Monday 29th August 2016

Hi again all, what a fabulous day its today, sunshine, no wind, warm. Well we did go to the Great Dorset Steam fair yesterday, but the weather wasn’t quite so good to start with, heavy drizzle and overcast, however, that cleared quite quickly and we had a lovely, but long day day.

It was the first time that we had been for quite a while, and it was certainly smaller than it used to be, or it felt it. The steamers were still there in large numbers but things like the market area had reduced in size and quality!! 😀 As I have a lack of energy these days, everyone from the doctors to Sam and Laura tell me that I need to use my energy where I need it, so the girls hired me a 4 wheel drive buggy for the day, WOW that was fun!!!!! It is only when you are in a wheel chair that you realise how rude people are to the disabled, you somehow become ……….. invisible 😀😀.  A lot of people just stand in the way, or say “sorry, I didn’t see you”, many not even saying sorry!!!!! Anyway, my challenge for the day was to see how many of these rude people I could interact with 😀, I tried to be polite, saying “excuse me” but somehow they became deaf, others needed a little push!!!!!

Anyway, we had a really good day despite that, driving the buggy really was fun and it made life so much easier to get around for all of us. the day passed really quickly, it was nice to see all the showman engines, the working traction engines and all the old vehicles, far too much to see in a day. We had to have the buggy back for 5pm, and that time came around all too quickly, we took it back and then we pondered on what to do to finish the day. There were fireworks in Weymouth bay in the evening, which was an option and the showman engines all get lit up in the evening, a sight not to be missed. Sooooooo we decided to have an extra long day, silly but it would be worth it.

We decided to go home and have a little break or snooze, go down to see the fireworks which were at 9.30, once these were over we would go back to the Dorset Steam Fair to see everything lit up. We got to Weymouth bay at about 9,28pm, great timing watch a lovely firework display, a friend of mine, Roly, was doing them, it made a change to actually see them as in the past I was normally setting them off. At about 9.45pm we set off for the steam fair, we arrived there at about 10.30 ish, from a distance the fair looked fabulous and I was looking forward to seeing things close up close. We only had the push wheel chair and as everything was uphill, I decided to walk to the show ground. It was a bit exhausting, but I need to be able to walk as well, I need to  do this, bits of both, otherwise if you don’t use it you lose it as they say!!!!! 😀

imageThe scene was amazing when everything was lit up, the showman’s engines all lit up and working away, people chatting to the owners, taking photos and more than likely having a “pint” in hand. The atmosphere was just fabulous, something not to be missed, I’m so glad that we went back to see it. We had to join in and Laura had a half of cider and I shared a half of hot mulled cider with Sam, it was lovely. At midnight there was going to be a mass blowing of whistles from the engines, sadly, I was far too tired to stay on and we made out way back to the car park just after 11pm, Sam and Laura did try to push me back in the wheel chair but after about the 10th time of me almost being thrown out 😀, I decided that it was safer to walk back to the car!!!!

All in all in was a fantastic day, something I hope I will get to do again, only time will tell that!!!

Saturday 27th of August 2016

Hi again everyone, sorry I have been quiet on the blog but there has been quite a lot happening; not all bad!!! I have tried to make the most of everyday, and it has been fun, but some things have been difficult. About 2 or 4 weeks ago I started get pains in my right shoulder, I have had these on and off for a couple of years or more after a car accident, I was told that I had impinged shoulders and nothing could be done about them, but a few weeks a go they started getting worse than normal.

I decided that perhaps a physiotherapist may be able to help, the hospice offers these types of treatment, so I went to see someone at the hospice. She checked out my shoulder, which by now was very painful, and she said that I probably had tendonitis and I needed to rest it for a few months, not easy as I am right handed, but I accepted that.

imageOn Thursday 11th August Sam took me down to Paignton in Devon, A couple of friends of mine from Firework days were doing a show there so it was nice to go and see them, it was a great day out, sunshine all the way. We stayed for a couple of hours and then made the trip home, it was a nice to see the guys and it was nice to get out in the sunshine.

The following week 16th August I had to go to UCLH and have a scan and to see my oncologist Dr Shiu. UCLH had arranged a hotel for us to stay on on the Monday night as the scan was early on the Tuesday. My energy levels are pretty low at the moment so I was in a wheel chair. When we arrived at the hospital the first problem was wheel chair access, not very good!!! To get back down to the main reception was quite a challenge, using the staff lifts and corridors, at one point there was a steep slope to get down, nooooooo not on a wheelchair, we tried but it got carried away with me on board 😀😀, thankfully we only had one night there!!

