Hi, firstly never give up hope even if you only have a little bit. I don't know what CLL is and what health problems you have/ had. I was 57 when diagnosed in July 2016, I had lost a lot of weight and had been a smoker for about 45 years. I wouldn't say I was extremely fit either. I decided against chemotherapy and radiotherapy and had surgery only. The tumour was at the same junction as you and I could barely swallow anything other than water based drinks. Even the ensure milkshakes wouldn't go down. I was diagnosed with T3 N2 M0 staging and had surgery in October 2016. When I was discharged from hospital 12 days later, I'd had a chest infection which was expected hence the 12 days I was 57 kilogrammes, about 8 1/2 stone. It took me a while to recover and apart from random food dumping and a minor issue I am doing fine. Good luck and kind regards Frank.
Thanks for your upbeat reply - I could use a bit of positivity right now. CLL = Chronic Lymphocytic Leukaemia. I'm currently advised that I am most unlikely to be a candidate for surgery. Won't know staging until end of next week(ish). Trying ( and failing ) to stop myself googling options vs outcomes - it's driving me nuts with worry.
So glad to hear you're doing fine - a big boost to my outlook, thank you.
Hi Aitch, yes when you first look at the statistics they are not encouraging to say the least! Then I remembered when I was growing up the news programs would report that the average family had 2.4 children. I've never seen point 4 of a child yet! So I stopped looking at the statistics and looked for other information. I started drinking Juiced green leafy vegetables as apparently it helps to oxygenate at a cellular level and went walking and doing DIY projects to try and be as fit as possible. I've always had a dark sense of humour and I found that helped me. The optimist sees light at the end of the tunnel, the pessimist sees that as the light of the train heading straight for him. The train driver sees 2 idiots on the train tracks. Good luck with the staging, kind regards Frank.
Staying out of the way of Coronavirus is probably a priority just now; it would probably kill you sooner than any cancer will!
You seem to be going through it recently don’t you? Sorry to hear that. It must be hard on you and your family.
Like Frank, I am a survivor following surgery, and in my case some chemo too. I don’t know what the contraindications of CCL are but why not wait till you are staged and you are given your treatment options before you start preparing others for who knows what? A guy I meet up with a couple of times a year was diagnosed with oesophageal cancer about the same time as me but wasn’t a candidate for surgery, he has been on different chemos on and off for over five years. He jokes now that the scans are getting boring as they always stay the same! He enjoys life, food, drink and surprisingly a bit of dancing!
Positivity is a great healer. Keeping away from Dr Google and his statistics is a good idea. As I always say you cannot apply statistics to an individual case. It’s difficult to be positive if you are not naturally a positive person, but staying away from the negative has got to be a good idea.
Waiting for tests and results, meetings and decisions is hard at this point in the journey and given free rein your mind can lead you to think of the worst. Try to be kind to yourself and I know it is difficult at the moment but could you indulge yourself? Watch your favourite film; escape in a good book, go for a walk or a bike ride, paint the front door a startling colour.
I’m not sure I’m being all that helpful. But just know there are people here that will listen and are happy to share your journey, so keep posting. Tell us how you are feeling.
No not a Scouser ( but refered too as "Our H" when visiting the in-laws in Liverpool ).
Thank you so much for the kindness of your reply, yes it was helpful. At the moment every account of somebody overcoming this thing is a comfort.
As you say waiting for tests, results etc. is particularly hard - especially in the current climate where NHS facilities are stretched beyond compare. In my local health board area there is only one hospital currently doing CT scans so the wait is a bit longer than normal. Whilst I completely understand it's the "not knowing" that is currently driving me nuts.
