Hi all,
I firstly just wanted to thank this community and all the amazing people on it, who take the time to share their journey’s and all the wonderful people that add positive comments and experiences. This site has certainly been a tremendous help in my own personal journey.
I previously posted a couple of months ago on this forum, titled ‘Recent Mouth Cancer Diagnosis’. Briefly, a tumour was found in the corner of my mouth and classed T2. I had surgery to remove and because it had affected 4 of 23 lymph nodes they were removed. I have also had 30 sessions of Radiotherapy over 6 weeks. This ended 4 weeks ago. Side effects included a brief dry mouth, loss of taste, and a very sore neck which has now healed. Tongue is still very sore on the affected side. Taste has slightly improved and am still on protein shakes and have been told to try a piece of soft food every day, I was lucky, that I was mostly able to swallow throughout, meaning I had my PEG tube removed a couple of weeks ago.
I guess now comes the worry of the results. It’s the waiting that I find the worst....
I have firstly, an appointment with the Oncologist at the start of October then with my consultant at the end of October. I assume, in between these appointments. I will have an MRI & CT scan to be booked in, but I have not really been advised which order everything goes in. Does anyone know what will be discussed with the Oncologist as no scans booked of as yet?
As I mentioned in my previous post, I had an unpleasant experience with my consultant during my last appointment, where I found him to be rude and lacking any empathy. Unfortunately, this 1 negative experience is overshadowing all the other positives so much it is affecting my sleep and daytime thoughts to the point where I keep thinking I genuinely do not want to see him again and am fearing the worst. I know whichever consultant I see; it will not change the outcome; I just cannot get the last experience out of my head 
I do not know whether I can change the consultant or not. It’s affecting my positivity in the recovery journey.
I cannot get the worry out of my mind that 4 lymph nodes out of 23 have been affected. Has anyone else had lymph nodes affected?
My tongue continues to sting which causes me a lot of worry, and just general pains every now and then within my mouth or neck. I guess this is normal, because of Radiotherapy and surgery. Does anyone else experience this?
Again, would like to thank everyone on here for the support. I tend to avoid reading or ‘looking up’ on other sites and stick to the Macmillan family and apologies for the 'War & Peace' post 
Paul xx
Hi Paul. Welcome to life after treatment
it’s a slow plod and we all move at our own pace. It’s a marathon not a sprint.
Your first check up will be just that, just to see how you are doing.
PET/CT is the usual post treatment scan though some places are still using MRI. It’s what they have access to and capacity for. My PET was at 16 weeks. Some centres are still doing them At 12 but are moving g away from early scans as we are still healing and inflammation can show up as a hot spot.
I got away without any node involvement but that’s uncommon. Most folk present with cancer in the lymph nodes so try not to worry. Hazel ( RadioactiveRaz had 7 nodes affected and she has passed her 5 years.
Yiu are very very early in your recovery from a huge assault on your mouth that has done a lot of damage. It will take time.
I’m 4 plus years clear and still get bouts of burning tongue. That’s not to say you will but at this stage if your recovery it’s nothing to be frightened of.
Be kind to yourself and don’t despair. You will get there. This time next year it will all be a distant memory and you will be so so much better
Best of luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hazel....you have excelled yourself with your typos today 
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Paul, im just picking up on a couple of points about your previous encounters with your consultant as i do remember in your previous post, you have every right to ask for a change of consultants, i had a great consultant but some of his understudies where not to my liking so i told the senior head and neck nurse i only want to be seen by my consultant. I know there were 3 consultants in the area i live ( Medway Towns) so i expect its similar to where you are where you could see one of the others as its causing you a lot of stress which is something you dont need at this point of time, so please get this issue sorted so you can move on. I had quite a few lymph nodes removed because they looked a bit sinister, it gives them clearer margins to remove the ones near the cancer, i cannot remember how many but it was more than 4 and it did not affect my recovery too much. Im afraid we all get aches and pains during and after recovery as the body has been through a lot in a short space of time. I hope you manage to sort your issues out so you are in the right frame of mind for your treatment etc. Wishing you all the best, take care.
Chris
Its sometimes not easy but its worth it !
d I just worry so much that 'it' has spread to another area or got worse. Did/Has anyone else had these thoughts concerns?
Early failure is very rare but what you’re feeling is normal. It does get better as you realise you might survive after all
Read this again
www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