The scan was done on the morning so that the results would be ready for my appointment with Dr Shiu in the afternoon. They were and we managed to discuss the results of it. The radiologist said that there were a lot of new “spots” in the liver, he thought they were lesions, Dr Shiu wasn’t sure, he thought that they could be spots of infection, so it was left a bit in limbo. It was decided that I would have another scan on the 18th October to see what had changed, I would have finished on the antibiotics then so hopefully we would be able to see whether it was infection or lesions. Thankfully, there were no growths showing anywhere else, so that was good news!!

After my trip to UCLH on the Tuesday, my shoulder started to become very painful on the Thursday afternoon and by Thursday evening I needed to go and see the duty Doctor at my GP. He checked it out and said I needed an X-ray the following day. Friday morning came and I was in so much pain that we called the GP out, after examinations he arranged for me to see the orthopaedics in A&E as soon as possible. Sam took me straight in and I had a blood test and an X-ray. These came back in about an hour and He then needed to take some fluid from the joint as he thought it was infected.

He took two syringes full of pus from the joint, and he said that it needed washing out. I was admitted and my shoulder joint was washed out at around 11pm on Friday night, they took another half cup of pus from the joint, a pretty bad infection eh!!!!! I had hoped that the following morning my shoulder would feel great, got that wrong as well!! It was painful but not as much as it had been. I was kept in over the weekend on IV antibiotics, they weren’t sure what to give as they were waiting for cultures to grow to see what antibiotics were needed. As I needed IV antibiotics I had to stay in hospital, another week just sitting there!!!!!! On the Monday I had a reprieve, they have a system called “hospital at home” it means that I can stay an inpatient but be at home!!!! I jumped at that, I am now at home and a nurse comes in twice a day to take my observations and to give IV antibiotics until these were finished, A great system.

I am staying at Sam’s, the nurses visit every day and this finishes on Sunday 28th August. I will be glad to get the canula out and get the use of my right arm back!! Sam and Laura are taking me to the Great Dorset Steam fair tomorrow, we used to go many years ago, so this is a great opportunity, they have booked a 4 wheeled drive buggy for me, I know that trying to walk around the fair would be impossible, so it’s a great option, I don’t like the idea of using a wheel chair, but it does help to use my energy in the best way possible. Next time I will keep you up to date on the trip!!!! 😀😀

Wednesday 10th August 2016

Hi again all, yet another lovely day today, the sun is shining here in Dorset, I haven’t  ventured outside yet but it looks warm as well!! I didn’t have a very good night last night, well it was OK up until about 4.30 am when the pains started again across my back. I had to call Sam in for the pain killers as I now have tendonitis in my right shoulder, which makes it very difficult to dispense the Oxynorm, which is done with a syringe. So, sadly when I have to get up because of the pain so does she at the moment because of my shoulder, what a hassle!!!!! Even typing isn’t that easy but I do try to get the blog done, I must investigate the voice thing on my computer, hopefully I can get that to work then all I have to do is talk to it 😀

I have spent a lot of today trying to sort out dictation on my laptop, at last it is working, but I’m not brave enough to use it yet, tomorrow will be the test day!!!! Apart from that I have been out for some fresh air, had a wander round Dorchester market and had lunch in town. the funniest thing was when Sam asked if I wanted to go to the village shop, about half a mile away. I said yes so she pushed me in the wheel chair, a one mile round trip with some quite steep hills 😀😀 It will help her to keep fit anyway!

Hopefully I will add another post tomorrow using this dictation thing on the laptop, and I hope that I will get a good nights sleep!!

Monday 8th August 2016

Hi everyone, what a beautiful morning we had today! I opened the curtains to be greeted by a lovely clear blue sky, the weather forecast is saying that next week some areas could have temperatures in the 30’s, what is going on??!!!!!!

I slept quite well last night apart from the pains I had at about 4am which needed a dose of Oxynorm, I call this Oxymoron as it comes off the tongue easier!! 😀😀. It takes about an hour to work so by about 5am I was feeling much better. I still need to get the background pain relief sorted, once this is done I’m sure I will feel much better, so fingers crossed. I hope to get to talk or see the doctors from the hospice today or maybe even the GP, I am hoping they can prescribe something that will help with the pain.

As you may have guessed, I am feeling well enough to start blogging again, I hope to keep this up together either daily or every other day. I really do hope that this blog is helping others, it does help me to be more positive. If it is helping others please feel free to share this wherever you want to, I know how difficult it can be if you have cancer, let alone a rare form of cancer which doesn’t really follow any set path, making it more difficult for the doctors to treat it. For those who haven’t read back to the beginning, I also have Primary Sclerosing Cholangitis, a disease that is very rare as well, there are only about 4,000 people in the UK with this, to have PSC and intra-hepatic cholangiocarcinoma is even more rare, this is why the doctors struggle a bit to know what to do next. So for those with rare conditions KEEP YOUR CHIN UP and stay positive, you can beat it! Positivity is the best way forward.