Fuck cancer

Having cancer is bad, but watching your beautiful 21 year old baby girl start her own battle is horrendous!! She is such an amazing person and has always inspired me, she being her has given me permission to write my blog, about my experience of her fight, she has asked I be honest, I said be easier if I know she will not read it 🤔 she is worrying about us all, particularly her friends and immediate family. So me being honest about how I am may be hard as trying to be strong for her, although she knows me well, so probably already knows how I am feeling. What I write is how I remember it, how I view it all and from my point of view not hers.

This all started around Christmas- she started experiencing headaches that wouldn’t go away – we explained it away the stress, uni coursework, TCAs still don’t know what that stands for but online exams to you and me or change in diet (veggie due to Sir David Attenborough) but they continued and got worse, a few telephone calls with GP and finally New Years Eve she saw a GP – migraine meds given, this took the edge off them but never got rid. She then became concerned that she was taking too many (this can then make headaches worse – go figure) again spoke to GP a few times over the phone and another face to face, this time urgent 2 week referral to neurologist (don’t worry sure not cancer but 2 week as unable to do other referrals at the moment). So on the 3rd February we had a telephone consultation with a neurologist. By now she had double vision and a numb cheek and top right lip. He wasn’t concerned felt it could be due to over use of migraine meds and wanted to try different medications but felt a CT scan of the brain would be useful (if we had waited for this she still wouldn’t have had it as booked it for 26th Feb!!)

4th February her eye sight was worse, she was worried so rang GP, they said A&E get opthalmology to look at eye. Lucky I was able to stay with her ( we had thought about going to A&E sooner but hesitated, i had rung them and they said i was unlikely to be allowed to stay with her) 12 hours later, CT scan and MRI done, the ENT team talk tumour/mass there is lots of people rushing around, shining lights in her eyes, arguing with the ophthalmologist to come look at her, discussions with QMC Nottingham all a bit of a blur now, but was admitted there and then, I was told I couldn’t visit the ward and she maybe transferred to QMC via blue lights. Leaving her there was at this point the hardest thing ever, yet she was more worried about me! I got the call at 4am to say she was being transferred over to Nottingham neurology ward- no visiting ! Bloody covid !! Then someone on this ward tested positive to covid, so now she was deemed a covid risk – this meant tests paused and other consultants were reluctant to see her. She was moved to EENT (eye, ear, nose and throat) we were then allowed to visit- I would say that once we were told yes okay to visit i knew this was not good, no one had said cancer but we knew. She had a biopsy from up nose, more MRI scans and then last Thursday she was moved to City Hospital Nottingham to Hogarth ward to side room, oncology ward. We were told that it was cancer, and they were waiting for a bed down the corridor on the teenage cancer Trust ward. On Saturday she moved in there, so after 3 hospitals and 4 wards she is finally settled where she needs to be and we have a bed in a cupboard (harry potter style) so one of us is with her all the time, apparently guidelines are different for teenage cancer (which is up to 24 years old)

Her diagnosis is Rhabdomyosarcoma in the sinus (we joke she trumped me on this one, had to go and get herself a rare cancer, but not only a rare one, she has to have it in a rare place too!!) Normally this type of cancer starts in the bones – but no not her, she has it where they can’t operate. The plan is Chemo and Proton radiotherapy.

Her humour is still in tack, its awful seeing her in pain but she doesn’t want to be a nuisance!!! We as parents are taking it in turns to be there, the ward has said we can both visit so have spent a little time together with her, but also need a break to be fit enough to support her. It was the hardest thing ever leaving her last night, as she had just started chemo, but it was Mark’s turn. I want this for her, it should be me not her – life is fucked up and cruel, oddly when I had chemo etc I was pleased the world was still going on around me, now I hate it, I can’t bare Facebook or the news I want it all to stop 😪

12 thoughts on “Fuck cancer

  1. Linda

    Adrienne, I can’t begin to imagine what you’re going through. Ironically it I guess it’s a good thing for Emelia that you have been through chemo yourself. You’ll both know how hard it is but I think having some idea of what to expect might help.
    We are thinking about her and you and Mark and Thomas constantly and if positive vibes work you can be sure they’re coming your way from us.
    Love and hope to you all. A. Linda and U. John xxx

    1. adrienne Post author

      Thank you xx I think her chemo will make mine look like a walk in the park but yes at least its not totally new and yes that makes it easier for me to get my head around xx

  2. Deb Okeeffe

    Oh Adrienne I don’t even know what to say. Beautifully written and raw blog. Your beautiful brave daughter will gain strength from the amazing parents she has in you and Mark. You must all be exhausted physically and mentally right now. To say life is cruel is an understatement for you guys right now but if any family has the strength and resilience to get through this it’s you guys.
    Sending my love as always
    Debs ❤xx

  3. Jo Ray

    Life is just too cruel, unfair and downright crap at times. Emelia obviously has your spirit, the photos you’ve shared show that. You’ve kicked cancer’s arse once already, and now you’re having to do it again. You have so many wonderful friends who love you all, so make sure you use us whenever needed – you’re not alone, we are here to help in anyway we can.
    Love and hugs
    Jo xx

    1. adrienne Post author

      Thank you beautiful friend, I think I may need to use our friends as we are now going to have to isolate- the last thing she needs now is covid – love to you too xx

  4. Katie Everett

    Read this and want you to know you are in our thoughts and prayers X
    You are an amazing strong ,caring lady xx
    You all have amazing friends and family around you ,you are not alone , anything you need ,support ,a good rant and swear anything I’m here XXX ❣️

  5. Sarah

    You are all in my thoughts.
    Sharing your story is very brave and hopefully it will open up lots of doors of support for you all.
    Also sharing is spreading a message of awareness so thank you.
    Sending love 😘
    Get well soon Emilia 💗

    1. adrienne Post author

      Thank you – if helps someone to know what its like and also spread awareness thats fab, my experience of cancer/blog helped a few people . Its hard putting yourself out there but also in the long run helped me x


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