Starting treatment

Hi Shazone

T2N1M0 tonsil cancer...finished Chemoradio June 2023

Feeding tube (PEG) is a lifesaver IMO ....it could be essential to his recovery, recovery times are not the same for everyone.....treatment is tough but outcomes are usually very good.

Google should be kept to a minimum....use this forum for guidance....posters on here have been there...done it.

Peter

Hi Shazone, I agree with Peter having a feeding tube, is a real lifesaver, if eating becomes difficult during treatment. I was100% reliant on mine from week 3 and used it for about 10 weeks. It's so important to get the nourishment and water needed, during treatment and recovery afterwards. If he is offered one, I'd recommend he has it.

Ray.

Hi Shazone. I m 5 years post radiotherapy for tonsil cancer my feeding tube was my lifesaver. I would follow consultant s advice. A few do manage but it’s there as an insurance policy. Until you’ve been in a position where you  cant  even sip water it’s hard to explain. Read my blog below it may help. We all react differently irs best to be prepared. 
There new advances in treatment all the time but it’s pretty brutal saying that our type of cancers respond well to treatment. 

hugs Hazel 

Hi. I’ll agree with the others about the feeding tube. Ask if prehab is available at the hospital. Some centres are enlightened enough to offer it. If it is, jump at it. If not then my advice would be for your husband to get as fit as he can. Some people advise putting on some weight. I’m not convinced that’s a particularly good idea unless your husband is underweight to start with. 
Chemo days are long so something to do and a snack for the first one. By the time the second one rolls up he might not be eating much. 
When he has his mask made ask about eyeholes. They make the whole experience less claustrophobic. 
I had eye holes cut in my mine. Some masks come already tailored that way. 
Keep the questions coming. There’s always someone to help. 
Remember. This is curable. It’s doable a day at a time.

Best wishes 

I just reiterate what the other contributors have said - a feeding tube is a must - I’m 3 months out of the treatment your husband is about to have and I’ve just had my tube out. I couldn’t have coped without it. 
Regarding work - I haven’t worked since Sept - just about to go back in 2 weeks. Everyone is different but the treatment knocked me for six. I could have probably gone back part time a month ago - but I got made redundant so I’ve had to look for a new role. I guess it also depends what sort of work your husband does as to whether he will manage to go back sooner. 
I rang the macmillan helpline to get advice on finances - they were very good. 
I also used the 6 free counselling sessions from macmillan - they were fantastic. I started the sessions when I was 2 months post treatment - which was the right time for me. 

Be kind to each other and get lots of rest - it’s tough - but you come out the other side. 

lots of luck 

Rachel 

To be honest, I am 3 weeks since I had the PEG inserted.  Maybe I am lucky but most of the time unless I am using it I don't even realise it is there.  I am also lucky that I have retired, so can't offer advice on that.  Suffice to say everyone is different, but plan on not being able to do significant work for 6 months, but recovery may be much better.  It probably depends a lot on the type of work he does and the ability to retain clients through recovery.  It is a difficult time for both of you and I hope there is a food solution.

Good evening Shazone, i have had PEG since 2010 and have never had any serious issues with it, the first few days CAN be a bit uncomfortable, the actual fitting of the tube only takes about an hour and is normally fitted in the morning or afternoon surgery and most cases you can go back home afterward. The trouble is nobody knows how the treatment will affect our swallowing so the feeding tube is a backup. Your husband's consultant is spot on with the six-month recovery period, again this could be longer, he should be entitled to some sort of benefits during his time off work although I'm not sure how self-employed claim it. I seemed to cope better by taking things a day at a time. Wishing you both all the best during the treatment, take care.

                                                                           Chris x 

Hi, I am self employed so losing income almost overnight was not easy! A colleague recommended that I apply for ESA (Employment Support Allowance). It was easy to apply though I did have to jump through a few hoops at the beginning.  DWP were later very apologetic for making me jump through said hoops! It's not much £s but was something. I started treatment in July but had tonsillectomy and biopsies in June and they back dated payments to then. I had to get Fit Notes from my GP and you just upload them. I finished treatment in September.  I've just been assessed and they upped my money (again back dated it) and have advised that I can continue to claim this until November! I do consultancy work for charities and will most likely go back in Feb or March (after I've had follow up treatment scan). In terms of the feeding tube, I had a PEG inserted. I was totally in my head about it and utterly freaked. As it turned out, I maintained my swallow throughout so didn't use the PEG at all. Would recommend having it though as a safeguard.

If you want any more info about ESA, then do let me know. Happy to help. 

Thanks for this informative post Leslie R , as you say once you get into the system it all becomes straightforward and the money does come in handy for sure. Thanks again.

                                                                             Chris 

Yes he has been recommended and the nurse said out of 100% of patients 80% used it so I know he will go ahead with it even though it seems to be the thing that is scaring him the most.