Sunday 7th August 2016

Hi all, it has been a while now since I last posted, and a lot has happened over that period. Just over three weeks ago I booked myself into the Joseph Weld Hospice in Dorchester to help sort out my pain relief, trying to get the pain maintained so that I could try to live as much of a normal life as possible.

It was working well and my pain was being maintained well, little did I know what was going to happen next though!! I checked in to the hospice on the Saturday, on the following Tuesday evening I started getting quite bad pain in my stomach. I was taken to the local hospital on the Wednesday afternoon to be checked out. After being checked over everything was found to be alright and I went back to the hospice, I had a nice tea and I slept quite well. The following day, the Thursday, was a good day, I had been found to be anaemic so I was transfused 2 units of blood, I slept for most of the day. Sam came to see me on the Thursday evening, and after tea, I had really bad pains in my stomach again, I was given intra muscular morphine and buscopan to see if it would help. It made me sleep most of the evening, I woke up needing to go to the loo, when I went my motion was red, it seemed that I was bleeding. The hospice called in the doctor, and he came to speak to me, when he arrived I was feeling very sick and I threw up, again it was red, more indication of bleeding, I wasn’t that worried, but the Doctor spoke to me and he said that I should go into hospital ASAP, he seemed very concerned and it was obvious that he wanted me to go so I did, this was made obvious when he said he had requested a blue light ambulance.

This was supposed to be an emergency, however, it took over two hours to arrive!!!!!! When it did arrive I went straight to A&E, the duty doctor there knew a lot about me, thankfully, as I didn’t have to try to explain everything again!! Everything seemed to be OK so I was given painkillers, had a chest Xray and was then transferred to a ward.

This is where everything happened!!!! After being there for about half an hour I started getting pains across my back and going straight into my shoulders mainly the right shoulder I think, at this point the pain was so bad that I can’t really remember that much. I know that the A&E doctor came up and he gave me as much morphine as he could, this didn’t seem to work. I think from this point on I was getting so much painkiller that I can’t remember anything. The Friday I can’t remember anything at all, but I have been told that it was touch and go, I had a massive internal bleed, and the interventional radiologist at Dorset County Hospital (DCH) had been called in as I had a hole in my hepatic artery. It will take too long to go in to but I had lost 5 pints of blood into my body cavity, I only have 8!!!! No wonder Sam and Laura said I looked grey!!!

I had a procedure on the Friday afternoon where the interventional radiologist embolised the hepatic artery to stop the bleeding, apparently the procedure was a difficult one but he did an amazing job on the holes in the artery. Whilst he was repairing the artery he looked at another vessel and tested it, this one shattered too, good job he looked at it! He embolised this one as well!!

I came round sometime on the Friday night and I was moved to the palliative care ward, my sister stayed with me on the Friday night as Sam had been awake for about 42 hours and Laura about 30 hours, they came back in to the hospital as soon as they could on the Saturday. I was very weak and I had a fluid drip up and I was getting regular IV antibiotics, food was the last thing on my mind and I didn’t really feel thirsty but I needed to do both of these.

Over the weekend I just tried my hardest to eat and drink and by the time Monday morning came I was feeling a lot better. I had a stream of doctors in that treated me on the Thursday night and Friday, most of whom I didn’t recognise!!! Dr Tippett came in, the consultant interventional radiologist, he explained what he had done, as he was leaving I said thank you for everything, his response was “It wasn’t me it was you, if you hadn’t been so stubborn we would have lost you” This seemed to be the response from all the doctors that day, basically that I was a stubborn bugger and that is what had got me through it all!!!!

Anyway, I have been staying at Sam’s since coming out 2 weeks ago and I am feeling much better, some problems with pain but I am getting there. I do find it very strange that on one Friday I was facing death, but the following Friday I was being released from hospital!!!!! I am still very weak and have to use a Wheel Chair a lot but I am getting better, I am getting great care from the hospice and my temporary GP so I hope to be home soon looking after myself.

Monday 11th July

Another day dawns, early as usual, but I am feeling better than I did, it’s only 6.30 am and here I am writing an entry in my blog, well I have to fill in the time, breakfast isn’t until 8.30am, cooked again I hope, I’m looking forward to that, not a scrap of fat on anything, bacon, scrambled eggs, sausage and toast, lovely!!!! One thing I will say about the steroids it does increase your appetite, I just want to eat and eat at the moment!!!

I’m sure that the steroids are having a real good effect on my pan relief, it is definitely easier since I started them and I am due to have the dosage changed on my fentanyl patch today, probably up I think, but it’s another step toward controlling the pain so I will be better when I get home.

I did manage to get through the night without any oramorph which is good, I do wonder if oramorph is more active than sevredol though, they are both supposed to be the same – now there’s a question?

