Slightly More Cheerful Update Than Last Time

Hi all,

I am now 10 1/2 weeks post treatment and whilst there are good and bad days making progress. Interesting to read your stories too and see comparison in them.

I haven't used my PEG since 1st June, which for me is definitely something to celebrate. I was completely dependent on it for 3-4 weeks post treatment, so have grown to hate it less but would prefer to have it gone. I don't really notice it anymore, but bending lots to play stick with the dog, gardening and carrying my granddaughter are uncomfortable with it - and I want to do them all. My weight went a bit crazy for a couple of weeks but hopefully I have stabilised enough. I've been told I have to go 6 weeks without it to book having it removed. 

I am getting more adventurous with food, which is a godsend as I was climbing the wall over this. I am such a foodie not eating / not finding things to eat has been one of the hardest parts. Also trying to stick to the mission of maintaining weight to have the PEG removed is tricky when not much grabs you. Yes, I still top up with Ensure, but let's be honest who actually looks forward to one? I've been knocking down the smoked salmon - soft & I can taste it and quite a bit of fish recently (don't eat meat). We went for a pub lunch for the first time this weekend and was struggling for choices, so explained the situation and had a kids meal!! It was like nectar!! Still avoiding salt, pepper and spices so as not to irritate my throat - still have some swelling, now mostly at the base of my tonsil and area where RT was focused. I managed a flattened lemonade at the pub. Have seen the subject of alcohol in another thread. Not much has been said on that apart from not during treatment and avoid spirits as they will dry the throat more. Am waiting to come off pain relief though as they all say no alcohol. Gradually dropping that back down. Was up to two patches, paracetamol, top ups of oramorph and gargling asprin. 

I am slowly bringing myself out of shielding. I made it to my granddaughter's 2nd birthday party, which was outside and I kept those I spoke to to a small group. We have visited some old uni friends for a couple of hours (I did hug her for 10 minutes when we got there as we both sobbed, I haven't seen them since I told them the news when I was awaiting biopsy results and was stood half way down their garden at the time). A week later I have even made it to the hairdressers (which made me cry again out of huge gratitude, she is recovering from surgery and awaiting biopsy results for breast cancer!!) and am now blonde, which I haven't been for 25 years. I went out to hunt the Gruffalo with my granddaughter too. After all this I have been pretty exhausted since! Just about coming back up now a week later. We managed to take the puppy out for a canal side walk on Saturday, which resulted in the pub lunch. The big one is in 2 week's time, when my brother, dad & their families come to see us. Not seen any of them since August as we were protecting my dad with my sister in law and me working in schools, then protecting me since December. We have my dad & step mum's silver wedding, my dad's 80th & brother's 50th to celebrate. Looking forward to that one. 

My main time for dry mouth is when I wake up, a good swill & swallow sorts it. I am very grateful that I can now swallow better, so I can take the dispersible paracetamol quickly, and the Ensure to be honest. I love water, but am now wanting to try more as my taste buds are coming back a bit and craving some flavour. So many drinks are fizzy or fruity though and both tend to sting. I'm avoiding milky smoothies until off the Ensure, only so much milk induced mucous a girl can handle! 

Back at hospital on 30th and awaiting the date for my PET CT scan. Other than that I am slowly trying to build my strength with an aim of going back to work for a couple of days in July, but with a proper phased return in September. Hope to get down to paracetamol only soon so I can drive again. 

Loving my morning dog walks, but now that my husband's achilleas is better he keeps taking her out before I wake, so I need to go to battle there. She's mine after all, and he needs to learn to stop wrapping me in cotton wool. I need to do things for my sanity and recovery I keep telling him and he just says - rest!! Mostly good days, but the odd one where I have just wept for a couple of hours, I think its just part of the come-down. Decided to ask for some counselling as I carried the baggage of mum's cancer with me for 25 years, not prepared to let it do the same to me this time. 

Hope you're all managing to enjoy the warm weather, if not fully the sunshine now are are in the factor 50 , hats & scarves club. When I finally get around to having a drink drink I will hold it high and toast you all to say thanks for the support.

Send you another update soon!

Take care all,

Ronnie xx