and queasy. I'm grumpy, irritable, tired and fed up. I get hot flushes day and night, tingly legs, aches and pains, I'm not allowed to have nice hot baths to make it better. I live at the hospital and lovely as the NHS people are, I'm sick of it.
So, I have a choice. I can be a sad sack and moan about it, or I can suck it up and find the joy in there somewhere, however well hidden it may be. Guess which one I'm going for?
Finding the joy
I tried blogging about chemo last week but didnt have the energy. This week, as I head in for round 2, you lot are coming with me. I'm going to attempt a kind of live blog style thingummy. Are you ready? Let's go.
Today we have a hectic schedule. First off an appointment with my oncologost, then onto chemo, then radiotherapy after that.
I'm currently sat in outpatients waiting to see the onco, trying to think of intelligent questions to ask her, instead of "why does everything smell of cornsh pasties?" And "my arse hurts" (which isn't a question, but is still a pressing medical matter). Mr G has a theory that the cornish pasty thing is the smell of my tumour being nuked, but I'm reluctant to agree. Mainly because that means I can never eat a cornish pasty again and also because that means I smell of cornish pasty, not the rest of the world. This is unacceptable.
Incidentally Mr G is not with me today, perhaps a blessing in disguise given the pasty convo, because he's been told to self-isolate. He's fuming about it because it means he cant watch the England match at the pub, but also because of some innate sense of british anger at the universe. We're carrying a lot of angst at the moment, so he's entitled I guess.
Anyways the waiting room is sadly empty of character today, apart from the comedy consultant calling an absent Emily to her appointment, looking behind chairs and posters for her. He's now calling for anyone who fancies pretending to be Emily. A middle aged man is looking tempted, but in the end he bottles it. Comedy consultant leaves, clearly disappointed.
My consultant comes out and calls a lady in, so I figure I have at least 10 minutes. My current bowel situation is, shall we say, unpredictable, so I debate whether or not I have time to nip to the toilet for a quick visit (you have no idea how long I searched for with the right word there. 'Visit' was a compromise).
I have 2 options.
Run to the loo and hope she doesnt see the first lady in record time, so I miss my appointment.
Sit tight, hope the feeling I have is wind, but run the risk of something truly horrific happening if I'm wrong and if the Doc decides to attempt an internal examination.
I carry out a swift risk assessment and nip to the toilet. The alternative is just too much to bear. Turns out it was a wise move.
10 minutes later and I'm on my way again. All done. Everything is going well. I'm having 5 chemos in total, we can stop them if I start to have bad reactions, but it's all good so far.
The radiotherapy is by far the most important bit of my treatment, apparently. Side effects are inevitable but treatable so that's the plan. Hopefully the chemo side effects won't be cumulative, as many are, so if I survived last week, I should be OK for the next 4.
On the plus side, I can stop doing the daily pre-treatment enemas now that the diarrhoea is doing its job for it. Woohoo, that's one daily joy I won't miss, nor will my family.
I'm to see her again on the last day of radio, where we'll talk about the dreaded bracctherapy which is happening mid-August. I just cant even go there yet with the braccy horror mindset. It's still locked in deep dark box where it'll stay until the last possible moment. For now I'm just focusing on the next round of chemo and this week's radio treatments and that's enough for anyone.
I was going to ask about possible dates to start thinking about going back to work, but it went out of my mind. It's probably pointless now anyway, until we see what damage the radio and braccy might do to me, so I'll park that one for now too. My school are amazing, my teams are amazing, and they'll carry on being amazing without me, for as long as it takes.
I've made my way round to the chemo ward where I'm waiting to be called in for my next treatment. I do love it here, the staff are so amazing, and it feels like I could walk in any time and be welcome. I know that sounds weird, but it just is. There are some people who make the world a better place just by being in it. Most of them work in cancer wards.
Alan the volunteer is restocking the leaflet shelf. It is a thing of beauty and clearly a point of personal pride for Alan. Whatever you want to know about cancer, Alan will make sure there is a leaflet for you about it. We love Alan, and all the other Alans out there, doing their bit to make life better for people with cancer.
Parked up in the middle of the waiting room is this beast. I dont know who parked it, but it took some balls to ride this lad in through the main reception, along 2 corridors and onto a chemo ward. Whoever they are I love them. I suspect it may be the tiny elderly lady in the augergine felt fedora. I hope it is. I aspire to that level of badass.
It seems quiet today, afternoons are clearly a lot less hectic than the morning shift but we're running late. Last week was a riot. All was going well, I was in a side ward with 5 others, all very elderly and lovely, with one gentleman fast asleep in the next chair. Being at least 20 years younger than the rest of your ward mates is still a buzz, I cant deny it, although the realisation that I've got cancer 20 years before they have is a bit shit. Anyway, let's focus on the young bit.
After a large bag of fluids I was feeling the need to pee, so made my way to the loo and back with drips and machines alongside. It's an art form my daughter has mastered many times over her diabetic years, peeing avec drip, but it's my first time and I'm haunted by the fear of attaching myself to someone or something with disastrous consequences. I can so totally see myself dragging a little old man over as I swing by, in a Leslie Nielsen scenario. These things can and do happen to me. Often.
But the gods are smiling on me and I make it back safely, only to be greeted by snorey old man, now wide awake and ready to chat.
He asked me if i had what is known as a smartphone. I replied that I did. He was delighted and asked could it connect to the google website? I again replied that it could and he clapped his hands with glee.
Then it got tricky. He asked me to look up the total number of covid 19 deaths in the UK to date, because his 'friend' who works in intelligence gave him a different figure but has been silenced and now cant discuss it .