Looking out the window the weather doesn’t look to good to day, but there again, it did brighten up yesterday, after all it is July, it is supposed to be sunny 😀😀

The food is really good here, I haven’t missed a meal yet, so maybe I will get some weight back on, help me get my energy back. I have a great electric recliner chair here by the bed it is really comfortable, so I am looking in to getting one for home. I can get in a really comfortable position to read, use the laptop or just ……………………………… SLEEP 😀

 

 

Sunday 10th July 2016

Well I spoke a little too soon on Thursday about the pain being under control, it came back with vengeance on Friday and especially Friday night, so Saturday I called the palliative care nurses and talked to them about what to do next. I was then passed on to the palliative doctor that I have seen before and we chatted through everything, the upshot was that she suggested that I go in to the hospice to get the pain relief drugs correct as being in the they can monitor what is going on and get drugs and dosages correct, I must admit, when I spoke to her on Thursday she did suggest it then but I declined, so, this time I decided to go for it, I now wish I had done so on Thursday. That was a good decision, I was taken in to the hospice yesterday, Saturday, at about lunchtime, I have fantastic care ever since I arrived and by late afternoon my pain level was right down. The Hospice doctor assessed me as a whole person and changed a couple of things, so I am now on steroids again, oramorph for breakthrough pain relief and Gabapentin, then at night I can have Lorazapam to help me relax and sleep.

I didn’t sleep too well last night and ended up wandering around the hospice at about 3am!!! But I did get t sleep at about 4am after more oramorph and half a lorazepam.

I could be in here for a few days to get things sorted, but a long as I can leave knowing that I have the pain under control, what to take and being on the correct drugs I will be happy 😀. Maybe then I can start getting back to being as normal as I can be, it would be so nice to drive again and be independent, I hate having to ask people to do things for me or go and get things for me, it drives me crazy. I know I can’t at the moment and I should just accept, but I find that difficult.

When you get a diagnosis like the one I have had, I don’t think you really realise how many obstacle get put in the way as you go along. I am taking decisions based on the information I am given, I know there are things that I would like to do but at the moment I have had to seriously look at what I will be able to do, so I whittle these down to the really important ones. I am nearly there with that and if I manage to get some of the others back in that would be fantastic, but now it a time to be realistic!!!

This afternoon there was a fundraising event at the hospice, Pimms and Cream Tea, sounded so good and the weather was soooooo beautiful that I just had to go to it, NO Pimms of course 😀, Laura and my sister have been her most of the day so I feel a bit exhausted now, but I hope I will get a good nights sleep tonight time will tell

Friday 8th July

IMG_2278Hi all, it has been a while since I woke up feeling OK instead of in pain, but today , so far, I feel pretty good. It has been 5 weeks no since I had Radio Frequency Ablation, the results seem to show that all the tumours have been removed, apart from the primary, and so I am told it has bought me some more time. The only thing I would say is that it would have been nice if I had been told that recovery would take this long. Initially I was told that I would get a small amount of pain, possibly flu like symptoms and that I should be back to normal reasonably quickly!!! Now five weeks down the road I am being told that because of the size of the tumours it was the equivalent of having about half of my liver removed and recovery will take longer, if they had said this to start with you can prepare yourself mentally for maybe a 4-6 week recovery rather than getting frustrated because recovery isn’t as quick as I had hoped!

I think that communication is paramount when you have an illness of any kind, but when you have a procedure that is as radical as the one I have had it is even more so. If you know that you won’t be able to do things for a few weeks then you can plan that in to your life, if you are told 2 weeks when actually it will be 6 then you feel that you are losing part of your life, it may sound silly, but to me anyway, it is important to be able to make the most of my time, the image I have added today is so relevant!!

Anyway, my pain relief is getting under control, I think 😀, I am seeing Dr Shiu my oncologist in about 10 days so I can see how things are doing and Sam and Laura are taking me away for a few days in a couple of weeks time, hopefully, just to sit and relax and enjoy life!!!! So I need to rest until then so that I give my body a chance to recover, I didn’t even get out of bed yesterday 😀

 

Wednesday 6th July 2016

imageAnother day, another sunny morning. I have had a few days of trying to sort out the pains that I am getting, one day I feel OK, the next I have pain and just feel exhausted. I am having an endoscopy to rule out a possible ulcer which hopefully it will, if it does then I know the pain is from the ablation, if not then at least they can treat the ulcer. I also have an appt to see my pouch consultant to make sure that this isn’t coming in to play with the pain, all in all there is no one consultant that an give me all the answers now, it makes it very difficult when I have a problem!!

I am finding it very difficult not having the energy to do things, the mind wants to do them but the body just can’t, I do hope that I can soon, I don’t like having to rely on someone else. I wan to be able to walk in the sunshine, or rain, as the case may be, I want to be able to go away without being worried about getting pains or becoming ill, all these things that I used to take for granted have been taken away at the moment, I don’t know if I will get the ability back but I really hope so. I try very hard to do these things but having lost a lot of weight I have to build myself up again to able able to even start. My positivity hasn’t gone, I am just telling it as it is, I am positive that I will try my hardest to do the things that I still want to do. I am grateful for the friends that I have, they are all there to help if I need it, but it also shows you who your friends really are!

Today has been another different day, the pains come and go, the tiredness is like being hit by a bus when it happens so suddenly, I stay positive and can only hope that soon I can at lest be back to where I was a few short weeks ago. This disease just seems to happen so suddenly, it changes quickly and I just have to deal with whatever it throws at me. Tomorrow is another day I’m sure I will take another step forward, another step towards doing the things that I used to!