Day 43 – A bit nervous about speaking out too soon but…..

…I think the feeling of nausea may have almost gone or at least been drastically reduced. On Wednesday I had a home visit from Louise, my lovely Palliative Care Nurse. She listened and then looked carefully at all my medication. Embarrassingly, I threw up whilst she was there. Louise was determined that we would get on top of the sickness. After a discussion with my specialist myeloma nurse and the hospice doctor, Louise rang back in the afternoon with a new medication regime. I was to try taking Levomepromizine 6mg x1, and 1mg of Lorazepam under the tongue at night. Well it seemed to do the trick and knocked me out for the whole night. So yesterday (Thursday) was a much better day. I was able to eat and drink small amounts and felt much brighter in mood. It made such a difference. I still feel mildly nauseous but nothing like I did and I can take up to 4mg of Lorazepam during the day so I always have that as a back up.

I made it downstairs yesterday and with Colin’s help I managed a short stroll around the garden. Today I may go for a drive out in the motorhome. I must however be careful not to over do it. My body is still very week and I can’t do very much before I am completely exhausted. Thank goodness for the wheelchair borrowed from the Red Cross.

Yesterday I had a lovely visit from my old friend and colleague Jane. It is all very exciting as she is moving to Guernsey next week to start a new job. I shall really miss her but both Colin and I are excited to follow her journey and we hope to visit her out there sometime. Jane is one of the most generous and genuinely thoughtful people I know. It wasn’t until she left that we found the bags of Waitrose treats that she had left behind for us. All kindly hand picked tasty morsels aimed at trying to encourage my appetite. But it’s not just her generous gifts it’s her thoughtful words and kind gestures that make her so special. Both Colin and I will really miss her but are so excited about the adventures she has ahead.

I must also acknowledge all the hard work and kindness my mum shows. Nothing is too much trouble for her and she does all our shopping and ironing at the moment. Anything she can think of to make our lives easier she does. Last week she bought all sorts of natural remedies to try to reduce my nausea, from specially scented candles, Joss sticks, mints and herbal teas.

I am very lucky to have such a caring family and good friends.

Perhaps I have turned a corner? Oh please do let that be so. I feel that HOPE and my positive outlook is returning.

Thank you all for your continuous support and comments. They really do make the difference.

Now I have some competition entries to post. Fingers crossed I could be winning all matter of crazy prizes.

Have a great Bank Holiday weekend my Guardian Angels

Deborah xxxxxx

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