New Member - Looking for Advice Please

Hello Jonny

l am very sorry about your wife - albeit she is lucky to have you looking out for during this difficult time. I had the same treatment over a year ago with 6 weeks of RT & 5 chemo sessions for tonsillar cancerT3N0M0 HPV+. Your wife is in what was the worst phase for me- l experienced all of what you describe but although there was lots of mucous, l did not suffer from blood clots. The sleepiness for me was probably caused by having to take morphine & just the enormity of having to accept that although l had reached the end of treatment there was still more horror to experience…. By then, l was completely exhausted & worn out by the whole thing.

You mention your wife’s team is aware of all of her after effects & has described them as normal. If you/ your wife remain concerned why not run it past them or her CNS again? Everything you describe sounds normal & has resonated with me. On a positive note, this phase - ( the worst of it) lasted about 3/4 weeks for me. It was the pits! However, bit by bit l began to see improvements thereafter. 

l am sure things will improve for your wife & l wish her strength & stamina at this time & every good luck! If you remain in doubt though, do check it out.

Xx

Picnic1 said:

Just wanting reassurance or advice that is is the norm. I’m so worried about her it’s difficult to put on a brave face all the time.

Hi Jonny. Yes all this is normal. The weeks after treatment end are the worst. I slept for two weeks after RT and my husband kept me alive fed and looked after my pain meds. 
The crashing fatigue is a combination of the morphine and the huge effect of the radiation. 
There is no shortcut to this. Let her rest. Get everything she needs through her feeding tube and she will pull through. 
Honestly. 

Hi, Jonny, as the others have said, this is all normal. I was 100% reliant on my RIG for several weeks, I also lost my voice completely for about 2 months. As her team know about the blood and say it's normal, you shouldn't worry about that. The treatment your wife has had is brutal and knocks you sidewards, her body has a lot of healing to do. She will get there, with time. Take care of her and yourself. 

Ray.

Hi Jonny

It is an extremely tough treatment, our mouth and throat areas take a lot of punishment, some bleeding, meds make us tired....but we come out of it...I spent 12 days in hospital at the end of week 6...but things did improve...and are still improving.

Tough times for patients, family and carers.

Take care 

Peter

Hi Jonny,

As others have said, I am sorry to say it is normal.  I am nearly 7 months post treatment and greatly improved, but I recognise exactly what your wife is going through.  Hopefully there will be improvement in the next few weeks - slow but steady with the occasional blip backwards.

If in doubt always speak to your hospital.  Better safe than sorry.  At the same time stick around because this group will be full of tips and tricks to make her (and yours) recovery easier.

Thank you all for your kind and reassuring comments. It’s great to know we have support from those of you who have been through this.

Re the bloody mucous I called the nurse this afternoon and she told me it was slurry/slough from the weeks of treatment.

I’ve got my big boy pants back on now and feel much better…sorry for my rambling post! All meds and feeds ready for waking her up for the next round and feeling positive again.

My wife is such a trooper and we are confident she’ll get there albeit a long journey ahead.

Thanks again much appreciated x

Hi Just to add as  others have said it’s the normal. I too slept fed slept  for the first few weeks.  The treatments still working , if you read my blog below you’ll see ther will be light at the end of the tunnel. We all recover at different paces. My hubby was my lifeline he did everything for me just remember to look after yourself as well. My hubby used to go for coffee with a neighbour just ti give us both a little bit of space.  
Have a read of this 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

it’s worth letting family and friends read it as well. We’ve completed treatment but recovery can be just as challenging. 

Hazel x

Hi Jonny

Im sorry I’m late to reply but I’m away on my 3rd trip(. 9mths post treatment for T42NbMOHPV+ Tonsil.

I had blood in my mucos for weeks CSN said not to worry some people do some dont. Just a heads up Mucos may/may not get more troublesome if it does speak to your wife’s team and pop back on as we all have things that worked better than others. If the pain gets worse please contact her team are there are many different pain reliefs, I tried lots but finaly found one that took the edge off.

This is a scary time for you and your wife , ( hope you have some support too) we feel worse for a few weeks( some of us months) and then little by little we turn a corner and life becomes a little brighter day by day .

Fatigue can last a long time so dont worry how long she sleeps just as long as she gets fluids/feed and meds.

Big hugs to you both

Debbie

Hi again

Hazel

Your blog is brilliant!!

Peter Harvey’s article was very interesting indeed. Thank you x

Debbie

The fact someone else has encountered bloody mucous has seriously reassured both my wife and I. Enjoy your break. Thank you x

Thanks again for everyones advice and support. 

Hi 

Youre welcome glad to have helped. It shows that there’s a great life to be had after treatment. 
Any questions please ask. 

Hazel x