Posted on October 29, 2015
I’m SO sick of crapping about all things medical, but hey, sometimes that’s all I have!
So, the shoulder pain did turn out to be something. By the last week it had moved into my neck only, and I was telling my oncologist last Wednesday that it was getting better, I felt like I was improving. However, I woke up Friday morning and I was in agony. I was so sick of the pain, I couldn’t move my neck, or even my eyes within my head without getting an agonising pain through my head. I took all my prescribed meds, plus some panadeine forte that Gaz had left over from a dental procedure. I just wanted to bomb myself out and sleep through it. I woke up when Gaz got home, and I said I couldn’t stand it, I was literally holding my head in hands and nearly screaming, I literally had to stifle it. And then, I worked out what it was. In hospital last week, they had looked for blood clots in my chest, which is perfectly reasonable, as at that time I had shoulder pain. I said to Gaz, they didn’t look at my neck, I’ve got a clot in my neck.
So, down the hospital we went, where I told them what I had lol. They got me into “fast track” pretty quickly (I was very suspicious that I was not going to be a fast track patient, but what can ya do?) To be honest my treatment in there was appalling, they barely gave me any pain relief and I was in 9/10 pain. I had to keep asking for it, and put up with being looked at like I was a junkie looking for a hit. They moved me to “short stay” when they finally decided to “humour me” (that was very much the impression that I got) and do an ultrasound of my neck. It had to be done in the morning, as they had no techs on overnight.
The night that followed was horrific. I was in breathtaking pain, and I kept on asking them why they weren’t doing anything to get me out of pain. I was offered panadol, nurofen, panadeine forte finally, like even panadeine forte was a big concession. After a lot of complaining, they finally agreed to 2.5mg of iv morphine every TWO HOURS. The guy the previous week was desperate to get me out of pain at least, and he was giving me 5mg every few minutes until we reached a controlled level. The level of morphine was absolutely useless, and finally in the middle of the night I rang the bell to get a nurse, and I was BAWLING. I hardly ever cry, especially not from pain, but I was actually crying in pain, and rage. I explained to them that after a year of being in the palliative care program, I had only recently conceded that it was stupid for me to be in pain, and to call them when I needed any type of pain control at all and they would deliver it, or tweak my daily medication. It took me so long to stop seeing it as a weakness, to stop seeing it as the beginning of the end. So, I said to them, here I was, in a HOSPITAL, and they were leaving me writhing in agony and begging for pain relief. The woman talked to me as though I were a child, which made matters worse, I was getting REALLY angry at this point. I mentioned that I might be better to go home and ring palliative care….they inject me with 20mg of morphine, and generally leave me with a butterfly in my stomach and another 20mg drawn up so I can give it to myself if needed. That just sounded a lot better than the 2.5mg on offer two hourly where I was. At that point, she put it up a bit, I think I could have 2.5mg every hour instead, but of course, it did nothing, and I continued on in agony for hours and hours and hours. Took this pic during middle of the night misery.
Finally, way into the afternoon, I got collected for an ultrasound. As soon as the guy put the thing on my neck he said “oh, you have a very large blood clot here”. No shit. Could have told them that. Did, in fact.
They admitted me to the oncology ward, due to the proximity of the clot to my brain and it was on the pathway. Things improved massively up there, they really know how to deal with people in pain. Initially they took me to a four bed ward with three very elderly men being the other patients. I said I never make a fuss, but emotionally, I just couldn’t do it, not on top of what I had been through. They were brilliant, they popped me in the family room and within an hour, they had a private room for me. If anyone needed a private room and a lot of tea and sympathy at that point, it was me.
Once I had heaps of painkillers on board (endone, oxycontin, morphine injections for breakthrough pain), and I could mildly stand to be touched, I laid down and Indi asked if she could get in with me. We often cuddle up in mums bed and it’s special time for both of us, so I said yes, she could. Within a few minutes we were both like this:
Gosh I can see the pain in my face. But also a peace, because I was with my girl.
They controlled the pain pretty well for the rest of the weekend, but nothing was really helping me to move my neck, I still couldn’t really bear to move it at all. Finally, on Monday, the oncologist came in and said that the pain was nerve pain, as the clot was pushing against one, hence the shooting pains in my head. He said he was going to add this Lyrica drug, and by the end of that day I was moving my neck. Miracle drug, for me.
As I was leaving the hospital on Tuesday with lots of pain relief and clexane injections for the next 6 months, I mentioned that Thursday was our annual trip to Mitta Mitta, and I suppose we couldn’t go now. He said I absolutely could, take the pain relief, take the injections, enjoy your holiday and we will work on the plan next week (as I missed chemo on Tuesday as there is no way to administer it, my port is blocked by the clot).
So, we are just about to pack the bus and leave, we will drive half of it tonight and the rest of the way tomorrow. This trip brings about many emotions. I remember last year, I was only a few weeks out from the planned date for the liver resection…this was before we knew my liver had any troubles growing. I posted a picture on Facebook, and said in the caption, something like “bye Mitta, see you next year”. And then I thought about where I might really be this November, only a month shy of the maximum length of time I was given to live. I could be cured by the liver resection, but if I wasn’t, I actually expected to be dead, or close to it.
So, it’s a funny position I am in this year. The liver resection never happened, and of course, I am palliative, but I am NOT dead. Besides pain from blood clot, which is easing daily, I am feeling very well, and certainly not in any sort of decline. There is no road map for this, no guide book for living longer than you expected. It feels like a triumph that I am still here, and I am going to enjoy every moment of this four days with my family. I have packed 3 books, four magazines, and the whole second season of Broadchurch. I think I am being a bit ambitious, but hey, it’s worth a try.
Hope you are all doing something relaxing this weekend. With much love and hope. Always, always hope
They are worth fighting for, and I will. As much as I can, for as long as I can