Thursday 31st March 2016

IMG_1379What a beautiful morning it is again today, Spring certainly feels as though it is here, apart from at the chilly nights. Last night for me was a better night, pains were still there but with my new pain relief regime it was kept at bay, and I slept most of the night even with taking tablets at midnight, I still woke again at my usual 3am! Unlike normal though, I was able to doze on and off until about 6am. I feel a little better this morning for that, I do however, have a little tenderness directly below my ribs in the centre, not sure if maybe this is my Jpouch or my liver.

It’s nice to feel well enough today to try to finish off work that I still have, once this is done I will have to rethink and see where we go. It is work that I started prior to my diagnosis and starting chemo so it is something that I need to finish as soon as possible, up until now I haven’t really felt up to it so I will try today and see what happens.

I think I will have to give up work as it is so hit and miss as to how I will feel, once I have seen the MacMillan benefits support person I will know what I can get and whether I can live on it!! 😀 I mentioned yesterday that I was falling asleep standing up, I have now found out that about 3 or 4 days after chemo I will probably feel like this, now I know, I can adjust things to suit. It is all to do with learning how chemo will affect me, when it might and how I deal with it, I will not be beaten by this cancer. Everyone around me is being so good and helpful, from consultants down. I had a letter from Dr Webster the morning outlining the telephone consultation we had last week, it was so nice to hear him so enthusiastic in wanting to make sure that my liver behaved itself and the bile ducts remained unblocked, so that I stood the best chance of fighting my cholangiocarcinoma.

Thankfully, today I have been able to finish off some the things I needed to do, although I am feeling a bit weary now I am a lot better than yesterday, I will start to get in to a routine soon and I will know what to expect. I know chemo affects everyone differently, so I can only deal with it the best way that I can. No chemo this week so a chance to have an extra weeks rest and recovery before back again next Wednesday for clinic and then chemo on Thursday morning.

Wednesday 30th March 2016

To show that things are changing all the time, and you need to remain positive about everything, there was an article posted by Martine Walmsley, on the support group Facebook page last night, setting out research that is being done, mainly in the good old USA, on cholangiocarcinoma. It is to do with how the bodies own cells are being harvested and used to kill off cancer cells. WOW that sounds really interesting well worth the read if you have the time. Cholangiocarcinoma research article.

You never really know what is just around the corner, be it good or bad! I look at it that the longer you can survive, the more chance there is of a treatment being found, not necessarily a cure, but a treatment that can prolong things until something else can be found. It’s not false hope, but very much being positive, in this day and age scientists are coming up with new ways to do things, managing to find out how the body really works. Our bodies are so complex that I think no one really understands even a small percentage of how things actually happen. I think, by trial and error, over the years scientists have managed to understand some of the processes of human life, but I’m sure there are many we don’t know about as those that do!! Take PSC for example, it is known as the last black box of hepataology, it’s not understood at all as to why or how we get PSC or even how to treat it, all that seems to be known is that it is connected with other auto immune diseases. Maybe discoveries have always been made but because I have been diagnosed with cancer perhaps it is more in the forefront of my mind. Either way, I’m sure that great steps are being made against cancer, and seeing this article does give hope, it’s just a shame it is US-based. Perhaps if we can get the fundraising bandwagon rolling here, we can encourage more research in the UK on both PSC and cholangiocarinoma.

Today has been a different day yet again for me, I did wake early as usual but I have been in pain most of the night and had to take extra Oramorph. I felt so exhausted that I decided to stay in bed this morning, something I NEVER do, but I just couldn’t get going, I eventually got up about 11am. Ever since then I have felt in a bit of a daze, hardly being able keep my eyes open, I haven’t really experienced this before, tiredness yes, fatigue yes, but virtually falling asleep on my feet………. No. Its now just after 3 and I am starting to feel a bit better, perhaps is a combination of the pain, the Oramorph and the other pain killers. The URQ pain hasn’t subsided much today, but I suppose things like this are to be expected, it’s a different day for me but I wouldn’t say a bad day, I am just learning to live with the disease I have, staying very positive and adjusting as needed.

