Now You C Me (Part 1)
For those of you who are unaware I was diagnosed with stage 3 bowel cancer 2 years ago. At the time I didn’t go public until I was told I was in remission last year – that’s to say ‘social media public’ – my nearest and dearest were aware, but I’m not really the type who likes to air my business too much (though you will get a few exclusives here), and if I’d have ‘checked in’ every time I was in hospital you’d have been bored within a month!
As you can imagine I have many tales to tell about my “journey” and I’ll touch on everything eventually but today I’d like to talk about one of the many ‘lovely’ side effects I got through having chemotherapy. It’s called Neuropathy, which is nerve damage AND IT’S A BITCH!!
I suppose I only have myself to blame as I chose to have chemo, but when you’re put in a life or death situation you’re gonna hold on to any lifeline on offer, and when it’s the experts telling you, you’re gonna listen. I only wished I’d done more research into it before making the choice because if I had I would never have poisoned my body and looked for a more natural alternative instead of being sold on statistics. Should I ever have to make that decision again it’d be a whole other story!
Don’t get me wrong, I knew it wasn’t going to be easy, but I was determined to fight it to be here for my girls. I knew there was a chance I could get a few side effects on the list so when they started it wasn’t a shock. I had neuropathy in my hands and feet but was told it usually subsides once chemo stops. Usually….
Unfortunately for me it got so bad they had to stop the drip form of chemotherapy for the last month, but after seven months the damage had already been done. Thankfully my hands are ok unless it’s really cold but my feet got it big time!
On the outside I look fine and I’ve always taken good care of my feet so they look ok and you’d be forgiven for thinking I’m all good. I’ve bumped into a few people and they’ve commented on my walk being ‘leisurely’ or how I’m ‘strolling along’, and had to explain that it’s not by choice! I’d give anything to be able to fast walk my ass through Slough high street believe me!
Let me try to describe to you exactly what it feels like in a way you can understand. Imagine that you went shopping all day and dancing all night, then ran the London marathon and danced all around Notting Hill carnival, then walked 500 miles and then you walked 500 hundred more……ok slight exaggeration, but you know when your feet are proper mashed down; throbbing and bunin’ you? – it’s that one there but with the added pleasure of extra super sensitivity! (hear me when I say a bed sheet has bought tears to my eyes!)
It’s chilblains, pins and needles and sunburn rolled into one. My feet are either on fire or frozen with the occasional happy medium of numbness and because of this I’ve had to go up shoe sizes and can only wear flat shoes, the most comfortable being Ugg type boots. Driving is easier than walking but even that’s causing me problems pushing down on the pedals. Oh, and did I forget to mention the fact that it fucks up your balance? So if you see me swaying occasionally I’m not high (👀) I’m just trying not to fall on my face. This is my life, all day, everyday! #IWokeUpLikeThis.
There is no cure but there are pain relief tablets I can take to ease the pain. Erm…no thank you. It’s not even about soldiering it out or playing a martyr, it’s about self preservation and paranoia! I’ve first hand experience of what damage drugs can do to the body; I friggin’ feel it in every step, yet they would have me pop more pills on a daily basis for what? To take a little pressure off and the chance to fuck myself up, get addicted and rely on more drugs to deal with that too? I’ll pass thanks. Yet because I choose to do so my disability is being questioned by the powers that be. It’s like If you don’t want prescription drugs you don’t need any help, naturally!!
I’m not writing this for sympathy, but I am writing it to draw attention to the many invisible disabilities that are out there, because until I got one, I would probably look at someone like me driving into a disabled space and wonder what the deal is.
Not every person is fleecing the system for ‘cushy parking’ or what they can get. I’ve seen the looks and heard the comments about me sitting when I’ve got flat shoes on yet matey’s bunions are trying to bruck out of her stilettos so her need for the seat is greater! I’ve seen the judgey side eyes of old folk and pregnant women and the more blatant ones watching me in my face and assuming shit, even questioning my badge when it’s fully on display, and to you all I’d like to say FUCK YOU!
The struggle is real bitches! I’d love to see some of you handle this shit! It takes a lot to keep smiling and carry on when you’re constantly in pain but I suck it up and think I do a good job at keeping the whinging to a minimum, because really and truly I’d have every right to be a miserable cow! #JustSaying….
But for me, peace, love and positivity is the key……and a few natural herbs!
R.I.P to all that have lost their lives this week.
Beautifully put Dawn. I have many friends with unseen disabilities and know their plight.
But for you hun and take or leave the offer as it does not work for everyone due to mind set. I do do Reiki healing and if you would like I’ll come and do it for you xxxxx
Bless you Charmaine. I had it done by a lovely Macmillan nurse during chemo and it was so relaxing! Might just take you up on the offer! X
No prob just shout xxx
Dawn keeping it real as usual. Know exactly what your saying, as mum went through the chemo, but never knew about the Neuropathy. May be never paid too much attention to that either with all the other suffering she was going through. Thanks for sharing, people really don’t understand. Did you have to be isolated for a period of time after chemo. Mum did and oh boy the hurtfull and negative comments we got from people who failed to understand. Bless you and keep on sharing.
Thanks Elva. Yes I went through the same thing, having to stay away from others for fear of getting ill and messing up the blood count! Some people can be so self absorbed they forget it’s not all about them. Glad your mum had you to support her. Take care and stay blessed. X
Dawn,
I cannot even begin to inagine how much you are suffering or compare your symptoms to mine, but want to suggest something you could try. For years I suffered excruciating nerve damage which affected my neck and right arm. I coukdn’t sit upright without some form of support and apart from the painful pins and needles my arm would regularly go cold accompanied by pain I cannot describe. I had root blocks (again excruciating). I couldn’t work but was declared fit for work by some jumped up government committtee and had to appeal – because I looked ‘fine’ and could walk a few yards slowly. I couldn’t lift or carry anything. I couldn’t write, type or even use a typewriter mouse. Thank God for the partner (now husband) that I have.
I became desperate and spent some years semi comotosed on amitriptyline, gabapentin and a few others. You are right, they poison the body and have side effects. The time when I decided to come off the medicine and put up with the pain. I was scheduled for another excruciating root block which I was dreading.
I had to visit the Dr for something completely unrelated and he noticed my vitamin D was low. He gave me some strong vitamin D capsules (colecalciferol 20,000 unit). I had to take obe capsule a week for 7 weeks. I’m not sure when the pain went but after the course I noticed I wasn’t in excruciating pain every day. Don’t get me wong, I still have to be careful and not do anything silly, but the difference is remarkable! I cancelled my nerve root block.
Check your Vitamin D levels. I now take over the counter top ups. Also, google Vitamin D and nerve pain. Here is one of many articles http://www.cam.ac.uk/research/news/vitamin-d-could-repair-nerve-damage-in-multiple-sclerosis-study-suggests.
I wish you all the best going forward and hope you can find a solution to your crippling nerve pain.
Wow!! Seems like you had a rough time of it! I will definitely look into that as I’ve had to take vitamin D tablets before so you could be on to something. I’m willing to try anything natural but steering well clear of whatever pharmaceutical meds I can. I’m currently in the same position you were in trying to prove my disability is what it is which is laughable when you consider the amount of money they can spend on war and destruction but you have to fight a war with them to get them to help you!
I hope you’re doing well now. Stay blessed. X
Sorry about all the typos – I did it on my phone and I couldn’t get back in to edit it.
Admiring the time and effort you put into your blog and detailed information you offer!..
Thankh you.