Tonsil cancer. A positive day!

Hi Duskie. Great to have some good news after the anxieties you’ve both been through. His condition sounds very similar to mine. I had tonsillar cancer with spread to one lymph node. In answer to your question, no I never had a feeding tube during RT. They kept the option open, but in the end I was lucky that I managed to keep eating during the whole process, although for a few weeks after chemoradiation had ended I was on pretty much a totally liquidised diet. However, from friends in here it seems a fairly standard procedure to have a feeding tube fitted and is likely to be just precautionary, so don’t read too much into it. You’ll be glad when treatment has started as you can start the countdown to recovery. It will come but you’ll need to be patient! I’m sending you both positive thoughts and best wishes. M

Hi Markel, sorry only just seen your response. I hope you don't mind me contacting you directly, it's just as you say, you're and my husbands conditions sound so similar. And reading your blog has helped me and our daughter tremendously! 

So he had his Peg fitted, and yet again another infection, seems everything he has done he gets an infection. Not sure why this is, low immunity maybe?

Chemo and radio starts on Monday, 6 hours of chemo every Monday and radio everyday for 6 weeks. 

The care team explained that he should feel really unwell 3 weeks into treatment but much better 6 to 8 weeks after, how did you find it? I know everyone is different x

Hi Duskie. No, of course don’t mind. I’m happy if I can be of some help.

This time last year I was in week 2 of treatment and feeling pretty well. In fact I never felt really sick but just had increasing soreness as the cumulative effects of RT gradually ramped up, but to be honest that never became really hard until until 2 weeks after treatment had ended, I was very lucky not to get any tiredness and tried to stay as active as possible throughout. (I am a very boring advocate for doing as much exercise and getting outdoors as much as you can during and after treatment as I’m convinced it helps immeasurably both mentally and with your ability to to heal.)  

So, to answer your question, during Week 1 I noticed very little difference, but by week 3 I was certainly aware of changes in my mouth and throat, and my sense of taste was disappearing fast, but I was still eating ok. Incidentally, my chemo was switched to Carboplatin after week 1, due to increased tinnitus, and the side effects were minimal. 

As your team has suggested, I felt quite a lot better around 6-8 weeks after treatment had finished. 

Wishing you well and thinking of you all. M

Hi Markel, 

Thanks again for your response, everything you explain really helps us both. We met with the care team at home today and they were really happy with my knowledge as to what to expect, I explained this was all down to you, with speaking from your experience. Thanks so much!

His infection has started to clear up, so his first chemo/radio goes ahead on Monday.  We are in anticipation but of course excited to start the countdown for his recovery.

But honestly thankyou for ever thinking of starting your blog, and taking the time to speak with me, your feedback  has been like gold dust throughout this! 

I would erge others going through this to take the time to read it. 

Speak soon no doubt.

Duskie x

Thanks Duskie. I would recommend to everybody going through this, whether as patient or carer, to keep a diary and share it in here. It’s very therapeutic, and if it helps anyone else on their own particular journey then that’s just an added bonus. So do keep us updated if you feel able to. 
We will all be rooting for your hubby on Monday. 

Struggling now! We are now at the end of week 3, had 3 days off for Christmas but he seems much worse with pain, first day he hasn't been able to eat anything, so onto the Peg now.

He starts week 4 of chemo n radio tmw which is good, after tmw just 2 more weeks to go. He's got severe tooth ache, dry mouth, can't swallow, really claggy mouth,  hasn't been to the toilet, so to speak for a week, probably due to the morphine, codeine aswell as everything else. Its the first time mylself and others have thought he actually looks really unwell this week.

It's been a tough few days, but all your advise prepared us for it.

I just wish I could fast forward the next few weeks, it's really tough going isn't it! 

Two weeks to go. It’s pretty shitty but if the pain is too much your hospital team will be able to help. They have an arsenal of stuff at their disposal so don’t hesitate to contact them.

When my pain got too much I phoned my gp and he immediately put me on slow release morphine tablets (MST) which helped tremendously. I was still taking paracetamol and ibuprofen every three to four hours along with oxetacaine before eating and Difflam afterwards. I also had Oramorph standing by for any breakthrough pain.

Is he taking Movicol or Laxido for his bowels? It’s really important he does because the morphine induced compacted constipation is absolutely miserable, and can be serious.  Your doc should prescribe it, but you can also buy the genuine articles over the counter if you need to.

Hold onto the fact that it does eventually get better and everything he’s going through should be being controlled by your team. Don’t hold back from badgering them. 

Thinking of you. 

Hi Duskie. Your husbands hitting the rough bit just now. End of week three I was using my tube. I'd been on nothing but paracetamol till then and the pain hit me like a sledgehammer. It took a week to get my meds right. I was frightened of taking too much morphine till I saw my consultant's registrar and she assured me that I could take Oramorph every two hours if needed but that if pain was breaking through at night to let my radiographers know. I had 20mg MST (which Mark has mentioned ) twice daily and morphine top ups through the day as well as paracetamol. It really did the trick with the background pain.

Has your team not given him Laxido or Movicol? Constipation is no joke. It might turn into an emergency so tell them today. There is a salvage regime which sounds alarming but involves lots of laxative in one shot...but it has to be the right one. After that make sure he gets two down him a day and has a poo every day. Apologies if I'm sounding alarmed and ~I don't mean to alarm you but........

Keep his mouth clean and take it day by day...he'll make it.

Hugs

Hi Duskie. Agree with MarEL & Beesuit on getting better pain relief & something to deal with the constipation. The problem is your hospital & GP are probably on Bank Holiday staffing levels….You won’t get an answer from GP until tomorrow I think so you will need to contact the hospital. Do you have an emergency contact number? The CNS/Macmillan nurses are probably not in today but there will be staff on the Oncology ward. Please try every number you have, switchboard (for on-call covering Head & Neck, ENT etc) to get through to someone for advice. Pharmacies are open for laxatives and pain relief, but you need advice on what is right for your husband at this moment. For his dry mouth can he gently chew gum ( sugar-free) or rub a little toothpaste on his teeth to get saliva going? When you get hold of his team they will be able to give him some dry mouth products to try. My mouth was always better just after I’d eaten something - could he try painkillers then something very soft to eat? It helps that claggy feeling. Most importantly, please get in touch with his team/hospital today - even if you don’t get hold of anyone, you will be on their radar tomorrow - you need a good conversation with someone to guide you through the next layer of pain relief, dry mouth products and laxatives. You may have to pester Duskie as it’s Xmas/NY, but you will get help. Good luck to you both

Hilary

I'll add to Hilary's excellent post....I never got anything from my GP that didn't first come through from the hospital, certainly not MST so do get in touch with somebody today. I'd forgotten it was bank holiday. I had treatment over Christmas Day too and missed three days which they made up over future weekends