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. I’m not going to lie. I kind of liked it. Behind closed doors I was shattered from the newborn/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 Abdul Ali in his Black Toyota Prius RX20 3LJ would ever be my hospital buddy.
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
How are you?
What’s the latest with your treatment?
Is there anything I can do to help?
When are you back to work?
Blimey it’s dragging on isn’t it?
Can you clean my car?
Useful links for advice after cancer treatment
I feel for you, but you know you are doing bloody amazing! I’ve had many dark days, but there is always a good day to come. I start my chemo on 4th September and I am starting already to wonder about how I will feel after. I keep telling myself, I’ll be done by Christmas, then radiotherapy in the new year, tamoxifen for 10 years…bish bash wallop, back of the net! But I’m so worried I’m going to get a smack in the face when it doesn’t quite work out that way! I too am worried about an impending beard sitch! Also, because I’ve been telling everyone that the cancer has been removed, and I’m just doing chemo as a belt and braces exercise, oncologists words, what if it does go wrong? Is everyone going to be mad?! Just remember how far you’ve come, and how much inspiration you have given to others, and without sounding too dramatic, lives you will have saved because of your campaign. Your having a tough day/s, but you are tough too! Sending a virtual hug, Emma xxx
Thanks so much for your words Emma. I’m sorry you’ve joined the bugger cancer club too. It bloody sucks. Really best of luck for the 4th Sept – you’ll smash it with that attitude. Big love and keep in touch x
You are doing so well but good to have a moan. I have finished bar tamoxifen at the minute and no we’re near healed or ready for life 100% my anxiety is to much.
I’m glad i’m not the only one! Thanks for your message Nicola xx
Oh this was so enlightening to read. I have been on a very similar journey with you & have just finished my Herceptin injections. Hurrah👍🏻However like yourself family, friends & work are all ‘bored’ with my cancer & now my hair is growing back & I look better than I did expect me to be back to ‘normal’ Wow so far from the truth because as you state, whilst I was having treatment I was fighting to destroy the cancer however when treatment finished I was extremely tired & PTSD definitely set in & I ended up on anxiety & anti depressant tablets as I could NOT stop worrying that it would be back!
Anyway your posts give me a good laugh & I am so glad I am not loosing my marbles on my own(selfishly) glad you feel the same.
Good luck & keep that wonderful sense of honour xx
Errr well you’ve put a smile firmly back on my face after that message. It means loads to know that you’re not alone doesn’t it? Thanks for your kind words. Means heaps xx
You ARE amazing and doing really well, I completely understand the anxiety-I too have it not from cancer but from tearing my carotid artery and having a stroke! Keep strong Helen , I’m thinking of you x
Thanks for your kind message. Hope you’re doing ok too xx
Oh this resonates so much and reflects lots of the thoughts and feelings that come with the cancer you never think will happen to you! Hit me like a train once treatment was done. And I’m left with the worry that although I was her 2 + they caught my cancer at a very early stage through screening so no chemo and therefore no herceptin so nothing to target that nasty protein and live in constant fear it’s gonna come back and bite me!! Anyway I have to stay positive (everyone tells me so) and I did find classes and courses at local Maggies centre very helpful – mainly meeting and making new friends that totally just “get it” no explanation required. Self care is so important so look after you and we’ll done on your campaign x
Thanks so much for your message Andrea. It’s a constant bloody worry and no one understands truly unless they’ve been there. I hate moaning but it’s HARD sometimes!! Hope you’re doing ok xx
Hi …..You are one very special lady . I don’t think you realise how your wonderful words help when you get the dreaded ‘cancer ‘word …..I felt my world was going to fall apart but I had far too much to do in this world so I decided I was going to fight it .
I only had a couple operations, a lumpectomy then they had to go in again because they didn’t get it all …..radiotherapy…..now in remission and taking Letrozole for the next 5 years. So nothing like yours and some of the other ladies but by pure accident I was on twitter and found you …..reading your tweets and blogs gave me such a boost that I needed at the time ….knowing you can go through and what you are still going through and still be so positive . You are such an inspiration.
I am a carer to my son with Schizophrenia for 28yrs and run an art group for all those with mental illness for the last 11 yrs so that is why I had too much to do to give up . When I told my group ( because I had to be honest with them) they were fantastic ….we have just held a Breast Care Tea Party with my art group and the carers group and raised £380 . With all their problems they thought of me .
So my dear lady with your wonderful blogs and everything else you do and my lovely art group you have all kept me going ……Now we here for you and I have told the girls in my group all about you…..Hope this next treatment goes well and we are all thinking about you ……much love Trina XX
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Oh Trina that is such a gorgeous message to read. Thank you. It means so much. It’s such a lonely old game at times so when I hear from others who have gone through something similar then I feel instantly reassured and positive. I cannot begin to imagine what you have to do on a daily basis to care for your dear son. You’re an amazing mum to dedicate yourself like that. And to run an art class too! Yep, cancer picked the wrong one there because you’re def too busy to stop. Mental health is so relevant and so prolific. Keep doing what you’re doing And sending you much love xx
Hello amazing lady …..Thank you for your lovely message but I am doing mu job …..being mum just like you take care much love Trina X.
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Hi Helen….Thank you for your lovely reply to my message ….I will keep fighting like you and all the other amazing ladies. It is just the tiredness that gets to me at times and when it does I think of what you are having to go through so I shake myself up and keep going …..you take care much love Trina XX
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Hi Helen thank you for posting this blog, I really needed to read it yesterday! I am now 18 months on from when I got first diagnosed, and it still feels like only yesterday to me. The hormone blockers that I am now on make me feel hideous…headaches, aching joints and relentless hot flushes. My reconstruction is on the horizon and will be in two parts – with fat grafting first and then my ovaries are being removed at a later date . I’m now back at work part time but exhausted most days. It’s just such a long trek isn’t it, I still feel like I’m on that marathon. I have had amazing support from loved ones but everyone is bored of it now and most of all I am. It’s such a comfort to read this blog because you sum up exactly how I’m feeling. Thank you so much for that! Xx
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Hi Helen could I ask how you found acupuncture for managing hot flushes? I have just started with hypnotherapy no change yet but think I have to stick with it for a while.
Also your hair always looks amazing…could i ask what hair products you use too! Big thanks X
So sorry for my very slow response. Thanks for your message! I found acupuncture to be very effective for my hot flushes. What about you? I use Jamie Stevens styling clay and that’s it! xx
Thanks Helen for letting me know about the styling clay and acupuncture! My hot flushes are still happening, I had an oophorectomy (what a mouthful that name is!) in November so at least I don’t have to have the monthly zoladex implants but still have to take my daily hormone blocker, I’m on aromasin but seeing my oncologist in Feb so going to see if I can change….I need a decent nights sleep and a break from being woken up 3 or more times during the night with a hot flush! I have heard that I can have my hormones measured so want to see if I can get that done and then maybe make a call on whether I need to have the daily blockers. xx