I can’t feel my face when I’m with you

4 minute read time.

So yeah, the last words were a total jinx. I couldn’t have tempted fate more if I had tried. On the 25th June my ‘journey’ took a very different path to one I could have never imagined.

I attended my oncology appointment as planned and the CT results were a good surprise! I had reduction in the size of tumours in my liver and chest bone and stable everywhere else. This is one of the best outcomes I’ve had. Because of this, chemo would go ahead and another scan would be planned for 6 weeks time again to check progress. The day after my chemo I woke up to the worst pain in my upper back. I had had my Denosumab injection with the chemo for my bones so took pain killers and cracked on with the day putting it down to the drugs. It was my Mam’s birthday so me and my sister had a packed day with lunch and  a party night out with friends. That evening was when shit well and truly hit a massive fan.

I was already to go on Saturday night with a gin in my hand with a friend waiting for a taxi when my foot went numb. I went to move my leg to ‘walk it off’ as you do when I wasn’t able to move my foot. I got my friend to help me to my feet and my legs gave way from beneath me. Swiftly followed by the ability to keep any strength in my arms. Within 7 minutes I was on the front room floor unable to move from the neck down. FUCK. Thank all the God’s above that my friend was with me. She was on the phone to 999 in a shot a knowing all of my details and had an ambulance on it’s way. (FYI for this priority emergency the ETA was 90 mins which scared the living crap out of me. It was there within 45).

At A&E over Saturday night and Sunday I had X-Rays, CT scans and MRI scans which in conclusion showed that I my pesky cancer had spread to my spine causing damage in my T4/T5 thoracic nerve. Then the big conversation. What was to be done? Right now I had zero feeling from my armpit down and that’s how it had remained since I arrived in A&E but the doctor had a few options. The first was on this Sunday afternoon to complete a referral request to the spinal unit to operate asap and release the pressure on the nerve. The second would then to look at radiotherapy to blast any remaining cancer so it wouldn’t come back and do the same thing. After two hours the results were in. Request denied. They just said no. They can’t help. There would be no operation. They had reviewed my scans and come to the decision that the nerve was too damaged and starved of blood for too long that I would not regain any feeling if they completed the surgery or the radiotherapy. Lying on my back on a bed in A&E I said with a half joke ‘this is it then for the rest of my life’ and the answer was simply ‘Yes’. No beating around the bush or a glimmer of hope was to be had from the medical team. They were not messing about with the delivery and that was too much for me to take in. I was transferred to a ward that afternoon while we decided what the hell would happen to me now. The Radiotherapy team came back on Sunday night and said that they would complete a session of Radiotherapy for me if I wanted to the next day. With absolutely nothing to lose I said why not. It was a painless 15min procedure that couldn’t do any harm so was completed on Monday afternoon. Now we wait.

Last Tuesday I was visited by every part of every medical team to decide next steps and courses of action. Not only was I classed as having a major spinal injury, I also have cancer to treat which splits all of this in two. That conundrum wasn’t one I had to contend with for long. The decision was made that my cancer treatment wasn’t working fast enough to keep up with keeping me as a functioning adult so was no longer going to continue. Let that sink in. For the last 14 months it has all been a rush and race to get chemotherapy drugs in me consistently so I could be kept alive and now they are taking them away and no one can tell me what the hell that looks like. Again, we just wait. Because of this situation, it was agreed the best place to move me would be to a Palliative Care Unit. Here they could manage my spinal injury and help me get about whilst managing my pain and the effects the cancer will have now I’m not on active treatment. Having to think about moving to a place where I could possibly spend the rest of my life and never seeing my own home again was enough to blow anyones brains out. But here I am at 36 years old, 2 weeks after being paralysed and 10 days on the Palliative Care Unit asking myself what the fuck just happened.

So I started a good book. 

Anonymous
  • Jeez honey, your story really hurts. How are things today? I cant offer anymore than to say hi and chat. I wish i could...xxxx

  • Holy shit, what a complete and utter nightmare. This post silenced me. We started treatment about the same time, you were a few weeks in front, and both you and your blog have been awesome. A total inspiration and useful tips, helping us all along. Telling it how it is but letting your great personality shine. This is awful news. I know your family and friends in the real world will be rallying to you, but we are here for you as well. You are aren't shouting into the void, we hear you. Whatever is happening continue on your terms and if you don't know what those terms are, why would you, its a hideous shock, take the time you need and the only person whose needs matter is you. You are awesome and valuable, so don't lose sight of those facts.  If I was closer I'd bring you a big drink, as it is I'm sending you a big hug and lots of love. Xxx

  • On the good book front, get Amazon prime on the go. Millions of books. Aim high! 

  • Jeez, I can't imagine what's going through your head right now. It's shocking news and everything happened so quickly!, I'm really so so sorry at the turn things have taken for you. I can only hope and pray that the powers that be can, and will, try something, anything, to make your symptoms liveable with and get you some mobility. You must be in turmoil and I'm so in awe that you're even able to communicate what's going on. Much love and thinking of you x

  • wow. it sounds horrific for you.  I had throat cancer and had my larynx out. I lost my voice but it's not half as bad as what you are going through. I wish you all the best and please let me know how you're getting on.  I didn't get your name but please don't push family and friends away you need them more now so don't go through it on your own. please keep in touch. x