Saturday 30th April 2016

Sorry I didn’t put anything up yesterday as it was quite a busy day. I had quite an early start as I had to be in endoscopy for 8.30am, as it turned out I didn’t actually go into the room until just after 10am! I was having propofol a mild anaesthetic, much better that the sedative some get offered, you go out like a light and the next thing you remember is coming round in the recovery ward. However, this time it was a bit different, although I hadn’t had anything to eat for nearly 14 hours I still had food in my stomach so they could only just keep me under, I can remember trying to talk, I didn’t feel a thing but I am told that I moved about a lot during the procedure. 😄  They did find that the stent had moved up into the bile duct and they only just managed to get it out using this procedure, thankfully. They also found stones and a lot of sludge and the stent was blocked, this has all been cleared now so I hope I will be OK for a while, they also put a bigger metal covered stent in this time so it won’t move, they hope this will last for about 6 months before it needs to be changed again.

It has been quite a week really, I arrived UCLH on Thursday, blood tests then my clinic appointment with Professor John Bridgewater, and then on to a pre-assessment for my ERCP GA straight afterwards. Thursday I was able to have a bit of a lie in as my CT scan was at lunchtime followed straight after by chemo, this left me exhausted, it was so nice to be able to stay up there in a hotel rather than drive home. Then Friday the dreaded ERCP, unusually for me when I was in the recovery after the procedure I slept for most of the time. I was allowed home at about 2.30 which was nice, I managed to almost navigate Sam out of London before going to sleep!!! 😀 Thankfully between her shouting Dad which lane and me waking up we made it to the M3 safely 😀 It was quite a long trip being the Friday before bank holiday and we arrived at Laura’s about 5.30. As you might guess I slept most of the way there.

We had tea with Laura and then headed home just after 9, I was absolutely exhausted when we got home and very cold, Sam made me a hot water bottle and before I knew it I was fast asleep, waking up for my meds about 7am. Looking out of the window this morning it looks lovely and I intend to enjoy the sunshine and make the most of the day. I have to go in a collect a new pair of glasses today, although I wear contact lenses, I find that I have to wear glasses more often as my eyes seem to dry out quicker, my last test also showed that I have the start of a cataract in one eye, hey ho getting old hey!!! 😂

Sam is picking up her new car today so I am going along with her after collecting my glasses, I might be able to see it then 😀😀 Car collected with lots a free goodies!!! It looks lovely, a metallic blue VW Polo TSI Match. Then rest of the day has been relaxing and thankfully the pain from the stent insertion is now subsiding, I think the Dexamethasone (steroid) is probably helping too, I’m looking forward to another good nights sleep again tonight, I hope!!! I’m glad this week is now over, just three more days and I am back in London for CT scan results and day 8 chemo, what a life I lead!!!! 😀

Thursday 28th April 2016

bad-hotelSecond day at UCLH over, now back in the nightmare of a hotel, the Ibis Euston station!!! We arrived back after a long day of chemo and CT only to find that the electric key didn’t work, then they blamed us for having it alongside a mobile phone, what rubbish, firstly it was nowhere near a mobile phone, secondly I don’t think they have any effect on these keys!!! Seems strange though that we weren’t the only ones with the same problem!!! I repeat DO NOT STAY AT AN IBIS HOTEL!!!!!.

My CT went well this morning, I will get the results next Wednesday, it’s another two days at UCLH next week now as I have day 8 chemo on the Thursday but at least on Wednesday I will have an idea as to how the chemo is working, it may be too early but I hope it gives some idea as to what is happening. The trouble is that everyone says that I look too well to have cancer, even the radiologist this morning!!!!

