The C-list

Why is the end of cancer treatment so often the hardest part of the whole journey? Is PTSD a real thing when it comes to cancer? I think so...

My treatment for breast cancer has been going on for over a year now...it's no wonder everyone is getting bored. Cancer fatigue? What's that all about?

When I had my surgery and chemotherapy it reminded me of when I had my first baby. There were flowers, cards, lasagne deliveries with general well wishes and high fives all round. I felt like a minor celebrity in my own home. Behind closed doors I was shattered from the treatment but I knew I was McLoved. Fast forward 9 months and baby number two arrives...also known as Radiotherapy....no flowers this time (stamp stamp) but I did get some offers of lifts plus the odd homemade sausage roll (thanks Jodie). No complaints there but the love and attention was fading fast. They've been there, seen it and done it with the firstborn right? Plus I'M BORED of it too so I get it. Well now i'm on my targeted therapy which sees me in hospital all day every three weeks and frankly knocks my stomach sideways...I feel a bit like i'm on baby number three and the attention fatigue has kicked in. For those of you insane enough to have more than two kids you'll know what I mean. The love and attention levels start to wane. It's like everyone around me thinks 'Oh she's alright, she's an old hat at this lark now' 'Baby number 1 (chemo) was the hardest, she'll breeze with the 3rd'.

As a note, my actual baby number 3 was so challenging for so many different reasons. She was an active one and I still had two toddlers running around like nutters so I couldn't rest. I was knackered and lonely. I never craved attention more. A hug more. I know I probably sound like a petulant spoilt brat. Maybe I am? (Just going to end this paragraph here because i'm imagining you saying 'No Helen, you're ah-maze-ing'. Ta).

So this is how I feel, if i'm brutally honest about this third stage of my cancer medication. I think it's because most people have heard of chemo and radio but the other treatment can be just as hard to get through. I'm 16 months into it and i've still got another 3 months of regular hospital treatments to go. After my initial diagnosis I was straight into surgery and chemo that I couldn't really take it all in. Now the hardcore treatment has finished and the dust is settling slightly the whole episode is sinking in. I have nightmares of when I was told 'you've got cancer' and I have nightmares about it coming back. I'm not in the fight or flight mode now. I'm in a reflective, more pensive stage where i'm rethinking everything in my life. The treatment that i'm still on affects me physically but i'm so used to feeling ropey that I try not to make a fuss (only to you because frankly you're reading this). I get insatiably tired and often can't leave the house because of my stomach. I think what tipped me over the edge and the reason for me writing this is that for the first time my husband said to me on Friday:

'I've got an exercise bike being delivered today so I can't take you to hospital, you'll need to get an uber'.

Wow. Yeah fine. I'll just haul my arse into hospital for cancer cancer cancer treatment shall I. Did I mention I had cancer? Now Mark isn't an eejit at all but like everyone, this treatment of mine has been going on for over a year now. It's my new normal and everyone around me sees it as my normal. Plus i look so much better than I did and i'm not wearing a scarf on my head anymore...so most people think i'm fixed. A year ago it would've been unheard of for me to go for a scan, a test or a treatment on my own. I never dreamed that Alec Ali in his Black Toyota Prius RX20 3LJ would ever be my hospital buddy.

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Helen from The C List during Herceptin treatment in 2019

This isn't a moan, I love my friends and family dearly and they've been truly bloomin' tremendous. I just want to let people know that sometimes the hardest part of this cancer lark is after the major treatment. Depending on the diagnosis, around 1 in 7 breast cancer cases result in these 3 weekly Herceptin treatments (which i'm having now) and they go on for a year (sometimes more). It happens when the cancer is HER2 positive meaning there's a protein in the body which can feed cancer cells so this treatment acts like a bouncer on a nightclub door. 'If your name's cancer, you're not coming in'.

Then also in the aftermath of the chemo and radiotherapy often comes the joys of Tamoxifen. 70% of breast cancers are hormone receptor positive. In simple Titty Gritty terms it means that the cancer feeds off your hormones. So Tamoxifen is a daily tablet which works by locking onto the oestrogen receptors to block cancer cells from attaching to them. The oestrogen cannot then stimulate the cells to divide and grow. Bingo. But what are the side effects please? The menopause. That's a whole different hot flushy / dry fanny blog post for another time but what I will say is that I spent the best part of 9 months in chemo trying not to lose my hair and now i'm desperately trying not to grow a beard. Oh and i've turned into a prize bitch at times.

My final thought on this last leg of the cancer schmancer journey is that it's not surprising that 1 in 10 cancer patients go on to suffer from Post Traumatic Stress Disorder*. It's still fairly under researched but it makes utter sense to me. The shock of the diagnosis and the intensity of the treatment can be drastically life changing and more to the point, life threatening. So like after an horrific car accident or an unexpected bereavement, it's highly feasible to have the same PTSD response. It's equally important that cancer patients are given the same level of support after the trauma as with anyone else suffering from PTSD. Breast Cancer Care charity did a recent survey which noted that over half of all breast cancer patients suffered from depression afterwards and a quarter found the end of cancer treatment the hardest part. They're mind blowing stats right? I'm not entirely convinced that i've dodged this yet. In fact I know I haven't. There's definitely a certain expectation that cancer survivors should be grateful to be alive and of course we are but it doesn't take the fear or anxiety away. I honestly feel guilty if I feel down and I want others to know that they're not alone. There is help out there (see links below) but it feels really low key and needs to come up an octave or twenty.

Anyhooo, I hope this is enlightening and helpful and not my hormones (or lack of) making me sound like an ungrateful tit. I just wanted to highlight that the fat lady isn't singing yet....because the breast cancer shenanigans is often far from over. Boo.

HELPFUL COMMENTS TO FRIEND GOING THROUGH LATER STAGES OF TREATMENT