Hi all
I received some vg advice when I was first diagnosed in December and during my treatment from a number of members, and was appreciative.
One thing I have learned is that we are all different and therefore one person's experience may not be the same for others, although I have found this forum very useful.
I was diagnosed in December (aged 59) following the appearance of tumours in my neck which I thought were swollen glands. The pet scan located 3 primaries on the base of my tongue - hpv positive-but in Belfast the response seems to be a tonsillectomy, which took place on 11th January. I commenced treatment on 4th February; 30 sessions of radiotherapy (high dosage on mouth, lower on neck) and 6 full days of chemotherapy (cisplatin).
I rang the bell on 18th March and found the next 6/7 weeks tough. The medics were great as this was during the omicron wave of covid; our wonderful nhs staff. I managed to avoid the feeding tube ( unlike Stanley Tucci who had same cancer and treatment but has made a full recovery) primarily due to my supportive partner; it must be hard for people who live on their own. Beetroot smoothies are highly recommended to deal with the acute constipation which appears to be a regular side effect of treatment/morphine.I managed to cycle to all my radiotherapy sessions but was driven to the chemo sessions.
I resumed parkrun on last Saturday of April and enjoyed support from the 5K your way group. As noted earlier, we're all different but I highly recommend resuming exercise ASAP after treatment.
I had a pet scan on 17th June and on 27th June my consultant informed me I had a 'complete metabolic response to treatment '. I have been given the gift of life and will cherish it. I have personal faith in God and again recognising that we are different, handing myself over to the medics and God was a great comfort to me. I have good friends who are atheist but recognised the comfort my belief brought me so simply sharing my story.
I am off the 'sloppy ' diet, have reduced morphine dosage to 2 longtec per day and am running and swimming regularly. I still have limited taste and a dry mouth but it's manageable and I plan a phased return to work from 1st August. I apply petroleum cream to my neck morning and evening and the skin remains tender; however hope to get a holiday later this year and look forward to a pint in 3 or 4 weeks.
The purpose of this post is to thank the contributors, especially the ones who replied to me, and to offer hope to those people on the journey. I still have distance to travel but will be happy to answer any queries from other members of the club we didn't want to join.
Always great to see posts like this; invaluable to the comunity, especially to people at the start of their journey.
Thanks, and all the best for your ongoing recovery.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
The beetroot smoothies sound a good idea
My wife got it into her head that beetroot juice was the answer to everything so I was force fed "Beet It" from Tescos for ages, luckily I quite enjoyed it.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
I had a pet scan on 17th June and on 27th June my consultant informed me I had a 'complete metabolic response to treatment '. I have been given the gift of life and will cherish it.
Thanks for such a lovely post. I remember you posting at the beginning about the need for a tonsillectomy. I’m so pleased you are through all this so well in body and mind. I tell everybody that we are all different but most of us make a good recovery.
It changes us but it’s a change to cherish as you say.
Good luck PD. Keep on keeping on. Life will continue to get better.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Hazel - going okay so far. I got over the nausea and stopped the anti-sickness tablet on Sunday.
Taste is getting more 'bland' and I expect everything will just taste exactly the same by next week. I've noticed I now prefer coffee to tea - it's a strange thing this treatment!
Hope you're enjoying Wales in the sun 
Helen x