The second of my chemo drugs, Oxaliplatin takes 2 hours to have, this time my arm was a little sore about three quarters of the way through, apparently if you get this it the arm has to be kept warm, the nurses said to keep an eye on it and call if there is a problem, but at least this time I am right on the doorstep of UCLH if needed. 😀 I slept for most of the afternoon during chemo so I hope that I will sleep tonight, I must say that I do feel rather tired now. The effects of the Oxalipatin seem a bit more pronounced today that the last two sessions, but I suppose that will be the build up of toxins in my body, all I feel like doing is lying down and resting at the moment, something EVERYONE keeps telling me to do, and I will this time!!! 😂

It is so nice just be able to walk back about half a mile to the hotel, after day 1 I normally would have a drive home of about 3 hours depending on the traffic, after which I am totally exhausted. I would rather come to UCLH though, at least here if there is a clinical trial available, I get the chance to be on it, if I was having chemo in Dorset I probably would never even hear about any trials. Now to have a nice rest, a meal and a Bath hopefully then on to sleep before my ERCP tomorrow 😩 It is an early start as I have to be in endoscopy for 8.30 in the morning but at least I am having propofol thank goodness!!!! I will let you know how that goes tomorrow.

Wednesday 27th April 2016

Sorry yesterday’s post only appeared today, I thought I had published it last night but obviously I didn’t, just a senior moment!!!! 😂 Today didn’t start very well, I had to be up early to leave at about 8 to go to UCLH for a busy three days, I felt fine first thing, had breakfast and a cup of tea then went for a shower. All good so far, but ……….. after I got dressed I started to feel hot and clammy, I had a pain in the centre of my stomach and felt generally horrible!!!! I have had it slightly like this before and I have had the time to lay down and just let things settle down, no chance this morning!

Sam brought the car as close as she could and loaded our stuff in and I just about managed to get to the car and strap in, I felt really bad, in fact I thought that maybe I would need a wheelchair to the hospital and I could be kept in. Once underway I managed to get to sleep, for Sam, she has only driven into London once before, I was asleep and she didn’t really know the way, she did have a contingency plan rather than wake me, she remembered enough to know that she could reach UCLH on the A303, M25, A40 it may not have been the quickest route but she would get me there, I think she may have been a bit worried this morning as I don’t think I looked or sounded very good!!!

Anyway, fortunately I woke up after about and hour or so, I think I could hear a sigh of relief as I came round as my usual self, looking for Google maps to see which was the quickest route in to UCLH. I did actually feel much better thankfully, and so far I have been feeling OK, so I had a another question to ask my oncologist, I must say that a lot of things went through my mind as to what it could be, I think I was little worried.

We arrived in plenty of time so no worries there, straight in to the Macmillan centre for my third lot of blood tests in a week. Everything just seem to run smoothly today, I thought that I had about an hour to wait before my appointment, but oh no, we had just started to have a coffee and cake and we were called upstairs for my appointment, the appointment was at 1.15 and it was still only 12.15, so we still thought we had time to wait and relax before being called. We did a bit, I was called in at about 12.55 by Professor Bridgewater, he is the person that developed the best chemo treatment for my type of cancer and I think is at the forefront of research for it. I spent about 15 minutes with him asking my questions getting answers, he is a lovely guy putting me at my easy without even trying, we discussed my episode this morning and it appears that I may have a peptic ulcer amongst other things!!!!!

I felt relieved that it could be that, as I said earlier I did wonder if it could be other things, so in my ERCP on Friday I hope that they are going to have a quick look to see if there is one there. I asked about my CT scan results and I will be coming back up again next week to get these the day before my day 8 chemo session. I am getting used to being in London now!!! 😂

Thembie introduced me to my specialist nurse Shirley, I have only spoken to her on the phone so it was nice to meet her. I have to say that everyone that is involved in my care here are wonderful, so caring and helpful, I want to name them all so far because they deserve the accolade, The hepatology team Dr George Webster, Dr Gavin Johnson, Dr Michael Chapman and Professor Steve Pereira, my oncologist Dr Kai-Keen Shui and Professor John Bridgewater and of course Thembie my Macmillan support nurse and  Shirley my specialist nurse, also the pharmacists and all the staff in the chemo unit, I hope I haven’t missed anyone out, generally everyone here seems to go out of their way to help.

I had to see the pharmacists after this who discussed any problems that I may have have had with chemo so that they can make any changes if needed, not long after I had finished there then I had a phone call from Pre admissions asking if I could go in earlier to get that done, wow, everything happened so easily!!

