King of the Castle

Dalhousie Castle

Caz and I set off to Edinburgh on Wednesday, taking advantage of a deal and staying at the plush Dalhousie Castle. We had Kali with us and the place wasn't busy, so the cheap deal had us in the Lodge, separate from the main castle. As it wasn't busy they had moved us into one of their themed rooms (four poster bed - the lot), but as we had the dog, we got a basement room instead. We took advantage of the spa for 50 minutes, which degenerated into a water fight between Caz and myself! We still nipped round to see Rob, Steph, Abbie and Sam though!

Dr Andrew Bathgate saw me in Clinic and has just phoned me on my return. There is still concern about my potassium levels which are high at 7.9 and the creatinine levels are still at 200! They have told me to reduce the Tacrolimus and increase the MMF to try and solve the issue. The kidney issue is caused by the Tacrolimus. My hand has tremors and right now i am very salty in the mouth. It leaves me feeling that I have no energy and giddy at times. There will be several blood tests next week to measure the progress.

On my next visit, which should see the medication greatly reduced, I will meet Professor Forbes and discuss my involvement in a trial. Once i have digested the information I'll discuss it in a later post. I also had an ultrasound scan which seemed to go well.

It was a good clinic and I bumped into James who had been in for the weeks assessment with me. He's 4.5 weeks post transplant and looking very well. It was great to see him in this state as when i was in with him, he was struggling with it all.

I asked about the size of the tumor at the time of the removal of the liver. I was told that there were in fact THREE tumors which if that had been known would have discounted me from Transplant immediately. The sizes of theses tumors were 3.7cm, 20mm and 5mm. There was no intrusion into arteries or veins, meaning that there is virtually no fear that the cancer spread.

Monday I went up and took the Filipino Martial Arts class. I really enjoyed it but Tuesday i was tired. I made it back to the gym to work on the roller door that has broken but was exhausted at night.

World cup starts tomorrow. I'll enjoy that. I'll support England but the African teams will no doubt excite. Argentina should be great to watch depending on the Maradonna factor - genius or madman - but the favourite, Spain, I don't think will win it. Watch out for the dark horses Holland and Brazil. It is going to be a good one I think!

Mother Theresa once said: "Do not wait for leaders; do it alone, person to person."

“See you on the other side!”

Faced with driving myself down I took the route over the Cairn o’Mount which slowed me down and made an anxious journey a pleasant one. It was a swift but relaxed drive that saw me arrive at the Edinburgh RI Transplant Unit at 12.30. At the same time Caz had been up in Nairn with some of her pals on a spa weekend and had just made it back too the house where Kali was returning from a walk with a near friend.

I went upto Ward 206 and was met by the surgeon and the main Transplant team. Signing consent forms, I was informed the liver was in good condition. I changed into the gown and gave Caz the final call, saying “See you on the other side!”.

I was wheeled into the anaesthetic section and I don't recall anything else after that. According to report, I had an 8 hour operation that went without anything special happening. I was recovered but left in a sedated state until Wednesday morning. In the meantime Caz had made here way down and collected my stuff and simply had to hang around and stress.
I awoke on the Wednesday morning to the sound of a near patient shouting. If you read the Nov 08 operation you’d see the significance of this as it was a similar situation. I remained in ICU till that evening before moving into the HDU.

The HDU was quieter and you had a dedicated nurse. I was walked, washed, given dialysis, fed and given the concoction of drugs to make sure the Liver was not rejected. Dialysis was required to kick start the kidneys which had closed down in shock.

This was particularly harrowing as i was hallucinating heavily both visually and aurally. There was a picture by Van Gogh that was very much in my focus and caused some distress. I had an oxygen feed to my nose and this ran past my ear lobe causing a ‘rushing’ sound that led me to believe i was listening to he radio or music when i attached myself to a note!

On the Saturday evening i was moved up to the ward, a room shared by 4 of us. Whilst this gave me an outlet to communicate more, it was a very strange and hostile change. The first night I heavily hallucinated neon lizards climbing around the walls whilst I made a reality from the noises i heard, creating a madness that lasted all night. This happened for three nights and I was comforted only by talking to others who also said that they hallucinated because of the drugs.

I had no energy, trying too get up was nearly impossible and my thighs burnt as if after a long cycle sprint, simply from standing up. I needed to get more O2 into my body and they gave me The Bird which was featured on the previous video. This soon got my lungs working and I started to build energy in a very limited supply.

I knew if I wanted to get home that I had to start ticking the boxes, and since home means self medication I took control of my medication quickly. Not a hard task for me as I had self medicated for over a year on Cancer treatment.

Sleep was scarce as the nature of the hospital is that of a busy place. I rested when i could, exercised by walking around the wards, ate well and drank loads of fluid essential for the kidneys to operate.

I had a few visitors which helped break the monotony and Im eternally grateful to Caz for being there as well as the support to her from Rob, Steph and Julie. Visits from Perry, Wendy, Angie, Henry and even Justin who was over from NZ. As i was emotionally exhausted i kept away from the phone and the internet.

Two weeks after this major operation I was allowed home, well in advance of some who’d had their transplant a week before me. Coming home was a test in its own right and I went into a sort of shock but with the restful sleeps I could now have I have over come. After two years of fighting cancer and several more on top of that of poor health, I’m exhausted and relishing recovery time.

Today, Caz drove us down to Edinburgh for the weekly clinic I will attend for quite a while. They have taken blood in order to see if i need to adjust the medication but are in general very positive about my progress. There will be no doubt trials I’ll yet have to face and I haven’t even touched the emotional side of what has happened yet, so this episode is far from over. I do remind myself every now and then that I have beaten Cancer where many expected me to give up or be another statistic.

Instead the Cancer specialists are arguing over the liver as it could hold the key to getting Sorafenib more readily available on the NHS. I may be the first in the UK, definitely in Scotland to have responded in Liver Cancer with this medication, but as readers of this blog I am sure you’ll agree its more than just the drug, Its the whole attitude!

On the list

They said I could give up at any time, that I wouldn't beat the machine, but they ended up turning the machine off

Well that's me on the list, it was confirmed about 4pm on Friday but I'd felt I'd won it earlier on. I had to do a fitness test on the friday morning on the bicycle, linked up to a computer. The Dr overseeing the testing said at one point that I should give up when I felt ready, and a couple of minutes laughed that I wouldn't beat the machine. He turned it off two minutes later.
Then I had a meet with the surgeon. He was very much disengaged from personality but in the end he was chatting with me freely. I knew then I had his vote. Their major concern is me jumping back into physical training too quickly. I dealt with that.

There was a consideration that as i have a ticking time bomb in my body that they would simply take the first liver regardless of condition, even one they would normally refuse but after a call to BUPA, it was confirmed that my Sorafenib medication would be extended for 6 months. This allows them to make sure i don't get a liver with a tumour in it or with any other disease.

I saw two people during my stay who have both had transplants so I learnt a lot from them, one of which had returned to competitive contact sport withing 18 months. They say it takes a year to really recover and I am not allowed to travel abroad before then.

So thats it! I cant go further than an hour from my house and the tendency is that the phone call will come after 8pm. An ambulance will be dispatched and about 6am I will be operated on, an 8 hour operation. There is the chance that I will wake up and it has not happened as the liver was refused as being poor quality. I'll have to deal with that when it happens.

"Don't be too timid and squeamish about your actions. All life is an experiment. The more
experiments you make, the better."