So, where were we? I think when we last spoke I was re-writing the NHS patient charter to be a bit more about the patient and less about the charter, but I realise that may be a longer-term project and so I don't have any updates just yet! Of course now I have blogged about it and posted it, it’s surely only a matter of time before the boss of the NHS reads my thoughts and makes the necessary amendments, right?
In the meantime I have been waiting for various results and scans and have also been Defying Medical Science. Good news first. I finally heard back from the gynae nurse after the MDT meeting, and the pelvic CT scan showed ‘nothing of concern’ which means that it looks like the cervical cancer has not spread. Hurrah! Finally a break. I mean, having two concurrent primary cancers is probably as far away from a break as you can get, but I’m taking any breaks I can, however small. So far, my gynae nurse and I haven’t bonded, in the way that Dorothy and the Wicked Witch of the West never really bonded (cast it how you like, but just make sure I get the ruby slippers and the little dog). I doubt we will, but it seems like she’s got herself a speaking part in my soap opera, so we’re going to have to just tolerate her for now. Let’s call her ‘Sue’, and when you say it you have to give an acidic smile and crinkle your eyes whilst leaning your head to one side. Go on, try it. That’s it. That’s Sue.
Sue tells me the 'nothing of concern' news and also that the scan did find a cyst on my liver which is almost certainly benign (welcome to the story, Liver, nice to have you on board). But I have to have yet another MRI scan to make doubly certain. It seems that as I now have two cancers, I have achieved something akin to an Access All Areas pass at the NHS, and am now a gold level customer. Every tiny thing I have will be referred on, just in case, and whilst this caution feels reassuring, the truth is that it’s there because I really am in the very high risk corner of the graph now, and probably will be for a very long time. Oh well, at least I have a car park permit.
But just when you start getting used to being something special, Sue is there to bring you back down to earth. She tells me I’m not unique, 'actually' (I beg to differ, 'actually') and that they’ve dealt with ladies with two cancers before and they’ll do it again. There was an unspoken “jolly well” in that last phrase which you can sprinkle at will. I have been reading Enid Blyton lately to while away the hours, and Sue would almost certainly have been the matron of a girls’ boarding school in a former life, whilst I would almost certainly have been the girl who was made to mend everyone’s sheets after getting caught sneaking a goat into the common room. I wouldn't have mended the sheets, by the way, I would have sold tickets for goat hugs and earned the money to buy cakes and new sheets, instead. New sheets which the goat would then have eaten and the cycle would have started again. But that's another reality.
But whatever Sue says, it seems that my body has decided to become the exception to the rule, the 1 in 100, the “very occasionally” person listed on the side effects list. Let me explain:
Pete the Picc
Peter the Picc line had been nothing but trouble since he first entered the room. Darcie and I have a cast list of players in our cancer panto. You’ve already met Stuart and Fucktard the tumours, but we also have Sean the Seroma (now deceased), Peter the Picc, Lewis the Lymph Node and Bernie the Bald Patch. Sir Vic the Cervix is a new addition to the cast, along with the ugly sisters Titania and Faniella (Tit and Fanny for short).
