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 😪