Don’t laugh, but I even find myself singing away at 4 in the morning with a big smile on my face!!!!! There is always a positive to everything, the negative here though, is that I think all the local cats and dogs joined in with me 😂😂!! No I am not going to make a recording 😀!!!! Every day is a challenge, every day is very much different and every day I learn something new, we all do if we look at things in the right way. If everything went well, we don’t learn much, it’s when things go wrong that we learn the most, by learning from the things that do go wrong, we can perhaps make different decisions in the future.

I know a lot of people can and do think “Why me? ” I have never thought that, to me it is a challenge, about beating the odds. Yes, on day one I was quite upset and gobsmacked at the news, but once you accept things as they are you can move forward, deal with the hand you have been given, and make the most of everything. I chose to write this blog because I hope that it may help others in a similar situation, it also helps me to look back over the days and weeks, months and hopefully years, to see what has happened, so I can remember that there are good and bad days, and how I dealt with them!

Tuesday 29th March 2016

Today I am one year older, its my birthday!!👑💥🎉 😀😃 But it’s still starting at 3am as usual. I have the pains back in my URQ and right across my back, I can’t seem to work out why some days are good and others not so good, perhaps my body goes through a cycle with the chemo treatment. I have to remember that the chemo is still working days after being given, and at about 10 days after the treatment, my white cells are at their lowest. 10 days after the first session was yesterday, so maybe that has something to do with it. I have a lot of questions for Dr Shiu when I see him in the clinic next week, Laura keeps telling me to make sure I write down everything that I feel, any questions I have etc, so that I don’t forget to ask anything. The trouble with chemo I would think, is that it affects everyone differently, so there can’t always be one answer, some people may get a worse reaction to it, or get a problem more intensely than others.

What a fabulous day weather wise, clear blue skies down here in Dorset, so nice to be able to get out in the sunshine. The pains have eased a bit now, I have spoken to my MacMillan support worker and spoke about the pains 24 hours after chemo and they said that it is possible it could be the effects of the chemo, so I just have to get used to it and be prepared with extra pain killers, not a problem as long as I know it will probably happen. I was having a bit of a panic too as I really like having muesli, fruit and yoghurt for breakfast, but I had read that you have to be careful with yoghurt, NO PROBLEM, I can still enjoy my breakfast, but I suppose the bacon sandwich I had in its place yesterday and today wasn’t too bad either!!! 😂 😂

Tiredness is hitting hard again today, been dozing on and off on the sofa this afternoon, but I suppose that is par for the course, it’s better to give in and sleep than to fight it, it’s the body’s way of healing itself. I’m also finding that I am back to getting niggly aches and pains across my back in the run up to taking my next meds, paracetamol at 3pm, these normally appear in the hour before tablets are due, sometimes I find that I need to take a dose of Oramorph to get me through, I think I will need one of those today!

I have a nice healthy meal planned for my birthday this evening 😀 We celebrated my birthday early this year, as Sam was going to be away and it will be on a working day for Laura, so I am cooking for myself this evening! I think I am going to have roast chicken breast with jacket potato, served with braised sweetheart cabbage and braised carrots, followed by a fresh cream apple turnover, not so healthy 😄!! Well it is my birthday 😂😀!!! I actually feel hungry now, I hope I feel like eating it once it is cooked!!!


Monday 28th March 2016

As they say today is another day!!! Different yet again, but if they were all the same it would be really boring wouldn’t it? Not much sleep again last night, awake till about 5am then dozed on and off till about 8. Not really sure why as it was not pain related, the new pain killing regime appears to be working, or it could be the inflammation is disappearing or maybe ………………….the tumour is getting smaller already, who knows, all I know is that I am in very little pain at the moment!

I have to keep reminding myself its Easter, it doesn’t really feel like it at all, probably because I have other things on my mind, or it could just be that our religious festivals have all become so commercialised they are easily missed with all the hype about “buy this” and “buy that’!!

After not a lot of sleep, I am taking it easy today, as I keep saying, it is important to listen to your body, this is as important with my condition as it’s with PSC and many others. The body knows what it wants, but we quite often insist on pushing it to limit, I know I used to, but I have now learnt to listen.

It is so nice to have the clocks change and have the lighter evenings, not that last night was that good, here it was absolutely bucking down and very dark at about 6pm, hopefully today though, with the weather being brighter, it may stay nice well in to the evening. Summer is on its way, I do hope that we have a good one this year, I love being outside.