Anyway, for some reason Peter and me never got on. From day one I reacted badly to the alcohol swab they used to clean my arm, then I also reacted to the first dressing. Once you have a picc line you have to get it cleaned, flushed and re-dressed every week or so, even if you're not having chemo. The next week we tried a new dressing but that too made the skin around Pete all red and puffy and to be honest, he started to smell a bit funky. This is unusual, apparently, but hey, so am I. The next week we stripped it right down to the most basic dressing and all seemed well for 5 days. But after my CT scan, Pete developed a definite ooze. I think it was the contrast dye they put in it for the scan, but the hosp are having none of it. Pete is just a bit of an arse. Three trips to the chemo ward and a lot of itchy yellow stuff later, it is decided that I need antibiotics. Sepsis is a real risk with picc lines and cancer treatments, but the chemo ward doesn't have any doctors, so I have to wait to be referred to the emergency day ward to be seen by a doc. My solution would have been to rip the fucker out, but the chemo team are little less gung-ho and want to try and keep Pete alive at all costs. I guess it comes with the territory,
By this time, I now have met everyone in the chemo department at least twice, as each of them has come to look at Pete, make a variety of “oooh” sounds and tell me how nasty that looks. Several have also told me how unlucky I am, and what a tough time I’m having. Thanks for that guys. The exception is the glorious lady who brings the tea and snacks, who has taken a shine to me, and who greets me every time with a very loud and exuberant “Heeellarreeeee” and a proclamation on my outfit (always positive), my hair (I’m so lucky, it’s so curly etc) and offers of tea and sandwiches. We love her deeply even though we would quite like to sneak in and out unnoticed. But it seems I'm destined for medical celebrity, so I will take the tiara and accept that if something medically unpleasant and unlikely is going to happen to someone, it's going to happen to me.
Always Take The Sandwich
Foolishly I usually turn down the sandwich offer, thinking that I won’t be there long enough to need one. In life, my optimism often overrides my realism and this is a perfect example. After spending the total of 2 days in the chemo ward this week, for what I thought would be 20 minute nip-ins, my advice to anyone starting a cancer journey is this: Always take the sandwich.
So anyway, I eventually get referred to the emergency day ward and after telling 3 separate non-chemo nurses my whole story, 3 times over (ooh you are having a tough time, aren’t you, that's so unusual x 3) I get to see a doctor. And what a doctor he is. Tall, slim and spanish, dressed in a black shirt, tight black waistcoat and black trousers, with very pointy black boots, this guy is living the matador dream. He actually clicks his heels at the end of every sentence, and I’m fully expecting the hair flick, but sadly he's got a crop. It doesn't suit him, he could totally rock the hair flick. I should tell him, but the tea trolley arrives and I grab one, because right now, tea is more important than more or less anything else in the universe. I am offered a sandwich but the total wanker inside my head refuses, again and maintains the belief that I'll be done in a few minutes.
An hour later I’m free and armed with a prescription for antibiotics. Fucking enormous chonker antibiotics, and apparently I’m supposed to take two of them, every 6 hours. Even as she says it, the pharmacist knows that the chances of me waking up in the night just to down these lads are slim, so she grudgingly offers an “or as close as you can” clause, which I accept, with little grace. I get home and spend a happy 5 minutes adding the chonky boys to their appropriate compartment in my old man pill organiser (see, scoffers, it was a totally valid investment and is also rainbow coloured, which brings me joy), and I set the reminder on my new cancer app (I know, I know, don’t judge me) to take my new meds. I’m now on 14 tablets a day, so taking them all at the right time is a military operation, and a pain in the arse. I have learnt to my cost that taking ‘before meals’ tablets after meals, and vice versa, is unwise in the extreme, and as 3 of my medications now cause diarrhoea and one flatulence, I’m already walking the tightrope of fear on an hourly basis.
There's Something Else
48 hours later and Pete is starting to clear up a bit. The itching has stopped and the goo has dried up to a crusty residue. 48 hours and 1 minute later the phone rings. It’s the Matron from the chemo ward. She asks me if the doc prescribed the antibiotics, and if so what type. Honestly, he is in the ward next door to her. OK, NHS, I’ll play along, but if your nurses need to phone the patient to find out what the doctor in the next ward prescribed, then we have something of a comms issue to address, don’t we? But then she pauses and says there’s something else. She’s really sorry, but it seems that the CT scan showed that the internal end of my picc line is too close to my heart, and it needs to come out. Quickly. Can I come down today? Maybe now?