After I finished in UCLH I went to book in to the hotel that had been arranged for me, a word of warning do not stay at the Ibis hotel Euston, it is terrible, wrong room, then given a key to an occupied room and then eventually put in a room that was not exactly clean. Sam went off and spoke to the manager as by now I was feeling somewhat exhausted, the manger was not in the slightest bit interested!!!!!! Anyway, it is home for the next couple of days while I have various procedures which I will go though over the next couple of days

Tuesday 26th April 2016

even my tired is tiredIt was lovely this morning in some ways, I woke to my alarm at 7am then went straight back to sleep to be woken by my phone going off at 9.40!!! It was soooooooo nice to have a lie in, so i just decided today was going to be one of those days doing nothing!!! 😊

So did nothing, until lunchtime when I remembered that I needed to get my blood results from my GP. What a hassle that turned out to be!!! Normally, I have no trouble at all with getting them, bloods done one day results the next, oh no  not today ,on a day I could have done without any hassle. I phoned to ask for them, no they didn’t have them, normally the doctors have access to the main computer so if they haven’t been sent to the surgery they can access and print out when needed. I asked if a doctor could do this and could I collect them this afternoon, not a problem was the response. I went up to the surgery at about 2pm, to be told “we don’t have them back yet” 😱 45 minutes later I eventually managed to get a copy of them, UCLH wanted the today so I asked if they had been faxed through to them, I was told yes that have. I contacted Thembie at UCLH and left a message to say that had been faxed, an hour later she called to say she had asked again for them to be faxed as they hadn’t received them an hour earlier!!!!! They hadn’t been sent the first time, sadly my GP’s surgery has had a change in reception staff and it is not a good change!

Anyway apart from that bit of hassle the day has been quite quiet, I have to leave for UCLH at about 8am in the morning as I have to have blood tests done before the clinic appointment tomorrow afternoon, then a pre-op assessment for my ERCP on Friday morning. I hope that I can still have chemo on Thursday , I’m not sure as I am having an ERCP on Friday, we will have to wait and see, I would rather it was all done while I am there.

Monday 25th April 2016

Today has been a pretty quiet day for me, I had a return of the back pain early this morning but managed to find a comfortable spot and got back to sleep! I couldn’t really have a lie in as I had to have blood tests done at 10.15 for UCLH so they can have them for Fridays ERCP, I expect they will be reduced as the colour of my wee has returned to a more normal colour, thank goodness. One thing I am finding at the moment is that if I exert myself, something like just getting dressed in the morning or as happened this morning just walking in to the doctors, I break out it to a cold sweat, feeling a bit clammy, I don’t know why, but it may be down to the morphine or even just a combination of pain killers, chemo, cholangitis, antibiotics and the cancer.

It is a bit worrying, especially when I am out, its OK when I am at home I just go and lie down until I feel better, but if I am out I feel as though I may faint, it’s probably just a vicious circle when that happens, the more you worry about it the worse it gets. It seems to be worse in the morning, however, it just has happened this evening, it is quite debilitating when it does happen, I can just go all weak. There is so much going on inside me at the moment that I don’t know what it is, I hope that after my ERCP on Friday it will start to return to the way I was, if not, then I will have to see what can be done to keep it at bay, if anything can be, maybe I will have to learn to live with it!!

Tiredness is also something that I keep mentioning, today for example, I had coffee with a friend, arrived home at lunchtime, took my paracetamol and sat down before getting some lunch. Before I knew it, my meds alarm was going off again and it was 2pm, it was about an hour and a half later!! I had been totally out for the count! I know that I have to just accept it, but it does seem to be getting worse, could it be the toxicity building up? I don’t know but I suppose it is possible, add to that the opiates that I am taking …………….. I have a few questions for clinic this week, all I want to do is understand why or at least what is causing it. Once I can get my head around all of this I will be happy.

I should be able to give more news on the charity fund raising dinner for PSC Support soon, everything is really coming together now, so look out for more information on venue, date and where and when you can buy tickets. I can tell you it will be early 2107 and I have some great music and fun lined up for the night. I hope it will be something that everyone would like to come to, I am getting excited about it.🎉 🎉 💥