It’s not all fun and games and sometimes my mask slips…..being strong, coping….doing so well Isn’t always possible… That said sometimes you need to let go be raw be honest and say…..I’m struggling……i did this, this weekend.( I’m having a biopsy on the 25th )
*TODAY IM STRUGGLING WITH …………*
There were a lot of things that I’ve shared online and there are a lot of things that I haven’t shared online One of them is about mental health. This is something I have had struggles with for my entire life on and off. BUT post cancer it was very different, people expect that
- you get cancer
- you get treated
- you’re all better
- be happy your alive!!
You should be HAPPY because your alive!! Yep got that but Unfortunately what happens is
- your surrounded by team
- your told where to be and when
- you have a schedule
- you have a support for pain, side effects and treatment
- then NOTHING
You go form this microcosm of being supported in EVERYTHING to being on your own yes you have a follow up or 10 but not immediately and not to the same level of support – it all stops – even the family and friend support dwindles. You feel like a drop in the ocean – the side effects the pain and the emotions don’t stop at the end of treatment. (PTSD is very common also i will talk about this another time)
I can only talk from my standpoint and that is head and neck cancers I don’t have experience of others, but from head and neck cancers we are often left with inability to taste food or maybe the food burns or hurts a mouth, maybe we should / can only have a soft diet, which let’s face it is what babies have and at the end of the day as an adult, to feel included when you have to sit down to eat, baby food wont cut it .
Food is such an integral part of life – and for it to become a negative experience impacts daily living and your enjoyment of life. I certainly feel this – for me food can cause me to choke and risking life for the want of food is one I struggle with mentally – I know the logic is DO NOT EAT (I have a peg) but food is nice – I fancy food like anyone else its like the worlds crappest diet !
Then there’s the physical aspect no matter who you are even if you sort of person who says looks don’t matter – you will still look in the mirror and see the change and how you used to look and seeing that difference, if its weight loss, scars, asymmetry of the face it affects us.
For me personally this is a BIG thing – and it is why I mad my recent video to try and help me move past the discomfort I feel looking at myself on film or even in the mirror. Linked to the physical is the social aspects – socialising mainly consists of *meeting and eating* – so that’s out as well, there’s nothing that will make you as uncomfortable that sitting at a table being the only one not eating.
Speech – without fail – everyone I meet or tell about my story or even family – “your speech is amazing! you speak so well”. Yep, yes, I do – but it’s not normal – or at least my normal . Speaking is hard, i have to think about making the sound – about avoiding these words i cannot say and it is tiring physically and mentally – and only a few people have heard my voice when I’m super tiered and it goes to pot. the sound of my voice is another clincher for me its do deep and gravelly and i often loose it .
The implication is often that I should be happy with what I have, and yes, I am but that doesn’t stop the grief or the frustrations – and those who follow will know that I have had a recent set back with my speech.
All this said I am a happy person I am grateful I am alive – but sometimes it’s not okay – sometimes grief wins out, I feel low and down – I get fed up of all the hospital visits the constant pain and the frustrations.
Right now, my mental state is low – doesn’t stop me being a mum or smiling and chatting at the school gates but its like there’s a dimmer switch and mines turned down currently.
I will pick back up – i will keep finding positives and i will keep smiling as always .