It’s been 11 days since the phone call, the one where I found out I probably have another cancer on top of the one I already have. And although it feels like the longest 11 days of my life, it also feels like time has stood still. Things have happened, life has ticked on by, but I haven’t moved forward at all. Right at the beginning of this cancer crap (it’s not a journey, it’s a crapfest) someone said to me “there will be good days and there will be bad days”, but the ups and downs are far more frequent.
I can go from having moments, minutes, sometimes up to 15 or 20, of almost forgetting - of getting lost in a film, or a game, or a daft escapade with the kids, where I don’t think about cancer at all. But sooner or later, usually sooner, a word or a gesture or a comment will bring it back. Our expectations of everything are based around not dying any time soon. Our appreciation of art, literature, beauty, joy are all based around our life experiences to date. What resonates and touches us are those things that speak to the experiences and values that have shaped our lives. Once you have cancer, all of that changes.
It’s like having children. Well, cancer isn’t like having children, obviously. I mean, there is pain and a lot of crying, blood, goo, complete strangers putting their hands in fingers in places you really don’t want them to, ultrasounds, fear, tests, medical monitoring, multiple visits to hospitals, flowers, gifts, weird cravings, banned foods and new bulky things to put in your underwear. So some similarities I suppose, but I meant the life changing moment stuff.
Once you have a child, everything in your life changes. Your focus shifts. Everything is about the child, and your place in the universe shifts irrevocably. Cancer is like that. It’s all you can talk about, it commands your every move. It keeps you up in the night, pacing the floors, and every murmur, every noise, every faintly new thing has you panic-googling, expecting disaster. And without realising it, you find yourself with new friends, hanging out at places with other parents, people like you, seeking out companionship with those who understand all the complexities of this new thing that has come to live with you.
Your old friends send you love and get in touch and you love to hear from them. You chat and hang out, but they don’t have kids and although they’re interested, they talk about other stuff too, but you find you’re less interested in chat about work, social issues, politics, all the things you used to be passionate about, and you know you’re probably boring their pants off, banging on and on about your new specialist subject, but you just can’t stop yourself. You also make new friends through the cancer equivalent of NCT classes - the online cancer groups - and you know that the connections and friends you make now will last you a lifetime.
I’m not sure where I’m going with this analogy really, other than to try to explain how life changes, instantly, once you hear the words that you have cancer. There is no going back to how things were. And me? Well it looks like I’m expecting again. So soon after the first one? Haha, yes, it wasn’t planned. You’ll have your hands full! Ha, yes, won’t I just. Etc.
I’m filling my days with something and nothing. There is usually an appointment for something or other, blood tests, line flushing, injections, wigs, or phone calls to make or receive, so don’t ever think that cancer clears your schedule.
Since my chemo was suspended my gynae team have gone into stealth mode. They’ll tell me nothing, not even to hint at which of my two biopsies was the iffy one. I had a difficult phone call with the gynae nurse where I asked a number of direct questions and she deflected every one of them. Apparently gynae is ‘very complicated’, much more so than breast cancer (which is pretty fucking complicated, believe me) so basically I’m to get back in my box, stop asking difficult questions that she is unable to answer (through a combination of not being allowed to and not being able to, my assessment was 70:30) and wait my turn. None of those are character traits that I possess or aspire to.
I have a whole other blog, book, campaign inside me about ownership of cancer, which I will formulate at some point soon, about the way the system leaves the patient as a CCed recipient of information on their medical condition, rather than the living breathing heart of it, but that’s for another angrier day.
So even though I’m glaring at Team Gynae from under my suspicious raised right eyebrow, my Team Breast has been awesome. I have been switched over to the lead oncologist because I’m now ‘complex’. Anyone who knows me could have told them this a long time ago, but I’m glad they’ve caught up. Head Honco (sorry, no excuses) called me and explained the revised plan. Chemo is being paused in case the ‘gynae issues’ turn out to require a ‘surgical solution’. Chemo would give me zero immunity to infection, so surgery during chemo is a bad plan. So until we have an outcome from Team G, we are in a holding pattern.
