Tuesday 31st May 2016

Hi, sorry for not posting for a few days, I have had a couple of different days getting over the disappointment of not having my microwave ablation done, thank full the weather has ben good so I have been enjoying that sitting outside eating ice cream and strawberries, not both together, although they would be nice together!!!

It has given me time to think about what it going on, and hopefully that the ablation treatment will work ok, I am having my procedure this coming Thursday so hopefully it will go ahead this time, fingers crossed, my second procedure is on the 16th June at the moment, after that we just have to wait and see what happens.

Thursday 26th May 2016

The last two days have been different, yesterday, I spent getting myself mentally ready for RFA today, I have been nervous about it not knowing what to expect. Sam and I arrived at the Ibis hotel last night, yes the Ibis again, to find that they appeared not to have a room for us but eventually they did find one, by this time it was about 9.45pm, so just time enough really to find our room and then try to get some sleep. As you can imagine I had trouble sleeping last night and eventually at about 2am, I think, I managed to drift off to sleep, but I had to be awake by 6am as I had to have breakfast early because I was having a GA for the procedure.

We had to be in UCLH imaging for 11am even though my appointment wasn’t till 2pm, and as I wanted to go and have a look at a venue for the dinner before that we packed when we got back from breakfast and headed off towards Hyde Park. Instead of about 13 minutes it took us about an hour to get there, but it was worth it the venue looked great. Anyway that done, the specialist nurse had earlier suggested that I call her about 10am to see if everything was on time.  I phoned her at 10 to be told that the first patient was quite complex and they were running late so suggested I call again at midday. We set off on our way back towards UCLH, making a couple of stops on the way, at midday as requested I phoned to be told that the second patient was being difficult could I phone back at 1pm. Several phone calls later and we arrived in imaging at 2pm, the specialist nurse came out to see us, we were then told that I probably wouldn’t be on the table until about 5pm, as you can imagine I wasn’t too happy!!

I had been up since about 5.30am so I could have breakfast, we were told several times to find somewhere to sit but stay in touch until they were ready, by 2pm I was exhausted, at this point we had a slightly heated discussion with the specialist nurse, she disappeared off to speak to someone else, at which point a nurse came out from the recovery room to say “I hadn’t been forgotten” and quickly found a bed for me to lie down on, thank goodness for that!!! Then the radiographer came out to speak to us, she appeared to have no understanding of my situation, at one point telling us that she wanted to get home on time tonight!! By that time I had started dozing off, a nurse came in and took the necessary readings, blood pressure etc and brought in the hospital gown, slippers and so on. So, there I was feeling even more nervous as the procedure was getting closer, at which point Dr Bandula the radiologist came in to say “I have bad news” we have a problem with our first patient and we have had to stop all procedures!!! ARGH!!!!!!!!!!

I was somewhat angry, annoyed, upset, disappointed all in one, he said that it would have to be rearranged, I asked how long, he said maybe 10 days to 2 weeks!!! All sorts went through my mind, thankfully Sam stepped in and asked “what if the tumours were growing quickly, would they be too big for RFA?” He said that they would get a CT scan done before I went, I wasn’t going to leave without the results of the scan and a new appointment date.

The problem for me at tis point being I had arranged to do things in the next two weeks, Teresa has two weeks off from her job and we were going to go to Paris possibly and a couple of other places. The Paris trip was either going to be fly to Paris and have a couple of days there or maybe drive and see some of the countryside and take a few days doing it. That has been a bit screwed up now, the CT scan was fine, but they made the new appointment for next Thursday, meaning that it would be difficult to do Paris by car before and afterwards, well who knows how I will feel, should I really go to France in the first week after the procedure? I was upset again, at this point in my life I really have no idea how long I have left and if you miss an opportunity to do something then it may not come around again.

I’m not sure what we will be doing by we will make a decision and go with it, whatever it is, I know that they are interventional oncologists, but I just had the feeling they really didn’t understand my position at all.

I now wait for next Thursday to see if it happens then, I hope so and I hope that there aren’t any problems!!! My pains are getting worse again, so I do wonder what is going on inside and I will have to see about upping the strength of my patch to try to get some relief. So the saga continues………..

Tuesday 24th May 2016

make-the-most-of-todayHi, today is a fabulous day and I am making the most of it sitting in the garden enjoying the sunshine, eating an ice cream 😀 Yesterday really took it out of me again, and last night I had so much going round in my head I didn’t get to sleep until about 3am!!! Have I made the right decision, is it going to help as they say, will it increase the prognosis, all these sorts of things cross your mind and that without thinking about the treatment. Anyway, the decision is made, I’m sure it is the right one but it’s one of the most important ones I have had to make in my life, I will know more after Thursday and then again in a few weeks time after the second session. I have a great oncologist in Dr Shui, and all the other Doctors that look after my liver, Dr Webster, Dr Johnson  and Dr Chapman not to mention the specialist nurses and Macmillan support workers. I couldn’t be in better hands. I would recommend UCLH over any other hospital going on my experience, in fact, I do wonder if I would actually be here if I hadn’t opted to go to UCLH all those years ago, it was the best decision I have made, hence I’m sure that the decision I made yesterday with help from Dr Shui is totally correct, the team actually care abut their patients, they take in to account their circumstances, what they want to do and then advise as best as they can after that.

