Rolling With The Lows

When I started writing this blog, I promised myself I’d be honest about what I was going through. Hence the tag line ‘the highs, lows and slows of yet another cancer fighter’ – I really do want to embrace vulnerability, which I see as vital to getting through all of this utter shit.

Today I broke down. I continue to sob as I write this.

A series of unfortunate events this morning, including my dog getting attacked, my dad getting hurt, my partner getting irritated at me and my G-CSF injection being delayed all came together and, with the realisation that I haven’t been alone in weeks, everything felt too much to deal with.

Yes, I am sick, and I have cancer. Yes, my life for the foreseeable future has to change and I must be flexible about it lest I snap. But I’m still a fiercely independent, introverted, 30 year old only child who is used to having their own space, and who requires time to themselves. I’m still me, even though some days I struggle to remember who that is.

I am lucky. I am surrounded by love and support – my parents, my partner, his family, and my friends have rallied in ways I couldn’t even have imagined.

Mum and Dad have uprooted their lives to come and be with me, to look after me. Barney has taken it all, including having the potential in-laws move in, in his gentle and understanding stride. His brother Finn, who also lives with us, has been there to make me laugh and hasn’t once grumbled about how our household has suddenly changed and become somewhere overtaken by antibacterial gel and rules about what is allowed in the fridge. Tracie (mum to Barney and Finn) and her partner Nick have bent over backwards to make the medical side of things less intimidating, to wrangle appointments and to do everything in their power to just be there. In particular, Tracie has been there to help try and keep me sane – messaging me with a level of humour and comprehension that has amazed and touched me.

I say this so anyone reading, including those mentioned above, know how eternally grateful I am to have these people in my life, and to have them here now beside me. I’m scared to come off as an ungrateful, miserable cow. I promise you I’m not. I’m just human and struggling right now.

As I type this on my phone, I am sat huddled in the shower. This has become my refuge, because it’s the only place I can actually feel a semblance of solitude at the moment. The only place I can collect my thoughts without well meaning interruptions, reminders about medication, questions about symptoms or just the silent but ever-there presence of someone.

Due to the concern around my compromised immune system, I’m not allowed into town or to the pub. I can’t pop to the cafe down the road, nor do a supermarket run.

Thanks to the cancer in my spine, hip, and pelvis, I can’t even go for a walk by myself; not because I’d be unable (I’m sure I’d be absolutely fine) but because of how much worry it causes for those at home. I’m not even allowed to take a shower without someone close by in case I fall.

With the best will in the world, on days like today I can’t help but feel like I’m in a loving, guilded cage.

It’s something that will need to be addressed, and soon – for the sake of everyone’s wellbeing, but particularly for my own mental health.

I understand completely the urge to protect and wrap in cotton wool someone you love who is facing something so unpredictable and unknown. I understand the urge to want to control the situation as much as possible, and to feel as though you must do something, anything, all of the things to help and to be useful and to lighten the load. I do understand that.

But from my point of view, I have already lost so much, too much, agency.

I have lost so much control thanks to this diagnosis. I no longer feel as though I am in charge of my body; the cancer is, which reminds me with every passing twinge of pain that it has invaded me. The medical teams are, who tell me where and when to be somewhere. Or the medication is, which I must take at certain times and in certain dosages, and makes me crave food and put on weight in a way I’d never have tolerated before. Or my diagnosis in general is, because it influences what I should or shouldn’t eat, how much water I must drink, what limitations I must adhere to with exercise, how I can use my body and how it can be used.

Sometimes I feel like my mind is renting a small square footage of my body. It has become communal property. Some of the tenants are part of a cooperative to keep it in good condition. Some are saboteurs. But everyone has a say.

I want my body back.

3 thoughts on “Rolling With The Lows

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  1. I’m reading you out of order as you started your blog while I was in London, so I may repeat myself once I go back to the begining. I find that despite your struggles, you’ve been really brave with all this. I know that I freaked out for much lesser cancer, and that I wouldn’t be doing ok at all with anything more than what I had. So, I can only imagine what you are going through & find very natural that you’d feel these mixed feelings of gratitude but also the need for your space, and wishing to regain control of your body and of your life.

    I’m sure your family and friends will understand and though they’ll continue to help you, if you ask for a little space, am sure they’ll accept, with some realistic precautions. Once you are through this shit of cancer, and you recover, regain energy, strength and mobility, you’ll regain more of your independance and do what you always did and possibly eve more so, as such experiences tend to create a surge once the illness is beaten to where it belongs: nothingness.

    And you will beat it, you got a medical team, treatment, family and friends all helping, and since unity is a powerful thing, you can fight this cancer, and beat it out of your body! “sayonara, don’t come back, don’t send post cards, just stay away, cancer”.

    It’s ok to be honnest and meh, you’re human Cerian, even when at times you are a super-human, you remain human, and humane, and kind, and since you helped others, it’s normal to expect some help, and some space, whenever it’s possible. For the moment, you’ve got to focus on your healing, and on prevention. You will have your day back in the sun, back in the garden, back in the supermarket and you won’t need supervision, but until then, you are cared for & loved.

    I love you my friend, never hesitate to reach out, when you need me.

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  2. I am reading this 3000 miles away, Kuwait, where I’ve been working for the last two years. Alone. My ex wife remains in the UK with our boys, aged 3 and a half and 1 (on 25th).
    But it’s not miles that separate people. It’s circumstances. Your loved ones can be in the next room, but they will never understand how this sickness is really affecting you because you’ll always shield them from the real pain, terror, anger, blog or no blog.
    When I was a teen, I was diagnosed with a life-changing genetic defect. Not life-threatening, but it certainly put a crimp in my life for a long time. My mother turned into a she-wolf, making every attempt to find a cure, then find a solution when she found there was no cure. Way too many doctors’ desks had indentations in them from where she thumped so hard. I found myself taking strength from her, but in that strength, falsely allaying her fears regarding my pain levels and mobility. She made the medical decisions, not me.
    Almost 40 years on, I still do it. The Skype calls to my parents are bright and breezy, everything is fine, I’m doing well. But my body is still not fully my own.
    My wishes for you: remission is swift and prolonged. Love is deep and fulfilled. Strength and weakness are in equal measures.
    You will have your body back at some stage, but there will always be a part of it that will belong to those who will travel this road with you. Take comfort from that.
    Jules xx

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  3. I spent a large portion of my treatment in hospital with just the odd respite of being at home for a few days at a time. On one of those occasions, I was having a shower when I suddenly burst into tears. I was doing an everyday thing when it dawned on me that I was doing it in my own home, in my own shower, in my own space. I had forgotten what that was like and when I realised that the emotion that came with it was overwhelming. That was two years ago. I still have some issues with memory (I slipped into a coma after the surgery to remove the tumour) and with co-ordination. I still have moments when I feel terribly vulnerable. I get deeply frustrated and angry (mostly with myself). Every time I do, I feel guilty, as if it’s a sign of me not appreciating everything the doctors and nurses did for me. So I have to remind myself that getting angry is normal and natural. Some things I can’t do anymore but I keep trying anyway. You’re entitled to feel down, to feel angry, to be frustrated. Never let anyone tell you otherwise, including yourself. If you want to express it, do it. If you want to scream and shout about it, do it. If you want to smash dinner plates, do it. So long as there’s someone there to help clean it up. When you have a good day, you don’t deny yourself a laugh, so don’t deny yourself a scream or a cry on a bad day. Once you’ve done that, go and lie down and have a rest. You’ve earned it.

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