But, Team B aren't ones to sit around waiting, so we’ve started the Herceptin injections that I would have had parallel to chemo, (Herceptin works by attaching itself to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals). I’m also taking Letrozole (oestrogen blockers, as my type of cancer is fed by oestrogen) which I will be on for at least 5 years, and calcium tablets to counteract the effects of the loss of oestrogen on my joints and bones.
This is great news, because at least something is happening, and I don’t feel so utterly helpless. Head Honco has boosted my mood considerably. The excitement of receiving new tablets and putting them into my old man tablet holder has cheered me up no end. I’ve also been advised to take Omega 3 capsules for joint pain, so I found a super duper deal on Holland and Barrett for a shedload of max strength capsules on a ‘buy one get one for a penny offer’. Freaking bargain. They arrived the next day, and 2 things happened:
My cats became very interested in the new faintly fishy aroma of the enormous jars that just arrived and attempted to swarm me to get to the fishy prizes within. They soon realised they weren’t Dreamies and disdainfully left, pausing only to fight over the cardboard box they came in.
I realised that Max Strength also means Max Size and the capsules that I have ordered are the size of baby porpoises. I check, and check again, that these are indeed intended for oral consumption and not to be taken via any other orifice and I wonder which would be the lesser of the 2 evils.
Fig 1: Freaking enormous monster porpoise, shown with normal size friend.
I brace myself and swallow it and it seems allegorical for the majority of my year so far. Brace and swallow. Not only do you have to swallow a baby porpoise, you have to do it every day for the next 5 years. Maybe more. And because I now know that baby porpoises can be swallowed, I’m fully expecting a call from the hospital to ask me to come in and collect an annual supply of stingray suppositories. You may snigger, but I’ve spent some dark hours on the cervical cancer sites, and if you thought Breast Cancer hit you in the squeamishes, you have no idea what squeamishes are, or what colour and consistency they can become. But fingers in ears, la la la la, I’m not listening, cross that bridge, head in sand, not going there. Where were we?
This late change of plan has caused havoc with my treatment wardrobe plans. I had my long stay, chemo-friendly, super-cosy, easy arm accessible outfit ready and waiting. But instead I’m now going for the injection only option, which Google tells me goes into your thigh and not your arm. Even though I have a PICC line fitted which was supposed to do away with injections, but hey, I’m not bitter.
So I have to make a rapid re-assessment and opt for a wrap dress. The chemo ward is communal and I’m slightly freaked about the idea that I might have to drop my trousers in front of some very elderly gentlemen who are already suffering enough. So knowing they won’t need to hook my arm up to anything, I choose a mid length dress with long sleeves that will allow me to stealthily pull the wrap section aside to reveal a thigh, when the time comes. This is the first time I’ve worn a dress in many months, and I feel like I’m going to work, but the vibe gives me a sense of power and strength that I’ve also missed, so I roll with it, despite the fact that it means I have to wear lady shoes and not DMs. Sad times.
I’m sat on the ward, on the couch chair thing of doom, speed-texting Darcey, who is having her first chemo session today, in another part of the country. We were going to be chemo buds together, but instead she’s out there on her own, braving it like a superhero, and I’m sat here waiting for a single injection. I’m feeling like a bit of a fraud, but I’m waving my virtual pom poms for her, and cheering her on from afar. I’m so, so lucky to have found this amazing woman, who inspires me daily, about 120 times a day actually, and she is cheering right back at me as she endures the torture of having a cold cap tightened to her skull and sub sezo chemicals pumped around her head.
Cold capping is a process which attempts to freeze the hair follicles so the chemo doesn’t get to them which, in turn, helps to stop hair loss. Chemo kills hair follicles, hence the bald stereotpye cancer victim thing.
