Friday 23rd September 2016

Sunshine again today, September is turning out to be a lovely month, not as warm, overall, as August but still nice. Laura and Sam are going to me this weekend which will be nice, I think they are worrying a bit about how I am managing, but I’m  doing well, Sam also wants to make sure she does my tablets!!!! My oxycodone is now down from 200mg twice a day to 100mg twice a day, this will come down again to 80mg twice a day next Monday. I’m so glad that the pain killers are coming down especially the morphine as this is the major cause of the constipation that I am getting, and the pain associated with it.

I saw my GP on Wednesday as I have been a temporary patient while staying with Sam. She is very good, we went through what had happened, and the drugs that I am now on, making sure that they are all on the system so I can get them when needed. Boots in Sherborne are really amazing, I needed a prescription after my appointment and Sam went in for me, they asked how I was and then bumped me to the front of the queue, they have already said that they will deliver to me any day of the week, there are some advantages about living in a small town!!! 😀

Yet another nice day today, I have been reducing my pain killers but I may have reached the limit for the moment, we will wait and see, it could be the constipation or it could be my liver, or maybe something else!!!! 😀 I will stay on this level for a few days and see what happens, it may just be a hiccup.

I just have to take each day as they come, it could be I have done too much, who knows, what I do know is I won’t let it get to me, think positive about everything. I have both Sam and Laura coming down to me this weekend so it should be good. They will get in some shopping for me for the next week, I hope the weather stays good, its not so warm but it is nice to see the sunshine.

Next post will appear soon 😀😀😀

Monday 19th September 2016

Hi again all, it has been a good few days since I last posted. I have settled back in to my house nicely and have a good routine, it is frustrating though, that I don’t have the energy to walk 5 minutes to Sainsburys to get any shopping, let alone carry it back. The physio has said that it will be at least a year to get that energy back, thats not taking into account the fatigue from PSC, so I have been to look at an electric scooter with a view to getting one to help. I never thought I would be in this situation of “needing or requiring” an electric scooter. I can walk so I shouldn’t need one, the trouble is I can do the walking to get there, but I cant always do anything when I do get there, let alone get back, it does make me feel a bit of a fraud but what else can I do?

The girls have now booked a short break for us in Herefordshire for half term so I am looking forward to that and we are looking at possibly going to a Christmas market in Bruges just before Christmas. The city itself looks fabulous, we are taking the car and scooter and going to go through the tunnel, something Sam and Laura haven’t done before. I think it will be a great few days immediately before Christmas, markets, looking around the city, what a treat!!!! 😀

I have said this before but I do have a great GP, I have just moved home so I need to see my GP to go through what has been happening, Sam would like to come with me but her time is limited being a teacher, on Wednesday when my GP is in, she can only make 11.30, I spoke to the GP this morning to see if it was possible and she immediately said yes we will organise that, so 11,30 will be fine, no hesitation she was going to organise it, I wonder how many other GP’s would do that?

I am either very lucky with my medical and support workers or they are just different from the picture that some people paint, either way I am grateful for their help. The rest of today I have been reading and dozing, trying hard to recharge my batteries, not sure if I take AAA or AA at the moment but they are re-charging 😀😀!!!

Look out for the next post……………………

Tuesday 13th September 2016

Hi again all, London may be getting temperatures of 31 today with lovely sunshine but here in Dorset it is warm but we are having a thunderstorm with torrential rain 😀 I suppose we can’t all have the same sunny weather!!

Yesterday was warm but great to dry washing, it is September I suppose, it should be much cooler than this. I have a relaxing day yesterday, once the washing was done and hung out, I spent the day reading or watching TV, I didn’t have the energy to do anything else!! That is my problem at the moment, energy!!!! I don’t have very much, I can walk so far and be OK, but if I walk any further I am shattered for the next couple of days, the girls are thinking about getting me an electric scooter for when I want to walk off road and it is difficult for them to push the ordinary wheel chair. I do want to make the most of every day, and even if I can’t walk then I can get in to the countryside on a scooter, thats not easy for me as I have always been so independent and have enjoyed going for walks.

A short while ago I would never have entertained getting an electric scooter, but now it seems like it will be the only way to enjoy things. Sam is back at work now, but the three of us are looking at trying to get away for a long weekend or even a few days at half term.

I have the physio coming today to help with my shoulder, it is nearly back to normal but there are certain positions that are still very difficult. This thunderstorm is still rumbling on, its been about half an hour now, but at least the rain appears to have stopped!!

I am still managing to reduce my opiates and not take any back up pain relief, I am pleased about that, the opiates do cause constipation, but that is difficult to control, to makes life uncomfortable. I’m sure there are people reading this blog that can emphasise with that, it is one of the side effects of opiate pain killers. Hopefully I will soon be driving again, get the pain killers reduced, my tiredness reduces and I will be able to drive, I do miss that independence of jumping in to the car to go where I want to, just to go and see friends or do some shopping, but never mind I will soon be there!!! Keeping weight on is another problem I am having, I have a good appetite but instead of putting weight on I am still losing it, apparently that is the cancer that is taking the goodness, or so I am told, BUT I will beat it and eat so much that the cancer will have had enough and I get to put on weight!!!! 😀

The physio was pleased with the progress with my shoulder so all go there, we chatted about energy or lack of it and she has suggested that I walk for 5 mins twice a day 3 days a week, I need to walk to get my energy back but that could take a year or more. I mentioned about an electric scooter and she thought it was a great idea, make the most of the energy that I have got, so being able to “drive” to the shops and then shop would be much better, all in all a good day.

Look aout for the next post, I feel better now, so hopefully I can put something up every couple of days 😀😀

Friday 9th September 2016

We do seem to be blessed with some lovely weather at the moment, but I believe this is set to change soon. I am due to have some physiotherapy on my shoulder soon but at the moment it is improving nicely from day to day. My pain killers are coming down now which I am pleased about, I seem to be able to reduce them weekly currently, so I hope it continues.

My energy levels are still very low but I am trying to improve these by doing some walking, so lets see how we go, my positivity will get me there but I do have to be careful and not overdo things 😀 I hope that the weather stays nice, I need to get out. the Weldmar Hospice trust have their Fete this Saturday so I hope the weather is good for that, I will be going to enjoy the day. They need to raise so much money a day to survive and they do a fantastic job here in Dorset, I can vouch for that!!!!

As predicted the weather has now changed a bit, dark and overcast here in Dorset, it feels a bit cooler too. Looks like Saturday is going to be wet, which is a shame as the Weldmar Hospice Fete is on that day, but it may clear a bit early afternoon, I hope so for them. I had a few more Summer photos to add below

Sunday 4th September 2016

Hi all, the weather down her is not so nice today, it as been raining and it is a bit cooler. I thought everything was going in the right direction until I received a phone call late yesterday afternoon saying that my CRP was raised again!!!!!! So, instead of being discharged from “hospital at home” yesterday as was hoped for, they were back in this morning taking OBS and are back again tomorrow to take a blood test 😱. If the CRP is raised again, they have to decide if it is my liver or my shoulder infection, it just doesn’t seem to stop, one day maybe!!!! My shoulder has been more painful since seeing the doctor last Thursday and manipulating it, maybe it has disturbed something, if it has it is no bad thing as I just want to get this sorted for good.

I had the blood results back today and the CRP has gone down again!!!!!!!!!