Taking the plunge

Hi Eastender. Welcome to the community. So sad for you both. You raise very important points and you've obviously given it extensive consideration. I can only speak from personal experience in that acute toxicities are considerable but the longer term ones are not so, considering I have responded well to treatment so far. I didn't have chemo or any nodal spread and my RT was focused more on one side with a smaller amount on the other.

It took me a year to get back to nearly my old self and at two years plus there are improvements still. BUT I can certainly say life was worth living from the start and enjoyable certainly from 12 weeks after treatment ended (earlier than that was a bit of a plod)

I guess you have to weigh up expected quality of life versus longer term survival....That sounds horrid I know.

There are one or two members here who have had extensive treatment and wish they hadn't but equally others who are glad of it.

One of our community champions chris2012 has had a long road to recovery so hopefully he will join in with his wisdom

What are your husband's clinicians saying?

Can I just ask whether you have explored Immunotherapy or trials of some kind? There have been some great responses.

I don't know whether this has helped at all. I hope it has

Good luck with whatever you decide and please keep in touch if you feel you can

All the best

Hi Eastender

Welcome to our small community group sorry you’ve found us in such sad circumstances . I had chemo radiotherapy 35 radiotherapy snd 2 large cisplatin chemos. First 3/6 weeks of recovery hard by week 8 I was improving. The chemo didn’t cause me major issues I was extremely lucky no tinnitus or sickness,

Dani has covered most things please pop on and update when you can. 
You aren’t being harsh like you said you’ve shed your tears now you’re looking for answers  

Hazel x

Hello Beesuit,

Thank you - your reply certainly did help. Neither immunotherapy nor trials has been mentioned to us yet. We'll certainly make sure to raise it when we next see the clinician.

At the last appointment the clinician seemed keen to get everything in place for chemoradiation, as she said it's easier to do this now & avoid delays moving forward should the scans be optimistic, rather than wait until the result of the  scans & then have a delay. She did also add it's no issue to cancel arrangements should my husband decide not to proceed with it or the clinical advice is not to proceed. When we do get the results, we do have some very specific questions to ask. 

 I was so pleased to find this community. It's really invaluable particularly knowing we can be honest & not feel as if any question is too silly. 

Your blog is so helpful, too, particularly your description of your treatment period.

Thanks again for taking the time to respond & I certainly will keep you updated. 

Best wishes

Eastender

Hi Hazel,

Thank you - I've read your blog too as well as Beesuit's & it  really does help to hear about your experiences.

It can be a very lonely place when friends & family don't know what to say (who can blame them!) & this community is really great.

I'll post again when we've had the results. I know I'll really appreciate your thoughts/views.

Eastender x

Hi

No problem anything pops into your head just ask someone will try to try back to you xx 

Good luck. Xx

Good evening Eastender123, i dont really understand all the numbers and letters but it sounds as if there are a few areas that need to be treated. I fully understand your concerns and worries, i had my first mouth cancer in 2008, my second in 2009, and my third in 2010, i had radio and chemo after my first operation. To this day i dont know if they were the same tumour spreading or three different tumours, i should have asked really but did not think at the time. All my operations were big with the second one being the biggest as it involved rebuilding my jaw from a leg from my bone. When it came back the third time i thought for a long time is it worth going through with it as luck was not on my side, so it seemed, being an optimist i went ahead with it and just hoped for the best, thankfully that was my last dealings with head and neck cancer as they finally got on top of it. Ok my quality of life is not as good as I cannot speak due to having my larynx removed during my third operation, also my swallowing is limited so have PEG feeding tube fitted. I know your husband is not having an operation but i had to make similar decisions about survival and quality of life, it was not easy but i can honestly say i have never regretted having the treatment and operations, it just took a bit of time to adjust. I hope this is of some help to you both. Wishing you both all the best for further treatment and a good recovery. Take care.

                                                                      Chris x

Hello Chris,

Thank you so much for taking the time to reply & being so honest. I'm blown away by your resilience & quite humbled to read what you've been through. You're a stronger character than me for sure.

This is why this forum is so important, to hear real life experiences from wonderful people who care enough to help others & provide guidance & support at such a difficult time.

I know I'll be back soon to share the results of the CT & MRI and talk about next steps. Being able to talk about it here really does help.

Thanks again, Chris.

Eastender123 x