Darcey is far braver than me for trying cold-capping. I know I’d rip the fucker off my head in seconds, and lob it in the nearest bin, but she’s punching through the pain to try and keep her hair. Not for vanity’s sake, hell no, she doesn’t care about that. She’s doing it all to make life as easy, normal and non-scary as possible for her little girl. And I utterly, totally love her for it. She sends me a photo of herself with the contraception on her head and my heart breaks a little bit. Her beautiful face is hidden by an ugly gray helmet and she’s huddled under a blanket. It’s the first time I haven't seen her smiling, and it all suddenly feels very realm and fucking horrific.
Little Miss Lightweight
Around me the other patients are getting hooked up to their various chemo drips and seem resigned to a long haul. I, Little Miss Lightweight, am given the onerous task of taking an antihistamine tablet. The tea trolley arrives and I take the tea, but refuse the biscuit offer. I clearly haven't earned the right to a free NHS biscuit, so I step away and bow my head to acknowledge the superiority of my fellow inmates.
The nurse comes and asks if I have a port for injections. I say no, I had a PICC line. She says “great”, and goes and gets the injection out of the fridge. So now I’m in proper full on panic mode. She’s going to use the PICC line for the injection. But I’m wearing long sleeves which I can’t roll up, and a wrap dress, so instead of the single fabric flick I had planned, I’m now going to have to get fully undressed and stand in my pants and vest, like a forgettable year 3 who left their PE kit at home, in front of Eric and Roger (72 and 78) so she can give me an injection in my arm. Hell bollocking fire, why am I like this?
After a hellish 30 minutes she returns, and checks me for reactions. I don’t have any physical ones and I’m praying she can’t spot the psychological ones. Then with a throwaway comment she tells me the injection does need to go in my thigh, and she simultaneously notes that my blood pressure is a little higher than it was. Yes, I can explain that. I expect it’ll be going down again soon. The injection takes about 5 minutes to go in and it stings a bit, but it’s no more irritating than a call from a photocopying sales person who managed to bypass switchboard.
I have to wait another 30 minutes to see that I don’t react to the injection (I’m suffering with this whole lack of reaction thing, I prefer to voice my opinions and reactions as I have them, not hide them) and then, after 3 hours of waiting and not very much action, I’m done, I'm out, and I’m full of cancer-busting nano warriors who are now on my team. It feels good. Well, it feels better than it did before when it was me and the guy with the scythe, that’s for sure.
And so now at least, the fight is on again. There are few more days to wait until I hear the next life changing news, but for now, at least, I’m sticking my flag in this tiny piece of ground and claiming it as mine.
Brilliant, as usual. Glad to know you are doing (kind of) OK. The porpoises are a lot more friendly than the man in black with the scythe who stands by my bed sometimes. My husband says I imagine this. I thought being full of oestrogen was a good thing, but it has proved not to be for us.
I've been reading you're blog during my cancer journey and it has helped me so much.
Oops I posted too soon. I'm so sorry to read of the latest development and hope you get some positive news soon.
OK I've now learnt the return key posts and doesn't move me down a row. What I wanted to say is I've had your journey in reverse so I can totally understand where you're coming from. I had abnormal bleeding in October, tests revealed abnormal /Stage 1 cancer cells in November and on December 17th I had a hysterectomy. I was very lucky and found out just before the new year everything was good and I needed no further treatment. Yippee I thought but fate thought otherwise. Three days later I found a lump in my left breast which turned out to be stage 3 TNBC. Almost 2 months to the day I had a mastectomy and I've just had my second chemotherapy. Too say its been a rollercoaster and challenging is an understatement. I sincerely hope you get good results and can continue with your treatment plan. Take care.
Blue Oyster Cult - Don't Fear The Reaper (Single Version) (1976) (HD) - YouTube
Seems appropriate. Blue Oyster Cult to go with the porpoises.
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