I’m feeling totally washed out this afternoon, I was sitting on the sofa and the next thing I knew it was an hour later!! 😀 Either the PSC or the chemo are catching up with me or a combination of both – I have been told that the chemo will make me tired and that I will have good days and bad days, guess it’s just “going with the flow” again today 😇

In the middle of the night you do tend to let your mind wander a bit, in the effort to find that elusive sleep, obviously you will ponder on the information that you have, tying to get your head around what is going on – To me, it still feels so surreal that all this is happening, it’s not that I don’t accept it, it’s just that as I keep saying, I feel so good considering. My way through is to accept what is, make sure that you take each day as it comes and live life as best I can. Friends and some family can find that hard to accept, but in not doing so, they are just wasting whatever time there is left, be it months or years – I am me, I am here now, let’s enjoy the now, tomorrow can take care of itself when it arrives, everything in life does happen for reason, it is up to us to learn from it or not whichever the case may be 😃

Sunday 27th March 2016

Did everyone remember to put their clocks forward an hour last night? In this day and age with technology and smartphones it should all happen automatically, but some of us oldies still have an analogue clock by the bed, as well as the dreaded smart phone!! When you take regular meds though, this can cause a problem, I am due to take paracetamol at 3am, my alarm woke me at 3 (new 3am) my analogue clock said 2am, thought the clock had stopped again!! But seriously, if you can only have so many tablets in a 24 hour period before overdosing and you lose an hour, how does that work? Paracetamol are the only tablets I take to the maximum at the moment, so, I have decided that having taken the 3am ones an hour early, perhaps, if I take the next ones a half hour late and then the next ones 15 minutes late the should even everything out a bit, does that make any sense? I ramble on!!!! 😄😃

Last night was a good night, I slept well thankfully, only coming too for my meds then going straight back to sleep, oh to be able to do that every night! I have a little bit of URQ pain this morning but nothing that can’t be dealt with, and some energy!! I was looking forward to my breakfast of Bircher muesli, fruit and yoghurt this morning but I have been looking at advice, and it seems that when on chemo sometimes you need to stay away from live yoghurt. I hope not but playing it on the safe side and waiting until I can get a definitive answer from Dr Shiu, the other thing I have been taking, which has been a great help with my JPouch is a probiotic called VSL3. This has millions of live bacteria, but yet again the info sheet says “talk to your doctor” so that’s on the back burner at the moment, it will be  a bit of a bummer if I can’t have my yoghurt and the VSL3!! I have to be so careful about infections, especially around the 10 day after chemo mark, when apparently I will be at my most vulnerable because my white blood cells will be at the lowest, hopefully after that they will increase again until I hit the next 10 day marker.

If anyone reading this has a Jpouch, I have found VSL3 to be invaluable in the short time I have been using it, it helps such a lot with the problems you can get with a Jpouch, I really hope I can continue to use it.

This morning I am feeling surprisingly good, as I said a bit earlier I have some energy as well, but I think I know why. It is said that if you de-cluttering your life you leave space for other things, get rid of the things that are weighing you down. Last night I started clearing out all the clothes that are far, far too big for me now, I’m amazed how many I have!!!! Some, you could get two of me in to 😂. I’ve decided that I may be ill, I may look ill at times, but I am going to dress to look good  in clothes that fit properly 😀, looking good I’m sure makes you feel good. Not sure if I can maintain my current weight but I am going to give it a good go, eat, eat and eat!!! It really does feel as though I have had a big weight lifted off of me today, it’s a strange feeling but a nice one, couple all this to the positive energy and WOW I’m away!! Today is a doing day, tomorrow may not, so I just listen to my body rest when it tells me and make the most of the days like today, the weather outside may be rubbish but I’m feeling good inside here de-cluttering 😀

All the de-cluttering is now done, washing all done and drying, next stop the ironing 😀😀. Just going to sit down now and watch the boat race while cooking a nice meal of jacket potato, roast chicken breast with broccoli and peas, looking forward to this, yummy!! I try to make sure that I eat as healthily as possible, hopefully this will give my body the goodness it needs to fight off any possible infections and maybe even fight against the cancer!!!! Still pretty full of energy , can’t understand why, but hey let’s make the most of it.