I am going to try to keep this brief (it's 5.30 in the morning).
My biggest side effect is an ear that is now blocked and seeping clear fluid from the ear canal. This has been going on since my last post and is definitely not clearing up by itself. The mac nurse took a swab today and we await results before my last treatment on Thursday.
The skin behind my eat is decidedly split and requires daily cleansing very gently with boiled, aired water. My gentle mum is doing this.
My facial skin I now looking burnt and mum has started to dab on a little Nu Gel to prevent blisters forming .... They are definitely bubbling under the skin and so far we seem to have kept them at bay.
We spent a long weekend at Butlins and it was lovely. I took things very easy with no morning rushing and early bed times .... But I still enjoyed some fun shows (Dick & Dom were fab) and loved seeing my daughter have fun with her friends.
The sun has been shining and so I am being really careful about wearing a scarf to cover the side of my face. If this summer turns out to be a good one then I am going to need more lightweight scarves.
My taste officially disappeared TOTALLY today. Previously I have had the ability to pick up some tastes so this total loss was very disappointing earlier. We were at the hospital very early (husband also had an appointment) and we discovered a new cafe serving lovely food .... There was a tray of lasagne and all I could do was imagine the taste of one of my favourite meals ..... Guess what I ended up eating? Yes, you got it ..... lovely egg sandwich ..... One of my usual protein meals (other variations include tuna or cheese sandwiches ..... And cottage pie or breaded fish at tea time). I have lost almost another kg this week which I am happy about. As long as I am eating nutritious food I will do okay,I know because there is no danger of me losing too much weight.
What I am looking forward to now?
- Finishing these daily 48 mile round trips!
- Seeing Derren Brown on Thursday night.
- Going to Isle of Skye at the end of August (we have just rebooked the cottage we visited there last year for my husbands (big and important) birthday but it rained for the whole week so we have booked better weather for this time.
- hopefully going to the Amalfi Coast end of September (just need to get this booked)
- selling lots of outgrown little girls clothes on eBay!
- making some clothes for me and my daughter (a la Great British Sewing Bee!)
- arranging a late Spring afternoon tea in the garden and inviting all our lovely friends who have helped us out so much these past few months (we may even ask for charitable donations for Macmillan)
- not working or even thinking about working for the rest of 2014 .....
- just focussing on me (recover physically, identify any assistance I might need emotionally) and then extending this to finding my future which maintains a happy and healthy family life for as long as may be ..... A day, a week, a month at a time ..... Never feeling complacent about my health, but also never surrendering or giving up on the people and things I love.
..... There that was short wasn't it ? NOT!!
FormerMember
Hello Bron
I've been reading your blog since the beginning but not commented before. At first I thought, 'how can this lady keep up this level of detail throughout the treatment?' but I didn't realise then what a resilient person you are. I supported a friend through treatment for laryngeal cancer a couple of years ago so I had some idea of what you would be going through, and I can assure you that towards the end of her treatment she was in no fit state to get up at 5.30 in the morning and be writing coherently about anything, and she didn't have MS to contend with as well. I so admire you for your sane and measured approach to what must be a very difficult experience, and my admiration has only increased over the weeks that I've been following you. And now you are nearly there! I'm so glad you managed to get to Butlins and to enjoy it at your own pace, and that you have arranged so many good things over the summer to look forward to - again in that same practical way of yours. I really take my hat off to you, and will be following your continuing journey as long as you care to write about it.