Snakes a-bloody-live, but this is truly taking the shit train from shitsville on a whole new trip. For someone who isn’t having chemo at the moment, I seem to be spending more time at the chemo ward than the chemo staff themselves. I underestimated Pete - I had only thought about his visible end, but of course he's got an arse end too, and it's hoping for a mention by threatening to stab me in the heart. Thanks Pete. So back I go, back to my regular parking space, to my regular chair in the waiting room, to my regular recliner seat/bed thing in my regular bay, and within 20 minutes, Pete has met his maker. Well, to be honest, Pete has met a clinical waste disposal unit, and I have a hole in my arm and a sense of relief that the utter twat that was Pete the Picc will never bother me again.
Once I get a new chemo start date, I’m going to get a port instead of a picc line, (stage name to be determined) but for now I’m free! Free to wear short sleeve tops, free to go 48 hours without a trip to the chemo ward (touch wood) and free to put both arms in the bath at the same time without one being covered in an enormous plastic condom. Woohoo! Of course, me being me, I still have to keep taking the chonky antibiotics for another 4 days, to treat an infection in a line that doesn't exist any more, but frankly, if it’s a choice between that and having a rogue catheter pierce my heart then I’ll take the sharting meds option every time.
Next day I’m back at the hospital again, (Mr G is delighted with the added value we’re getting from the free car parking token) for a Radiography planning CT. This is where they lay you down on a slab, in front of the big white doughnut machine (looks like a doughnut, doesn't dispense doughnuts, just in case you thought I'd cut a break) and manouvre you with foot rests, arm rests and pillows into the position that you will be in for every one of your radiotherapy sessions. It’s vital that they get the same position every time, to keep the treatment to the smallest area possible, so they then have to mark you up with a felt tip and give you three teeny tiny tattoo dots so the machine can line you up exactly. It’s a very odd experience, but not unpleasant when compared to the hell of an MRI scan. Think of it as the Mad Hatter tea cups ride as opposed to the Saw of Death rollercoaster.
I have had 2 MRI scans now and I deliberately haven’t blogged about them. There are a few people who read my blog who are just starting out on their cancer treatment, and I try to blog about my experiences honestly and hope it helps them to get a feel for how it really is. My first MRI scan was utterly and terrifyingly horrific. I’m not going to relive it here because I hated it, and because I don’t want to give an unfair description of it to anyone who hasn't had one. Or to make them run for the hills screaming.
So back to the CT scan. I now have 3 teeny weeny tattoos and now we have to do some breathing exercises. As my first bout of radio will be to nuke the breast cancer, they have to be very careful of not nuking my heart at the same time. The solution is to get me to breathe deeply so that the chest wall raises up high enough to make a gap between the nuke site and the heart. So I have to breathe deeply and hold my breath. 5 times in a row. Each time the radiographers seem a little miffed, but heck I played the clarinet at school, I know how to breathe deeply. It seems, however, that I breathe too well, from my diaphragm in fact, whilst most people breathe from higher up in their chest. Which is excellent for playing the clarinet, but a bit shit for not getting your heart nuked. Oh, how wonderful and surprising, I'm one of the unusual, unlucky ones again. But apparently it’s not a huge issue (I beg to fucking differ, sunshine) and there are ways round it. I ask what those ways are and it turns out that the radiographers just have to be really careful to aim the nuking machine at the right bits. Well, that’s reassuring, isn’t it?
I park that piece of information way at the back of my mind, in the ‘Scary As Shit Stuff You Can’t Handle So Just Have Blind Faith In The NHS’ List and focus on the positives. I finally have a date for the start of the breast radiotherapy, and it feels like I’m finally on the way.
I’ll save the joys of what the cervical radiotherapy might bring for another day, a day when you haven’t eaten and are feeling particularly brave. Don’t worry, I’ll warn you, but there will be talk of bladders, bowls, internal scorching and a voyage of discovery to the world of dilators. And don’t even think about wimping out on me now. You said you’d be there every step, and I’m sure as heck going to need you with me. So wherever this path takes us, let’s walk it. Even if we walk if with a wince and a somewhat padded undercarriage.