Calshe

welcome to the forum and sorry to hear of your concerns

although my cancer was not as advances at your partner I guess the treatment is the same and I guess that now two weeks into to treat the impact is starting to show 

loss of taste mainly at this stage

im sending you my blog. I wrote this all the way through my blog, it might help but I’ve also been told it’s  a good read

gammaraygary.wordpress.com/.../

ask whatever you want we are here to help

vatch

Hi CalsheB. I'm sorry to hear about your husband's situation and I can fully understand your worry.

I'm not a doctor, and what I know about tongue cancer is sketchy, but I believe the HPV cancers are generally more treatable and easier to cure, so this might be a good sign. 

You can look up survival rates for most cancers, but there are some things you must bear in mind. By their very nature, they always relate to older forms of treatment. If you think about it, if you count how many people have survived for 5 years after treatment, then every single one of those people was treated at least 5 years ago!  Given that doctors are continually striving to improve their treatments, someone who is treated today can be expected to do better than 5 years ago, but we won't know how much better until another 5 years have passed. 

So, this really means that looking at survival rates for any particular cancer can be a sobering (or downright frightening) experience, which ultimately yields nothing of any value, because it's all out of date anyway.

I think it might be best to take comfort in the words of the consultant, who is aiming for a cure. Assume that this is going to work and there will be no major setbacks. If things don't work out, then there is still hope in clinical trials, or if the NHS listens to the words of Jessa Jowell there may be some completely unexpected experimental treatment available. 

Hi

The cancer staging can be confusing - TNM vs staging. I think my husband’s base of tongue cancer was T2N2M0 but was horrified to see it also written as stage 4!  I believe the HPV cancers respond better to treatment so please hold on to that.

My husband had 6 weeks of radiotherapy with 2 rounds of chemo at the end of 2017 and is still doing well! The treatment was gruelling. We invested in a nutribullet and he made smoothies out of any fruit and veg he could - he was pretty much vegetarian during treatment due to his taste changing plus he could get his smoothies to the right consistency for going down his PEG feeding tube towards the end of his treatment, when his throat became sore. 

He has had a year’s worth of monthly appointments and we are currently down to 2 monthly appointments. His taste buds have returned, he is eating and drinking as usual and back working full time again (after a very slow year of building things up gradually)

it is easy to get bogged down with statistics of survival rates - believe me, anything out of the ordinary and I’m checking google and we have had a couple of scares along the way! Try to have faith in the treatment. My husband was the 5th patient in this area to go through this but they have taken many more in since. 

Good luck, support each other and let others support you too - it’s often harder for the partner in some ways. Be prepared for dark times but know there are others out there who have got through this and there’s a good chance your husband (and you) will too.

Very best wishes xxx