cancer, dehydrated, dehydration, disabled mummy, exhausted, fighting, friends, head and neck cancer, hemiglossectomy, hospital, hypothyroid, infection, late effects of head and neck cancers, lonely, mouth cancer, MRSA, PEG feeding., Radiotherapy, side effects of radiotherapy, surgery, suvivor, terminal, tongue cancer, treatment, Whats radiotherapy like
I became a patient, a statistic, a member of a club you NEVER ask to join yet can NEVER leave.
I’ve spoken of my depression and anxiety before, but I’ve never found a way to put it in to words.
I’ll try, once you’re in the club you’re playing Russian roulette with Schrödinger’s cancer, it’s always there, even when it’s not, it is.
My 2 year cancerversary has been playing on my mind, especially as I’ve recently been struggling with infections (9 weeks so far!!), hand in hand with this I’ve felt generally unwell, generally exhausted. Oh and joy of joys my nausea is kicking my arse again, I can’t even make it out of the village without feeling travel sick, and G is now an expert at finding places to stop so I can puke. The knock on from this is struggling with feeds. It feels like a vicious circle.
This is a very lonely journey, terribly so. I no longer have friends, no one says fancy a cuppa? Or are you in, I want a chat…I even have a volunteer friend, yep someone comes to see me once a week, because I’m so lonely I need a reason to get showered and dressed. Now this is no slight on anyone and of course there are exemptions that prove the rule. But I try really hard to not seem desperate while always saying *be my fwend, come play wiv me..* but I say ‘I’m always in, just pop in, come say hi, I’ll teach you to sew, I’ll make that for you etc’. I always try to ask how people are and offer help and or advice. I set up a support group for military spouses with disabilities and or additional needs to try to fill this gap. But through my awkward paranoid anxious mind I don’t often post in there, because I don’t want my issue to trivialize something else if going through or that people will think it’s *Steph’s moaning again group*.
I try all these things to make friends or to socialise/converse with people. I think I’m the one of those people, that others will say ‘oh yeah I know her’ but that’s as far as it will go. Perhaps it’s always that way for me, I have had friends who I’ve been close to, but it’s never lasted that long.
Anyways, back to where I was going with this; it’s a lonely journey that only members of the club understand, they understand the pain – it really bloody hurts – they understand struggling with nutrition, fighting dehydration daily and the FEAR (that word is nowhere near adequate). They understand that if you’re on 6 weekly check ups that, week one is fabulous, two is still good, week three is rocky and it gets worse from then until week six when you feel anxious and back to square one, and repeat.
One person who truly got this is an online friend, now we aren’t close close but we ‘get it’ we chatted online loads about the pain the struggles, solutions we have found. She’s a wonderful woman. We shared our original diagnosis and we’re progressing similarly. Until I saw this…
On reading this I was overcome, I struggled to breath and started choking! As soon as I got my breath I messaged Em, I can’t recall what I said and I don’t really want look back. It was her hubby who replied, She’s already sick, really sick.
This broke my heart but it also has filled me with a fear and sorrow that I’ve never experienced. I cried for days and days. It just makes no sense to me, she’s such an amazing woman.
There’s a link on my Facebook page set up by a friend of theirs to raise some money for the family, for now and for afterwards. Please, if you can afford to, donate some money. It’s not a lot, but could really help.
My husband is taking part in ‘the suffering race’ an endurance obstacle race and will be seeking sponsorship which will be paid straight into Em’s go fund me account.
On top of this most terrible news, my husbands auntie died, a sweet old lady who made D the most beautiful and delicate receiving blanket, and handmade Christmas cards, her funeral is today. Then we heard that G’s estranged father has cancer that may be terminal.
So all in all it has been pretty shitty recently.
Saying that the children are well, D is 4 next month and I am 2 years post cancer diagnosis and still here!!!
I was picturing this being a memorable post but I’ve not achieved that. But I’ve written what I wanted to and feel better for writing it.
Sending love to those who need it and signing off.
Trying to smile.
I hope that by writing this blog I can help others in similar situations take comfort in the fact that they are not alone. Please help me reach more people with my blog by sharing my posts on Twitter and Facebook. If you would like to follow my story, please sign up to the mailing list so that you can be notified as my blog is updated. Should you wish to get in touch please feel free to use the ‘Contact Me’ page to fill in your details and I will respond to you as soon I am able. Thank you, Stephanie x