Betwixt Cancer - The New Normal

The sequel is never quite as good as the original but here is a little update from me anyway.

I guess the good news is that my consultants (I have 4) are confident they have managed to get rid of all cancer by cutting it out. Note the disclaimer here in the word ‘confident’, in case there are some nasty cells ‘doing the dirty’ somewhere else inside my body. I suppose they can never be sure. There is always a risk of secondary cancer, or of unrelated tumours cropping up. Officially I am still stage 3C. For those who have never been through this, the ‘C’ refers to the thickness of the cancer and to how far it has spread. In melanoma terms, 3C is pretty much as bad as it gets before it reaches any organs. They have managed to cut it out which means that I’ve dodged the bullet - for now. I have had to sacrifice at least a pound of flesh to the cancer gods which has left me with a very odd-shaped neck. Fingers crossed the CAT scan next week gives me good news and that my organs are still clear.

What should have been a straightforward operation to remove some lymph nodes and some of the remaining ear, turned into a full neck dissection. My surgery required an incision that stretched down towards my breastbone and right underneath my chin. I am left with a strange dent as if someone has carved a ‘v’ shaped channel down from the bottom of my ear to the top of my breastbone. I’m still bloody angry at my GP who refused to see me, and whom I will hold accountable for the severity of my situation. His sheer ineptitude has cost me dearly. It has also cost the NHS at least ￡150K in treatment that could have been entirely avoided had he bothered to see me when I asked him to.? I have to remain positive though so I push that anger to the back of my brain. I will leave it there to deal with later on down the line. Grrrrr...

People who have seen my scar tell me it’s not too bad and ‘hardly noticeable’. Most of the time I believe them. I don’t let it worry me, but then I go out and random children start to stare at me as if I’m a walking freakshow. Their honesty and instinctive reactions are quite refreshing and, dare I say, amusing. I’ve started to play along by poking my tongue out back at them. In most cases, they start to laugh, and then we end up both laughing, while the parents shush them away in embarrassment. It's quite good fun in a sick, black humour kind of way.?

While my cancer doesn’t define me, it has impacted my life.

Cancer has changed me physically with the visible scars now my battle wounds. A 3D-printed silicon ear will help me look a bit more normal in a few months. My doctors have greenlighted me to start the process, but it takes ages to happen, involving magnetic implants and all sorts of clever stuff. The wound marks will fade but I will always see the lacy skin snakes every time I look in the mirror. Hard fought and hard-won battle scars, and a daily reminder of one of what it took to survive this fecking disease.

The surgery has left weaknesses in my arm, neck, and shoulder. Some things are now quite uncomfortable and/or painful, and I have had to adjust. Stretching for things is impossible (I have a little stool in the kitchen now to reach the top cupboards and use a stick to poke at things that are out of reach). Simple things. Chopping vegetables, using a wooden spoon to stir cake mix, and lifting dishes and saucepans are things I used to do without thinking. I now have to ask for help, and anyone who knows me knows how frustrated that makes me. Washing, bathing, and dressing all now need adjustments. I cannot put clothes over my head so I’ve bought a new wardrobe full, all with pull-up straps. I’ve found myself in some ridiculous situations. I’ve trapped myself in a hoodie, got stuck in the bath, and almost knocked myself out with a kilo bag of fondant icing.? Have you ever tried using a drive-through with a dodgy shoulder? I’m the saddo who has to get out of the car and stand up against the window to get my salted caramel latte fix.? The stairs are not great either.? I now know how the Daleks felt.??

And I still have a very wonky smile.??

Cancer has changed the way that I live my life. There are things I can’t do as well, and things I can’t do at all (at least for now). My long daily walks are now a very rare treat, and significantly shorter when they do happen. Extreme tiredness and joint pain are a normal part of the treatment. I have limited my foraging efforts to what is immediately accessible and easy to reach. Gone are the days when I would traipse through the undergrowth and climb a few branches to reach a few more wild plums. Gardening has turned into a nocturnal activity as I avoid the UV ray gun in the sky. Even then, I can only do small bits at a time. I cannot do anything that involves strenuous activity; I’m effectively limited to planting, picking, and pruning. In the kitchen, I need adult supervision when using a knife. For some reason, I’ve forgotten how one works and I keep cutting myself. (Is 'cancer brain' a thing do you know? Or is this just the menopause?).? I’ve also taken to making sourdough rather than normal bread. There's a method in my madness. It requires less kneading so less physical effort but still tastes great.? I nearly lost Gerty (my starter) while I was in the hospital (I left explicit instructions for her care) and was very relieved when I was able to nurse her back from the brink as soon as they let me out. Priorities and all that.?

The biggest challenge of all has been psychological and I have had to come to terms with the fact that I am not superwoman after all.

