The Homecoming

Hi , I hope you have managed to stop thinking and have a rest. If not I remembered the link below that helped me. I know you did the HOPE course a while ago so you may be familiar with it but it may have slipped your mind where as my course was only a few weeks ago while wrestling with the Japan or not Japan question. Anyway the link and picture of the learning zone area are below for you or anyone else who fancies a browse. I think you have to be logged in to Macmillan to get the link to work. 

https://learnzone.org.uk/courses/course.php?id=295

Best wishes for a restful evening. 

Hi KTatHome

I never did the hope course but rather wish I had. I will check out those links. Thank you 

xx

I could have sworn that you had, I hope the audio makes sense for you.

The breathing exercise is something they recommend to practice daily/often, it can be a go to at times of panic when you feel your head is about to be over whelmed, or just a daily exercise to set you up for the day perhaps when planning what you want to do for the day that might form part of your three good things at the end of the day. You might plan to do something nice with your family for an hour, sort out your sock draw! attempt one meditation session, make a post in three good things, etc etc and reward yourself with a glass of wine, a cuddle with the dog, a audio book listen, an on line purchase etc . Sometimes the actual planned activity can sound more like the reward, as sometimes it’s a big deal to feel well enough to for instance read a book, other times reading a book or listening to one might be the reward for sorting through a job you’ve been putting off. ( I’m remembering my Mum here as she was an excellent director of tasks, she would reward herself when I completed the gardening task she could no longer do but asked me to do. She was right though as it wouldn’t have got done if she hadn’t of asked)

The meditation is a starter meditation concentrating on a raisin, it’s a bad thing I think for melanoma patients because of what it resembles but you can substitute one of those chocolate minstrels or anything. You might have your own go to app for meditation like headspace that does a body meditation, noticing and feeling tension and relaxation in body parts. I found thinking of somethin* else and not me easier. 

The guided imagery of a pleasant walk I found was nice to do before bed but when my mind was active, I could distract that activeness into imagination, a replacement for an actual walk, giving the feeling of a nice relaxing one where you just sit down and relax after it and hopefully fall asleep.

have a lovely day enjoying being at home.

* I posted this in Who Are We first, replying to Norberry’s kind inquiry. I thought I’d repost here to avoid hijacking Who Are We as it’s an important discussion. I hope that’s ok. 

here goes...

Good afternoon!

I am indeed at home and having a brilliant time surrounded by love. I am dressed for the first time in the best part of a. week. I’m slightly stronger than yesterday, able to move around the house a little bit more and look after myself just that bit better. I was able to sit up long enough to start a new jigsaw puzzle with my little one this morning.

I had some very nasty breakthrough pain over the night but luckily my big girl found me and was able to rescue me from diving down the pain hole before I got to the bottom of it. The other one I had to drag myself from. Does anyone else here know what I mean about the pain hole and having to get yourself out of it?

I had some very good consultations with my healthcare professionals yesterday. My amazing GP gave me a full 45 minutes on the telephone. We’ve sorted out how to secure a supply of the liquid pain relief over the next few days. I’m really happy that I won’t be running out.  He says it will realistically be a week before we can expect to see a significant shift in the pain. Somehow knowing that is both irksome and cheering. I can stop myself becoming downhearted if I don’t see immediate improvement but I can also look forward to some change and have a realistic deadline. The  hospice organised to send over a shower stool so that I can sit down when I have a shower. That’s already arrived.

I also made contact with my oncologist at the trials unit. The events that led up to my hospitalisation have got to be reported as a “serious adverse event”. It’s quite interesting. I was on the second of three sub parts of a phase 1 trial looking into a drug that interferes with the DNA repair. My phase looked at efficacy- does it work?  The next sub phase of the trial is to introduce radiotherapy alongside the drug, the theory being that the trial drug makes tumours more susceptible to radiotherapy. So for me to have had such a rapid and serious radiotherapy flareup immediately after taking the trial drug does raise questions. I doubt I shall be privy to any answers, but the thought that I might prevent this happening to someone else is quite cheering.

Does this count as taking it easy? Probably not. It didn’t require any movement but of course it required a lot of thinking and quite a lot of emotional input. I feel safer for having done all this and I feel ready to face what is coming up and put some backbone into the recovery phase. My cleaning lady is coming tomorrow and the gardener will be here at the weekend to do the grass (hark at Lady Muck. It’s what I choose to spend my PIP on). Life is beginning to take some of its normal shape back on, thank goodness.

I hope you all are finding some joy in this day. It’s always in there somewhere if we can just look 

xxx

Hi Daloni

The pain hole? I'm not sure if it's the same as mine, but if you mean breakthrough pain, wow I had many many nights of that before I happened to mention it when seeing the doctor for something else and it was only when she mentioned breakthrough pain that the penny dropped and it all made sense. Then there's the excruciating pain that builds up quite quickly when I'm digging a trench to put decking planks in or I'm screwing them into place and eventually it feels like my back is going to break. So I sit down for a while and I can feel the pain slowly draining away.

No, you're not taking it easy, Lady Muck ha ha. 

Take care and keep safe Daloni

Tvman xx

I dont wish to blaspheme daloni but you must feel Lazarus like today in comparison to the last few days. What a treat to have real plans for dealing with your pain and how much better to wake up knowing where you are.

Your house guests will also be pleased that the possibility of hoovering and other such duties are to be dealt with by a professional!

I can see a big slice of joy in your coming days.

Xxx

Hi 

Pleased to see you are back at home and hopefully taking it easy today and being spoilt ..  Sadly the weather down here is cloudy grey and showers but hoping it's better in your neck of the woods xx  

Hi Gang

Well, that didn’t last long. I’m back in hospital again. Same side room, same ward, same night nurse, same welcome with tea and ginger nuts.

I came in around 3 am after a night of pain. My poor big girl had to wake me from the hellhole. Apparently I was shouting about there being no first president and strangling the cat. It took about an hour for me to get up to the surface and realise I needed to do something. We were already at the top of the painkiller dosage by the time I called 111.

We did at least managed to drive ourselves in this time. Or rather my daughter drive me in.We are still not on top of the pain properly speaking now. But I’m in the right place, and I hope to see the palliative care team later.

I’m obviously very disappointed. The rain has stopped, the Sun has come out, so where should I be? In the garden? With a cup of tea? No. In a hospital bed. Poo!

I’m sorry to hear about your pain , but glad things are starting to settle and you are being looked after nicely. I hope your same side room has the best view in the house or at least a nice picture that doesn’t put thoughts of presidents and cats in your head, but of more serene things. 

Sending virtual hugs, I’m sure you will have many today.

Hi I'm relieved to hear you are in the right place for them to sort out the pain for you. That's good your daughter could drive you in, it saves time and hassle! I'm hoping by now, they've knocked you out with something (not a hammer) so you get a pain free sleep! What must you have been thinking when you went to bed..Presidents & cats huh! Well, now that you are a dog person, I can't see you strangling a dog!  

Of course you and your girls will be disappointed but this time hopefully they will properly sort out this pain! Everyone always says, "in this day and age there's no need for anyone to be in pain, just ask for help"! Well I for one and I'm sure Tvman for another & I'm sure a few more, would like to strangle the person who came up with that gem!

The sun is shining here and there's a blue sky, lovely when you are inside looking out but freezing outside so not a day to sit in the garden! You snuggle up and get some sleep and here's the second of the many (((hugs))) you'll be getting today! Take Care as always!