It seems that no sooner do I get home from London that I find myself going back up there again!!! I am going up tomorrow evening so that I am there for my procedure on Thursday, although it isn’t until 2pm I have to be in the imaging department for 11am and nothing to eat after 8am. It will be a nervous time I know that, but again I have complete faith in the team that are doing it even though I have only met the consultant once he gave me total confidence. It appears that I will have pain from the liver capsule afterwards but when that dies down then my normal daily pain should be less or possibly gone 😀 There are a couple of other possible side effects, these are bleeding, which is always possible when you are doing something to the liver and possibly infection, but they are far less than chemo.

I know all I will want to do is to get home once the procedure is done, all things being equal I should get out on Friday morning by midday when the doctor has been round I have had another CT scan, I hope so anyway, Teresa is due to arrive Saturday afternoon and I want to be there for that 😀 Hopefully, I will feel well enough for us to do a few things while she is here, make the most of any good weather we have, it may be just in the UK but it will be nice to have time away. Sam and Laura are already planning our next adventure 😀

As the picture at the top says once time has passed you cannot go back, so just make the most of the now, stop worrying about what might be, it hasn’t happened yet so you don’t know, but the NOW, yes, you can make the most of that. Too many people ponder on what might happen, worry about things they have no control over and then they miss what is important. Things like a special moment, if you missed a view because of the light because you were thinking about something else, you can never recreate it, that one moment in time is very special never miss anything if you can help it. Look around you there is so much going on, I used to miss lots of things because I was thinking about other things, not any more I try to make sure that I take in all that is around me, make the most of every situation. It makes no difference where you are in life, whether you have a prognosis like mine or you are just setting out in life, the advice is just the same, I wish I had learned that earlier in my life, it may not have been different but I would have enjoyed what was going on a lot more 😀

Monday 23rd May 2016

Today has been a day of mixed emotions, well in fact the last four days have been days of mixed emotions. On Friday I saw the consultant radiologist about RFA, radio frequency ablation, I learnt about that, about what they do and what happens, I am actually being put forward for microwave ablation, not only was I told everything, but I was given a date on this coming Thursday for the treatment, so I had to think about that. Today, I went to see the doctors in Harley Street about a phase 1 clinical trial, the trouble is that it is an either or, it’s not something that can be done together, I knew that when I got there, my head had been spinning all weekend, trying to put the pros and cons down, but not knowing what the clinical trial involved. I spoke briefly to Dr Shui on Friday evening about it all, but I’m not sure if that helped until I had seen about the clinical trial.

Anyway, today I tried to go with an open mind, easy you might think, but its not!!! When I heard about the clinical trial and what it involved it was very tempting, RFA  treats the known tumours and would leave me relatively pain free, but it wouldn’t treat any cancerous cells that could be seen or any elsewhere. The clinical trial would treat all the cancerous cells in the body, but it is a clinical trial,  so results aren’t really known, both had their merits and both had their downsides!!

My head was spinning, I tried hard to look at the pros and cons of each, in the end I had another talk with Dr Shui who was kind enough to come over to Harley Street to talk with me, Sam and Laura. We went though everything probably many times in a short space of time, I can’t really remember, my head was just spinning. In the end, it was agreed that at this moment in time RFA was probably better for me, after all in a months time or six weeks time if RFA hadn’t worked there may be another clinical trial that was suitable for me. So the decision was made, RFA this Thursday, I have to say that I am scared and nervous about it all, this could be my last chance but I hope not.

I stay positive about it all but as time moves on and the options diminish you know that shortly you will told how much time you have left. I will fight it as much as I can, in whatever way I can, positivity will help a lot, if I just give in then I know my time will be shortened. At the moment, apart from getting my head straight about the treatment, I am spending my time on arranging the fund raising ball for March next year, there are one or two things getting in the way at the moment, but I hope these can be sorted quickly and it will keep me occupied in getting everything ready. Look out for further details soon I hope

Saturday 21st May 2106

Even though I had lots on my mind I slept really well last night, actually I didn’t wake up until nearly 11am!!! I have a decision to make this week once I have seen the Doctors in Harley Street, I think my mind is probably made up at the moment but who knows, clinical trials can be persuasive so I will wait and see where we go.

IMG_2273I am staying with Laura this weekend as we are back off to London on Monday, and we went in to salisbury at lunchtime. We had an amazing and unexpected treat on the way back, we found out that The Flying Scotsman was doing a tour of the South coast and guess what, it was in salisbury, so we stood in the pouring rain for nearly an hour to get a glimpse of it on its way to Southampton, what an amazing sight!!!!

Not something that was on my bucket list but certainly something I never thought I would see, what a treat, life really does seem to give you the opportunities when you lest expect them!!! 😀 So, always look out for those opportunities, make the most of them and go for it, it would have been easy today to have missed this one

I am going to try and have a quiet weekend and catch up on my sleep with any luck, but who knows what is round the corner!!! My pain is starting to come and go again, whether it is to do with the patches not working as well as they were or I am just getting more pain I don’t know, it is really tiring having pain and dealing with it. Hopefully if I have microwave ablation it may help with the pain, as the tumours should have been removed, time will tell on that one.