Having a break from video blogging or vlogging or whatever this time and not 100% sure how to start this. I’m still here, still alive – barely. Currently sat in a side room in St. Leonards Hospice with a great view out over a field.
This last few weeks I’ve been through so much, mentally and physically. After leaving the hospice last time we went through a process of slowly trying to reduce or change drugs so my pain would still be managed but with less side effects. In short, this backfired and I ended up just having more and more pain, calling out district nurses multiple times throughout the day for a top up of drugs to try get back on top of it.
The pain at this point was pretty intense and constant. I really didn’t want to be back in the hospital after last time so it took some persuading this time with a promise of a hospice bed as soon as one came available. Based on that promise, I headed in and had an epidural fitted that night – yep the same thing pregnant women have. This would pump drugs continuously into my lower spine bypassing the gut and everything making for much more effective pain relief. Not the most pleasant experience to have put in but then you could probably say that about any surgical procedure you’re awake for!
I had to sit on the edge of the table, feet on a stool raised up in front of me and arms & shoulders slumped down in front of me, and of course I had to sit perfectly still in this position while they worked their magic. It wasn’t painful beyond the initial small injection of local, I could feel pressure etc but no pain. Good news was it seemed to work, I was pain free for the first time in ages!
Unfortunately though this was only a temporary measure, what they really wanted to do was to fit an intrathecal pump which was due 6 days later and I had to stay in hospital in the mean time as leaving with an epidural had to many risks of either infection or the tube being moved. As it happens, it did move on day 5, and completely stopped being effective – I was in agony that day. Nothing at all would touch the pain which had come on again so suddenly and I would definitely mark that night as the worst since my twisted bowel pain years ago. They could have possibly re-inserted another but opted not to with the main one being the next day they didn’t want to risk anything delaying that – so I was stuck being fed painkiller constantly through the night and following day.
The Intrathecal Pump
The Intrathecal Pump is a small machine about the size of an old walkman if you remember those. I carry it round with me just as with the syringe driver but with this one, the tube leaves the machine, goes into me in my shoulder and is fed down the side of my spine. Once at the lower spine it goes directly into the spinal fluid. It’s a bit more of a major operation.
I finally went down about 2:30pm being told it would take around an hour and a half to be back on the ward, not bad going. For this one I was to be knocked out, and all the people involved took their turn to introduce themselves and really made me feel at ease. I don’t know what happened, if something went wrong or was some complication, but it was around 7.30pm when I got back to the ward – a full 5 hours down in surgery! I was pretty much out of it for the night then, but by morning pain free once again!
Unfortunately this is again short lived, the IT pump was taking care of the old pain in my back and stomach – but I had a new one. Shooting down my left leg from the top down to the calf, persistent and not eased by any drug. They believe it might be pressure on a nerve or something, something that’s been caused either by the epidural falling out or the IT being put in… and I might be stuck with it! The only thing that eases it slightly is heat and that’s with having a heat pad on for a good hour or so. It makes it very difficult to walk far and is just bad enough to keep me up in the early hours. Not pleasant at all right now.
As I type this up ( over a few days lol ) they have now managed to increase my dose enough to get rid of the shooting pain but it comes at a price of having numb legs for half hour or so after hitting the button for a topup. A small price to pay.
This last day or so my legs have swollen also, from my ankles right upto the top of my thigh again making it difficult to walk more than a few feet without having to stop and rest. The Dr said this maybe a permanent condition as the tablets for it weren’t working… yet another blow!
Trial at home
I decided to head home for the night last night and see how I managed, All in all it wasn’t to bad. I struggled with the bathroom a lot, with my swollen legs making it difficult to move far and no supports to hang onto in the bathroom. Mobility is definitely becoming a huge issue for me now – I can just about hobble to the bathroom and back but much further than that I’m finding I have to stop and rest. It’s mainly my left leg which has always been the weaker of the two anyway.
I get a lot of feedback and comments along the lines of “I’m the strongest person they know” or “I’m in awe of you” etc etc. Honestly, I don’t feel like that in the slightest. Staying strong right now is really, really fucking difficult.
I’m slowly but surely losing control of my body, losing my independence and dignity, losing what it is to even be human. It’s getting harder each day and if it wasn’t for Karina and Freya keeping me smiling I don’t know where I would be right now.
The fact is I’m dying, that’s the short truth of it and nothing is going to change that. It’s happening and it’s probably coming sooner than I would like. I’d be lying if I said I wasn’t scared right now. The Dr’s can’t give me any kind of time scale as I’m kind of in the middle, in between the “at least a year” and “a couple of weeks” that they tend to say.
I can barely do anything of the things I used to love doing, and am so reliant now on Karina for everything large and small which she does without hesitation. I cannot thank her enough for what she does for me now.
So how do I stay strong through all that? Karina and Freya. They keep me going, give me a reason to carry on as long as I can.
Everything else now comes second to them.