I have just walked out of my physio appointment, with one of the loveliest women I know. I honestly don’t know how I’d continue to function on a day to day basis without her and the other lifesavers the practice have. I have been counting down the hours since late last week until I could come and know she’d relieve things.
I’ve decided to just bite the bullet and write a post. As usual I’ve meaning to....well....forever (same old same old!) to update on all the positive things (and boy there are so many!) that have been happening but hey I haven’t. I have just reminded myself that one of the reasons I started this blog (aside from helping others which is at the heart of everything I do) is for ME. I find it cathartic, to offload all the thoughts I have swirling around in my head.
On that note I asked for a referral at Late Effects Clinic to Psychology in November. Still waiting....as with most services they are completely overloaded. I have no doubt I am experiencing PTSD in some form but thankfully I’m still able to recognise that and want to address it. Really who wouldn’t be given what I’ve faced over the last 28 years.
I was just thinking about the ‘Facebook Lie’. It is and it isn’t. I tend to post about all the fun, positive things we’re doing and we’re LUCKY to do or is it that we make the most of opportunities? Probably? I decided this summer we’d use the unexpected small pay out from the Motor Insurers Bureau (I only wanted to keep my no claims!) from an uninsured drug dealer smashing the front off my car in January 2018 to do as many fab things as we can. I have yet again stared immortality square in the face and not being morbid, just realistic, none of us know how long we’ve got on this mortal coil eh?
That money could be swallowed up into our families expenses in an instant but we were presented with opportunities to visit friends abroad, meet family in Europe and London and host them all Chez Gilbert and boy are we going to enjoy it and make the most of it. Hey and the ‘advantage’ of a zero hours contract cannot be sniffed at! Having the summer to hardly stress about childcare?! #alwaysfindthepositive
Today my cheerful and positive outlook is a little weary and dented. I’m not looking for sympathy just understanding and awareness. Offloading here (and not to a husband who understandably is also weary of the continued challenges we face) is therapeutic for me. Also maybe this will help people see I’m really not Wonderwoman personified, I have many of the same daily challenges as us all. Puking pets, household appliances breaking down, wondering and worrying about work. The reality is living with long term side effects of disability and cancer treatment (that which was required and that which wasn’t) can be draining.
Reflecting on it, no week and still often a day doesn’t go by without one appointment or other for me or one the children. Ordering medications and sorting out everyones health challenges. On the whole it’s nothing major but it takes carefully organised logistics. Last week in Bulgaria I spent over an hour on the phone to Leeds Teaching Hospitals sorting various things out. In the end the lovely lady said she felt so bad and it must be so overwhelming that even though one of the issues needed to be dealt with by another department she was going to walk down there herself and sort it. Mostly I accept all this is ‘just life’ but on occasion I honestly feel like ‘I can’t be arsed’.
My body struggles due to the imbalances and overuse caused by the problems with the leg, hence constantly fire fighting with physio and exercises the hip, knee, ankle, elbow, shoulder and back problems on the left side in particular. Again not all are serious or difficult to 'fix' (some are) but it's WEARING. It stops me swimming and doing pilates, which conversely keep me sane and hopefully contribute to keeping the cancer at bay.
I absolutely HATE the rhetoric used to refer to cancer....the battling and fighting and ‘staying strong’ but hey I admit sometimes it really does feel like an uphill struggle. I want to put my energies into my family and friends, fundraising and helping those affected in similar ways but sometimes the energy ebbs away.
I certainly won’t go into the gory details here but tomorrow it’s off to another emergency gynaecology appointment. Safe to say the after effects of going through 2 chemically induced
menopause and dealing with now being peri menopausal again are physically and mentally challenging!! Carrying a small towel or flannel everywhere is necessary once again. I really do feel a sense of unfairness facing going through the whole shebang a third time. But what can you do? Have a moan...oh yes I do that sometimes too.....then just get on with it. People say ‘I don’t know how you do it’ or ‘I couldn’t do it’ but you could, you would, you literally have no choice.
Sick to death of all the scaremongering - flying too much, drinking orange juice, being overweight blah blah gives you cancer. And some get it when they don’t drink or smoke and are slim and exercise loads. Snorting puréed kale standing on your head may ‘cure’ you but if anyone else mentions cannabis oil to me I might just scream. Do people not think if there was a mass treatment that was easy to get hold of and would ‘cure’ or save most people we’d know about it? They’d be using it? They WOULD NOT be giving some of the same chemo drugs they did 28 years ago if it was that simple. I’ll not go off on a rant nor am
I opening a big debate about it. Other than saying a young Mum diagnosed at the same time with the same breast cancer as me died recently as she was so convinced alternative treatments could save her. Unless you personally, not your Nan or Uncle or breast friend, have been there or stared these decisions in the face you simply can’t say what you’d do.
Survivor guilt is a tricky one too. Ive lost too many similar aged friends in the last few months to this harrowing disease. Shouldn’t I be making the most of every minute and ALWAYS being thankful? Well, you can’t, things get me down like they do everyone else.
Anyway, after this offload and appreciating this cuppa I can face the rest of the day :)
