Quote of the day
The grand essentials to happiness in this life are something to do, something to love and something to hope for. – Ikigia – The Japanese Secret to a Long and Happy Life
So today it’s Valentine’s Day. As a couple we’ve never really celebrated. Ste’s doesn’t like to be told he has to comply with certain days (come to think of it he doesn’t like to be told to comply any day), although over the past fear years since being ill I have noticed he has bought flowers on more than one occasion at Valentines, to which I bollocked him for spending too much money on proper ‘florist flowers’.
It’s not that I don’t like flowers I really do however I much prefer supermarket ones or supermarket plants. The brighter colour the better Gerberas, Lilly’s and Orchids are my particular favourites. And I don’t really like receiving them on Valentine’s Day either I like receiving cards or flowers on random occasions just because someone thought you deserved them.
So, for this year I’m just quite happy with a card for me the funnier the better and maybe if an M&S 2 for a tenner is still going then that. Not because it’s Valentine’s Day but because it’s M&S food and let’s be honest I’m not sure what they do with it but it’s like it’s been through some beautiful ritual and it’s pretty damn good (other super market brands are available).
Caring for someone
I have always been Miss Independent but now I’m totally dependent on the support of others Ste, my mum and dad, family, friends, parents of Daisy’s friends who drive her to school and various clubs in the evenings, not to mention the team of ongoing medical professionals. I am totally lucky to have that support. See you don’t have to shower people with expensive gifts to show that you care just being there and supporting them in their time of need is enough. Over the past six months Ste has more than shown me this. Throughout my recent diagnosis he has been my main carer whilst working from home full time, football coaching twice a week and looking after two good but sometimes testing teenagers. It can’t be easy and sometimes leaves me feeling like a burden and subsequently end up doing too much that I shouldn’t be doing.
His work (Bupa) I am pleased to say have been really understanding and supportive throughout this and it was through a consultation letter from them that I was able to get the urgent MRI I needed arranged so quickly with my existing oncologist team which lead to the discovery my Melanoma had returned in the form of three Brain Tumours (thanks Jan the first typo in the last blog was not actually intentional 😊!). A week later I was signing pre-op documents for Neurosurgery to remove the larger one at Royal Preston Hospital scheduled in two weeks’ time.
First time round with my diagnosis and treatment this certainly wasn’t the case. Ste was working in the IT department of a local Refrigeration Company he had not long been there and it’s safe to say when we needed their support it wasn’t there and they dismissed him for spending too much time on his phone. The irony of this is that the reason he was on his phone so much was to the benefit of the company doing testing as they hadn’t issued him with a company mobile. Had his manager bothered to speak to him and ask him this they would have known. Subsequently this was one of the best things that has happened to him though as he now does a job he loves (he’s still an IT nerd) and the people there care about him.
Caring for someone with a Brain Tumour
I’m not sure if this is common for carers of people with Brain Tumours/Brain Injuries but in my opinion (for what that counts) these are the things Ste has had to take on board to help me;
- He is the main contact for all medical appointments as this is something I struggle with
- When I speak on the phone, I have had to have him in the background to help. I have been known to fail basic security questions when having the information in front of me despite him pre-warning the caller of my state.
- Drive us everywhere. I am now no longer able to drive which is something I loved (as is a love of cars thanks to my dad).
- He organises and schedules my pills for me and tells me what time to take them
- Makes me beige food when I have struggled to cook or gets a vegan ready meal
- He has helped me get up the stairs and dressed on several occasions
- Has had to accompany me on walks (he’s certainly not renowned for his walking)
- He has now taken responsibility of the finances which having 20 years plus experience as a Quantity Surveyor/Commercial Lead quite hard to let someone else take control, not to mention that Ste’s previous history of managing money has not exactly been a successful one.
- He arranges my prescriptions
- He communicates with friends on my behalf sometimes
- He tells friends to be quiet and not ask questions when he can see I’m struggling.
- When he sees me turning a pale shade of grey tells me to rest. (brings a whole new meaning to Fifty Shades of Grey)
- Sorts out IT and technical issues at home (I think that’s always been the case though not because I couldn’t more because I couldn’t be arsed)
- Despite me being able to write my blogs I do get him to proof read what’s written and he has to upload it along with any pictures I send him on my blog site along with posting on my Facebook account as he doesn’t have one. (My cognitive thinking has been affected and any more than 2/3 steps in a process can be quite difficult for me at the moment).
- Emotional support when I’ve been low sometimes the medication can alter your mood let alone the physical appearance.
- Arranging someone to sit with me when he’s gone to football training and no-one else has been in the house, just in case I have a seizure.
- Telling the kids to turn the TV down or noises as too many are too much.
- Shouting at me when I’ve done ‘too much’
Learning the Hard Way
Over the past few months, it felt like I was making progress but unfortunately just a couple of weeks ago I learned that going hard (doing too much) can lead to also going to hospital and a stay in A&E for which I am subsequently paying for now, weeks later leaving me so dependent that I asked my Occupational Therapist for mobility aids, shower stool hand rails, noise cancelling head phones all which I will go into more detail in the future. I don’t acclaim to be a profound athlete but for someone who just 12 months ago was boxing training three times a week and going to the gym in the mornings on a regular basis this is the hardest pill of all to swallow.
I do know this is just a temporary blip and that I WILL get better, more independent and hopefully give Ste and those around me some independence/rest in the process. So, for now it’s small steps (literally), relaxing and resting not thinking I can conquer the world as just getting dressed and tying my shoelaces is challenge enough at the moment.
(I know what you’re thinking with I would definitely swipe right for this lady she sounds like a right catch)
What a legend?
By doing all this Ste has shown me the true meaning of what it is to love someone through Sickness and in Health and not just on the one occasion. For that I am eternally grateful and I would return the favour (with the exception of IT support obviously and maybe wiping his arse)
Now before you go nominating Ste for some Hearts of Gold Award I would like to make the following points;
- He gets to proof read my blogs so maybe he could have edited this whilst I’m blissfully unaware.
- Despite all of the aforementioned my combination of smouldering looks, great sense of humour and maybe a touch of sarcasm Ste is clearly punching way above his station.
- He still doesn’t do as many jobs as ‘Super Steve’ across the road as me and my friend like to call him, so clearly needs to crack on and pull his finger out
- I’m the lucky lady that get to listen to his snoring every night!
- He still owes me one.
- Going hard and doing too much can set you back. Learn to relax and rest (which I am pleased to say I am doing that this weekend due to the kindness of a friend in one of my Happy Places with family making more happy memories giving Ste a more than deserved ‘rest’ at home).
- Before you commit the words ‘in sickness and in health’ can you really imagine doing all that and maybe more for your partner.
- Sometimes carers get neglected so friends and family of carers maybe check in on them every now and then. They’re more likely to tell you the truth about stubborn shits like myself. They’re the ones that might need your support more than ever. Don’t do this though if it’s detrimental to your wellbeing or you know you can’t actually follow through with a commitment.