The good news is …

..I am feeling much better than I was prior to yesterday, because of my morning visit from Louise, my new Palliative Care Key Worker. Following an assessment of my current pain levels, Louise increased my pain killing drugs and prescribed Oramorph which Colin collected from the GP in the afternoon. This has already made a difference and although they knock me out somewhat, I was able to sit and enjoy a meal with Colin last night, in much more comfort. To be honest I think I have been putting up with more pain than is necessary. I don’t like to make too much fuss and I was thinking that pain is just part and parcel of what you need to put up with when you have chemo, I also worry about taking too many drugs, but when you think about it, it’s a bit late for that really as I already take an enormous amount of medication anyway taking a few more, with the result being better pain relief is a no brainier really. Louise was very helpful and she informed me that I can apparently access all sorts of free therapies including reiki, reflexology and massage, whilst I am receiving treatment. The sad thing is I need to go to the hospice for these. I was also a little distressed to read the Palliative Care leaflet that states it is for people with cancer and other life limiting diseases. I reminded Louise that my life was going to be as long as everyone else’s and that I don’t do that dying thing, it really isn’t very solution focused in my humble opinion. I remember visiting the hospice in my professional capacity and thinking it was the one place I would never want to go, not because it wasn’t lovely there and filled with the most caring of staff, but for me I could only see one way out and that was in a box. I do however need to have a rethink and just like I have got to love and appreciate the Macmillan services so must I for palliative care and the hospice. These services are not just for the dying but act as support for hmmm ….(I have to think here) those who might just need it and their families. It really is quite a thing to get my head around especially as in mine I am still a healthy girl in her twenties, unfortunately my body and the mirror often remind me otherwise. If you do however need to make use of any of these services you will be even more grateful for the NHS and the fact that these are readily available to you. In my opinion the nurses who work in this area are very special indeed. Did you know that it is even possible to call on the Palliative Care Team at the weekends and late at night? I really do hope I never need to but it is so good to know they are there.

Well back on a much lighter subject, I am really looking forward to my visit to the spa today. After the original fuss that was made I think the Sanctuary Spa will ensure today is a very special experience for both myself and Kate, I just hope I don’t fall asleep in there. They are providing us with lunch, body massages and complimentary manicures. I am a little embarrassed though after listening to what Kate told them on the phone, honestly she apparently told them that I had met the Prime Minister and that I was a very important person among a host of other things! I shall wear my wig and a pair of dark glasses to hide my embarrassment. Following our spa experience, we might even manage a short wander around John Lewis depending on our energy levels. I am a girl who loves to shop but Kate isn’t so keen, so luckily for her but sadly for me, I probably couldn’t manage more than one store, if that, in my current state of health.. Colin and my dear friends Sue and Angela, in all seriousness, suggested I use a wheelchair, (apparently they have them to borrow in John Lewis) honestly I don’t think I am at that point yet! Still a good time will be had, whatever.

Will let you know how it all went tomorrow.

Don’t work too hard whilst we are busy relaxing!

Deborah x

Oh dear…

…just look at the time, 7.30am already and I have just woken up. Typical when you have someone coming round at 9am. I took a sleeping tablet last night and it seemed to do the trick. I woke just the once to take some additional pain killers but the rest of the time I must have been flat out. My visitor is the palliative nurse who is coming round to help me better manage my pain. Palliative nurses are there to help lots of people with curable as well as incurable diseases which is a bit of a relief. I used to think they were just for the dying and I am not willing to be put in that category.

It was nice to have so many visitors yesterday as it helped distract from the pain in my arms and legs. I saw my parents who brought round more chocolates and a lovely friend Jane who was sometime ago my line manager. I love her calmness and could talk and listen (I hope I do do some of that) to her for hours as we never seem to run out of things to chat about. Then Jem popped in with my lovely grandson who I think is extremely intelligent and is a joy to be around. I just love to see him look through my different Kilner jars filled with interesting objects. And then our best friends Sue and Angela popped in whose company Colin and I always enjoy and we never cease to find something to laugh about together.

Talking of Kilner jars, just before Christmas I became a little bit obsessed by them and must have bought at least thirty. The idea was I was going to fill them with different things personalised to suit the receiver as their Christmas gift. In reality I only made two. One for a crafter filled with lots of crafty bits and pieces like special buttons and threads, fancy stones and other arty embellishments. And one for a good friend, which I called Jaqui’s Emergency Jar. It that contained all the sorts of things you might be looking for but never seem able to find when you need it, like, a pound coin, pencil, tape measure, plaster, needle and thread, memory stick etc you get the drift? My sister and children rudely requested that I didn’t make them one! So most of the rest of the jars adorn the shelves around the walls of my parlour. I love seeing them up there with their pretty labels, lace ribbons and fabric jam cover tops (not that they are coveted in jam but the sort of tops your grandma cut out to decorate the tops of jam jars!) just thinking about Kilner jars fills me with joy and I am open to requests if any one else would like one made especially for them. You probably need a certain type of house to display them in I suppose, these special gifts aren’t meant to be shoved to the back of the cupboard.

Oh well I had better rush and get ready I can’t have a fellow health professional think I live in a tip so I have washed my best Calvin Klein pyjamas especially. It wouldn’t be right for her to turn up and see me in these Primark hole covered ones however comfortable they are.

I must share with you that I am very excited about receiving a new magazine through the post. One reason is, I just love post. Colin and I used to childishly hide behind the door, ducked down below the letter box, to try to be the first to grab the letters (most of which were just bills, but could be a competition win). It always frightened us to death if the postman knocked on the door and we would have to stifle our giggles and stand up suddenly, pretending we were just sweeping the floor or searching for something down there. We can’t do this in our new home as there is a large glass sheet in the front door and the letter box is much lower down. Plus we have grown up a little bit since then. Nowadays I just pull out the cancer card which if I am lucky gets me the best things first, but this I am afraid is wearing a bit thin now. My very generous and kind Aunt in Australia has sent me a subscription to Compers News. So I am going to get back on the competition trail, how exciting is that! I am already dreaming of all my possible wins so you can see why I can’t wait to receive my first edition.

See how much better I am for a real good nights sleep!

Have a great day folks.

Lots of love

Deborah xxx

Ps feeling better seems to equate to an increase in exclamation marks! Sorry Uncle Jack! Xxx

Watch, wait and wonder ….

…again! The consultant yesterday was reluctant to do much more. So I must hang on for another week and see him again next Tuesday. I must admit I do agree with him, although I quickly want to get to my next round of chemo so I can get it all over and done with, but unfortunately my side effects if anything have got worse. Last night was rough, even with the highest dose of pain killers I can take and an extra sleeping tablet I was woken several times either by hot flushes or the severe pain.

The neuropathic pain appears to have got worse, according to the doctor yesterday it is a good sign and demonstrates how well the Velcade has worked but he is reluctant to give me any more at the risk of permanent damage. I must admit I couldn’t put up with this amount of pain for the rest of my life.

The good news is my head is in a better space and I even managed to put on a spot of make up yesterday. I must admit I was quite happy with the results even with my bald head.

Today I think I will try to contact my local Macmillan or Palliative care service to see of they can advice me on pain management other than that I will rest as I want to preserve all my energy for Friday.

Scores on the board today are; Physical Health = 8 Mental Health = 5

I see a bit of blue sky peeping out between the clouds from my position lying here in bed.

If any one is passing feel free to pop in, I shall probably set myself up in the conservatory today.

Have a good day yourselves and don’t work too hard.

Love from Deborah x