I know that there are people reading my blog who are going through or have been through much harder experiences. Sometimes I feel like I've been making a lot of fuss over nothing, especially since, after the surgery I've gradually realised that this is going a lot better than I expected, and I seem to be recovering quickly.. Of course I know that I'm in a very different place now to where I was just two months ago. There is a lot more certainty now. I'm already used to and embracing the long term effects. This process for me is unfolding more as a psychological journey and the physical effects are proving to be less serious than I was preparing for. My diagnosis and treatment have represented an opportunity for reflection and growth, and by going through each step purposefully, I've opened the door to a lasting positive mental transformation. So no matter what the severity of the challenge you are facing down, make a fuss about it, get stuck in, experience every difficult step and make it count.
The last two days in hospital
Day 4, Thurs 11th February, followed another broken night, I took some sleeping tablets in the early hours which helped me get enough rest. Although I would like to avoid putting more chemicals through my body during my recovery, it is easier to use some help sometimes when it means less pain or more sleep which is what my body needs at the moment. I became quite used to carrying around the two bottles that collected the fluid from the drains stitched into the incision point for my neck dissection. I had to take care where I put or hung the bottles so I didn't drop them or walk off while they were still attached to the bed. By day 4 I only had one drain left, which was the main reason that I couldn't be discharged.
One of the young men I shared a ward with briefly made a lasting impression on me. I had noticed Callum always had someone with him when he was walking in the corridor. One day I walked past Callum's room and saw him pedalling on an exercise bike listening to the Fugees. There wasn't much space on the ward for exercising and with my drains I wasn't allowed out, so the exercise bike drew my attention.. On my way back past I hovered at the door and politely invited myself in. We chatted briefly about the good tunes. A guy in scrubs was sitting in there with Callum, and I realised then that he was being constantly monitored. He asked me what I was "in for" I explained and then asked him the same question. He took his left hand off the bike, drew his loosely clenched fist across his neck and said, "I cut my throat". He told me that smoking a lot of marijuana had led to paranoia. He was a talented football player, but was experiencing immense pressure in his sport, as well as threats and attacks. His intense struggles with his demons led him to believe his only choice was this extreme escape route. Having had some of my own struggles with psychological addiction and its side effects, I empathised strongly with him and understood the precariousness of where he is at the moment. He'd been in since December and was only just off a feeding tube.
Preparing to go home
My ward was always busy. There wasn't much space to move around and there was only one window I could get near to. I couldn't see the sun or get fresh air and I was feeling a bit uncomfortable due to the drugs blocking me up. I'd had a couple of nose bleeds from the air conditioning coupled with blood thinning injections, and I was really looking forward to going home.
On the morning of day 5, my last day in hospital, I was woken to be told I was moving to another room because they needed the space for someone else. That someone else was Rob who'd gone home two days before. I came back to see him later and he was looking in bad shape. He was struggling for breath and his eyelids were so swollen that he could only see out of a tiny gap in his left eyelid. I believe he was suffering with subcutaneous emphysema. He told me he had to go into Taunton hospital last night and they'd transferred him back here first thing. It was really sad to see him back in so soon, and I hope that doesn't become a recurring pattern for him.
On the morning of the day I left, my friend Claire who works in the hospital visited (and brought me a real coffee!) My remaining drain was removed, I got dressed, I packed my bag and managed to eat a breaded haddock fillet for lunch. This was my first proper bit of normal solid food since the previous Sunday. As soon as I had the drain taken out I was allowed off the ward so I went straight out to get another proper coffee. I was buzzing from the fresh air, but the Beast from the East soon chased me back in again. I thought I'd attempt the stairs instead of the lift back up the four floors to ward A609. This was when I started to understand the toll the surgery had taken on my body. I didn't stop but I had to hold the handrail and a few people overtook me, as I puffed and panted my way up.
I felt compelled to go and see Callum again before I left and I took him my remaining Huel drinks and healthy smoothie so he could supplement the dubious hospital food. He was on medication to sedate him. I had a quick spin on his exercise bike as he lay on his bed and we chatted about a few easy things. Before I said goodbye I told him about the blog and I asked if I could mention him. We've exchanged a few messages since and he's upbeat and been making good progress, particularly towards being able to eat again. It will be a long journey but step by step he can build himself up again to be the father I know he wants to be for his little girl Elsie. Good luck bro, keep in touch.
After a slightly bizarre transition through the 'discharge lounge' where the nurse read my list of prescribed drugs loudly for all to hear apart from the laxatives which she read quietly, Jo and the girls picked me up. I was probably more sprightly than they were expecting. My brother was there to welcome me too when I arrived home, and then the exhaustion hit from the eventful day. I found I couldn't cope with much noise or the children's bouncy energy.
I have been out of hospital since Friday and I am settling into my longer term recovery. I've been out walking every day with friends, managing between 1.5 to 3.5 miles each time. I am resting every afternoon and I am trying to listen to what my body needs. My energy levels fluctuate as does the pain, and exhaustion can hit suddenly. I have enough energy every day to spend some time looking after my girls and they're happy to have me home. It's been really tough for them - not seeing their friends, no school, and then Daddy disappearing too. I'm so glad that I can get back into dadding straight away. It would have been even more challenging for us as a family and Jo in particular if I'd not had the strength for everyday family stuff.
I'm managing to eat almost anything again, but it takes me a little longer. I occasionally forget and shovel in a full forkload and then have to stick a finger in or tilt my head around to try and reorganise things. Sometimes food is hard to control in my mouth and after a while it becomes painful to move it around with my tongue. I've bitten my tongue a few times already, as it is numb on the side which was operated on, and sometimes I just revert back to soup or smoothies to have a break. I was really happy to manage some of my own sourdough bread that I baked yesterday..Phew!I was only off it for a week.I do have to cut off the crusts and eat them slowly separately but it's still really good (if I do say so myself).
Today, Tues 16th Feb, 8 days after surgery I'm going out for my first bike ride, it's only going to be a little pootle up the cycle path but I can still feel that the fitness I took into the surgery which is helping me to recover quickly and for my own sense of achievement I want to do a short ride in the first week out of hospital.