He himself signed the official secrets act in 1966 it seems, but he is retired now so they cant discipline him for talking about it. However, the figures which the government publish and the real figures are, apparently wildly different.
Fucksake, why me? The two ladies opposite are sending me silent sympathy, but they're not stepping in to help. Damn them.
I look up the numbers because I have no option, but I'm scared of where this is going. This isnt going to end well. I read them out, he asks me to divide the numbers by 12 and compare them to the published 2017 flu deaths in England and Wales. I hesitate but where can I go with this now, really? I do the maths. He writes it down in a notebook.
My nurse Nigel comes, assess the situation and smiles at me, then disappears. Minutes later he's back and he's standing between me and Crazy Bob, like a human curtain. And he has a bag of chemo in his plastic tray. My chemo. Crazy Bob momentarily admits defeat and slumps back in his chair, I'm no longer an option it seems. Chemo truly does trump everything, even Crazy Bob.
And before I know it I have chemo running through my veins, and it feels like a life changing moment. I'm actually having chemo. Me. It really is true. Blimey. What a fucked up shitstorm this is.
I'll spare you from re-living the moment the steroids went in and hit my sphincter but I captured it on twitter for posterity.
For some reason my chemo is cloaked in a black sheath, I'm quite excited that I have stealth ninja chemo going on rather than your regular run of the mill version. But I'm nervous that Crazy Bob has had a hand in it somehow and that this whole side ward is Special Ops exercise.
I mean, if Jack Bauer were to turn up, I wouldn't ask him to leave, but on the whole, I've probably got enough drama going on today.
Crazy Bob is now chatting to the man oppostie about Vietnam and his part in it. There is a palpable air of scepticism, it has to be said, but Bob is adamant he was there and played a key part. But obviously he cant give us the details or he'd have to kill us. At once my head is filled with the Cruella de Ville theme with a Crazy Bob remix
If it doesn't kill you
Crazy Bob will
I'm not sure if it's the drugs, but there is a definite edgy vibe to today. I'm ill at ease but rolling with it.
Half an hour later and Crazy Bob is done. The Nigel the nurse unhooks him wishes him well, but Bob is looking decidedly comfy. 20 minutes later, Bob is still writing in his notebook and showing no signs of sodding off. Nigel adopts a sterner tone.
"Bob," he says "I'm going to the next ward now. I'll be about 15 minutes, and I'll say goodbye now, because you'll be gone by the time I get back".
I sense this is not the first time that Bob and Nigel have had this conversation. Bob waves Nigel off and starts to get up. Then he sits back down on the visitor chair, turns to the lady on his right hand side and asks if she plays the organ. She doesn't, it was a slim chance, but Bob has his opening. He's a master at his craft.
Crazy Bob is, as chance would have it, learning to play the organ, and has already mastered 5 tunes with one finger. He is now learning 2 chords and has great hopes for future musical endeavours. The lady is engaged and laughing. Bob is in major 7th heaven (do you see what I did there? My music A level wasn't entirely wasted after all) and to be honest, I'm just delighted that he seems to have given up on me.
Nigel walks past, looks in and sighs. He decides the lady needs urgent and unnecessary obs, and decides to take her blood pressure. This involves Bob having to leave the visitor chair. He attempts to head back to his chemo chair but Nigel is way ahead of him. Eileen is already there, wiping Bob's chair down ready for the next patient and Bob has nowhere to go but home, wherever that may be. He shrugs a resigned shrug and bids farewell to all of us. Nigel has outmanouevred him on this occasion, but Bob will be back next week, and the challenge will be fresh.
But that was last week. This week I've got an afternoon slot and there's no sign of Crazy Bob. Nigel is looking smug and happy, so I'm guessing things (i.e. Bob) went well.
Things arent going well though, and I can tell that today has been one of those days. That's the thing with cancer treatment, people get sick, often, and things dont go to plan. Today has clearly been a tough one and the nursing team are flagging but valiantly keeping on. It's two hours before I make it to a chemo seat and we're having a hoohah.
My chemo will take at least 2 hours, and I still have to get to Radiotherapy and back, but Radio closes at 5, and it's 3.30 already. Phone calls are being made. I'm plugged into fluids via a drip, but the ninja chemo itself hasnt started yet.
Radiotherapy have called back and they can see me now, like instantly, so I'm to be unplugged from the drip, sent down to get nuked, then I'm to come back for more fluids and chemo afterwards. It'll mean someone has to stay late with me, but the Ward Sister is very happy to stay and keep me company whilst she finishes a mound of paperwork. They're apologising to me for some reason but I'm totally fine. This is the most exciting thing to happen to me in ages. The ward is agog with these unheard of shenanigans and they're cheering me on as I get to escape, like a year 9 truant sneaking out of double geography.
I'm unplugged and free! The lady opposite tells me to run for the hills while I still can. The man in the next chair asks if he can come too as shotgun, and the old gent opposite offers me his scooter as a getaway vehicle. Ah, so he's the dude with the scooter. Respect.
I make my way to Radiotherapy where the crew are waiting for me. Radio Rita is shocked at the disorganisation up at Camp Chemo, this would never happen in her micro-scheduled world, where Boyzone oozes over the beige and aqua soft furnishings and the only sense of panic is the sound of the toilet doors closing as enemas take effect.
Team Radio are swift and skilled and I'm on the table, nuked and out again in 20 minutes. I sneak into the cafe on the way past and grab a sandwich as I suspect there wont be any spares today.
Back on the ward and I'm plugged in as the last of the afternoon patients make their way home. There's me and 2 nurses sent on the twilight shift and the peace and quiet is wonderful.
Mr G is on standby to pick me up in an hour or so and we're on the home straight. I've got this.