For the first few weeks, I couldn’t look at myself in the mirror because I wasn’t ready to see the impact of the surgery. I know I had Frankenstein stitches and an open wound because other people told me. Surprisingly there was no dressing to hide the bloody obvious (and in this case, it was very bloody). When I eventually did look at myself, I locked myself away for half an hour and cried hard. Half an hour later I gave up on the self-pity and started to look for ways to distract myself. I took up cross stitch for a while like an old lady. It is the perfect low-effort activity for anyone recuperating and I highly recommend it. I’ve got some lovely samples of bees and giraffes that will serve as a permanent reminder of how hard it got for a while.

It took 4 months for me to pluck up the courage enough to touch my wounds without latex gloves on. Just how bizarre is that? I’m not squeamish at all, so I can’t quite work out what was going on in my head. It might have something to do with my complete phobia of dead things. I am still more or less numb all around the site of the operation and it doesn’t feel like my neck and shoulder belong to me. It’s starting to tingle which my consultants say is a good sign. I also get the occasional shooting pain, which is always good for comedy value in meetings when I jump up like I’ve had an electric shock.

And then there’s the language thing.

The words that we use to describe ourselves are often reflective of the things that are important to us. The phrases ‘working mother’ or ‘professional educator’ are ones I have used over the last 20 years. Words carry implicit connotations. Choosing the most appropriate descriptors is not an easy thing to do. I am unsure about how to explain my status at this point in my cancer journey. The word ‘survivor’ implies it’s all done and dusted and I’m out the other side, which I’m not. The word ‘patient’ invokes feelings of sympathy and pity, and I can do without both at this point. At what point does ‘remission’ kick in, and when will I be able to tell people I am ‘cancer-free’? I really want to ring that bloody bell so I really hope I get the chance.

At the moment, I tell people I have cancer but is that actually true after they have cut it all out of my body? I’m not pre-cancer or post-cancer – so I’ve invented my own descriptor: ‘betwixt-cancer’?

?????????

We often talk about disease in battle terms. It is as if we are fighting some invisible enemy. But what if I lose that battle and don’t survive? Would that make me weak? Did I not fight hard enough? Did I surrender too soon? Was it something that I could have avoided? I can honestly say it would piss me right off if I ‘lost’ my battle with cancer (family, take note just in case you need something to write in my obituary!). I am doing everything I can to get these nasty little cells out of my body and stop them from coming back. If I die, then fate has stepped in.? So, from my perspective, it needs to take some of the blame.

On the whole, my life is different from what it was before. Yes, there are some bad things, particularly in relation to the adjustments we have had to make. And I am deliberately using the word ‘we’ here. Long-term illness or disability is something that affects the whole family. Even the dogs have had to get used to the changes. The children have had to learn to load and unload the dishwasher and washing machine. I've run the other half ragged with his daily set of instructions and constant demands for tea (I can make it myself but once I’m settled, I can’t move). But I would be lying if I said it was all bad ( and he makes a great cup of tea).

This last year has taught me some powerful lessons about self-care and mindfulness. And while I know it sounds like a cheese-fest, it has taught me to value what I have and to never take things for granted.

I move on now with a renewed sense of purpose. A conversation with a colleague last week (you know who you are) made me realise how much I miss writing. So that’s something I need to get back to, starting with this little update. I haven’t had the head for it for a few months. It’s been another cathartic experience and I thank you all for caring enough to read it.

While the momentum is good, and I still have my strength, I start a new qualification in September. I’ve had the most incredible support from DVLA who have gone well beyond what I could have expected from an employer. I also have the most amazing team whose random ramblings and stoic silliness have helped keep me sane. I’m not sure anyone would make any sense of our conversations. We’re like a little family.? We instinctively all understand each other without needing to explain things.

My little pet project blog https://themadhousekitchen.wordpress.com/ that I started last year needs some proper attention. This is something I intend to do over the next couple of weeks. (Blatant plug, feel free to subscribe and to follow me on Instagram @themadhousekitchen). I’ve been waiting for a new computer, one where the return key works, and the touchpad actually scrolls (hint hint).? Bear with me while I sort that. I want to rearrange the theme and make it navigable before I upload any more content. But if you’re into cooking, gardening, or foraging you might want to take a look. In the meantime, I’ve spent my summer leave starting a little planning book (pictured above). I’ve gone ‘oldskool’ with a sharpy and a notebook but I’m having fun making it look pretty. It's been a long, long time since I did anything quite so creative and I'm rather proud of how it's working out. It's also purely practical. My fuzzy menopausal, immunotherapy brain requires all the help it can get. I needed to track all my madhousekitchen activities, so I came up with this nice little template.

Finally, you may have noticed a common theme here, and this is entirely deliberate on my part. I have no idea what my post-cancer life will look like and no doubt there will be further hurdles to overcome. In the meantime, I have a clear focus on the future – because a couple of months ago I didn’t know whether I had one or not.

So, it's all facing forward from now on, and looking out onto the horizon.?

I am betwixt cancer, and if you need me I’ll be in the garden...in the dark...with a torch...digging vegetables and looking for slugs. ?