It is just over 3 weeks since my last treatment and this past week has been very up and down. I'll tell why in a moment .... but first I am thinking about my ENT follow-up on Tuesday afternoon. I wonder what the next steps will be and when the follow-up scans will commence? I am thinking about this because although I titled this blog 'recovery', I am only referring to my recovery from RT ..... the emotional recovery and the ongoing though about life after cancer are much bigger considerations.
I had my final meeting with the MDT at Northampton .... as I expected there wasn't much to discuss because my physical path to recovering from treatment is going well 'because I did everything right' (is what I was told). I did talk about how I am receiving comments from people telling me how well I am looking .... and the dichotomy I face - wanting to look good for me, but people looking at me and thinking I am recovered. The team reassured me that NOBODY will ever understand exactly what I have been through, although some people may have experienced similar, the majority of people really have no clue. The team also explained that it will take months for my body to recover. Although I knew this, it was good to hear the words again (not so good to think about the months to recover).
I have started to do some of my 'normal' things ..... but I have quickly realised that just one of these normal things will be enough for me each day. For example, I have picked up my daughter from school two evenings this week and done the clubs run and cooked her tea. This is the most important thing for me to start doing because I miss my daughter when she is at her friends' houses for tea .... and I think (hope) she misses me too. I tried two 'normal' things yesterday and it was too much: I took the car for cleaning before doing a supermarket shop (and was picking up my daughter after school). Despite having managed a supermarket shop with my husband, I felt it was difficult. Half way around Waitrose (yes, do out the Facebook page 'overheard in Waitrose' ..... I was a supermarket snob yesterday having figured that if I was going to do it I would have to do the best available!!) my thoughts were telling me 'this is too hard' .... whether or not it is too hard I don't know? But this is what my brain said and as I exited the shop tears welled up. Of course I managed to load up the car, unload at the other end and pack away. I managed to pick up my daughter and I managed to cook her tea. I managed to stay awake until midnight with my blankets wrapped around me watching Friday night rubbish TV.
I have concluded that my thought processes were the source of my emotional response. Physically I managed, but my thought processes are clearly compromised at the moment. I think that this is probably due to a lack of confidence on the one hand and also due to it being REALLY difficult to know how much stress I should put my body under to recover from the RT (whilst also trying to not set off a MS relapse!). I need to find some thought responses to over-ride any similar negative thoughts - just as well my GP has referred me for some 1:1 CBT.
In the period since my last blog I have started a little telephone counselling too .... it is just giving me space to talk and think, and someone to help me reflect on what has happened and how I am feeling and coping. I think this is a useful at the moment too .... I am talking with her about some of the impacts on and responses of my family. I am hopeful that if I work through things between sessions this will help.
I did not exercise this week as I have felt more tired, and my mood has been lower than in the past couple of weeks. I don't know whether I over-did things last week or whether my body is having a big recovery week this week .... either way I am not too stressed about it and will do things when I feel up to doing them.
Og, before I forget to include, the local Macmillan Support Coordinator told me about a programme called Odyssey .... I am going to investigate this further with my GP to see whether I can get a referral to this service.
And so, at this point I will update on my ongoing physical side effects:
Inside of my mouth - still ulcerated (confirmed huge ulcers by the MDT, who said I should be reporting higher pain levels than I am based on the ulcers). Maybe the numbness from my surgery back in January is keeping some of the sensations at bay. I am still using Gelclair, have switched back to my own non-alcoholic mouthwash, continue on the flavourless Oranurse toothpaste (my regular minty did tingle a little too much). My tongue is still raw in the treatment side and my taste buds still aren't responding.
My neck and ear - still pinker than the non-treated side and the odd skin 'ulcer' pops up and then goes down. My ear still feels tight and sore where the split skin behind my ear continue to heal. Overall this healing is going really well and I have attached a pic (it was a selfie though so doesn't show very much really). I am still using E45 cream on the pink areas and applying Factor 50 sunscreen beneath any make-up.
My hair patch hasn't started to regrow yet ... and my hair is really really dry .... come back hairdresser I am ready for you now. Banish away my greys and reapply my fake auburn!
Pain relief ..... currently paracetamol x 3 each day and 2 x ibuprofen each evening. My MDT explained why my mouth and throat aches more each evening .... it is purely because during the day I have used my mouth to talk and my throat to swallow. I am so glad I asked why I needed Ibuprofen come the evening .... once I have an explanation it feels easier to cope with.
I'm about ready to go and get showered and dressed for the day now .... but I wanted to sign off by saying that I am really looking forward to this coming Thursday when we are going to see Prince in concert. One off my bucket list. The next one to think about arranging (for next year) is a riding holiday in the USA!
I'll be back here soon xx
