New Member - Looking for Advice Please

Picnic1 12 days ago

12 replies
140 subscribers
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Good Afternoon

I have been following this wonderful forum since my wife was diagnosed with T3N2cM0 p16- scc of the oropharynx back in April and it has been my go to source of information and sanity….stayed clear of Google.

I’m looking for a bit of advice if possible please. My wife has completed 30 radio and 6 chemo sessions. She did remarkably well until week 5, ate less but still managed a little, swallowed and drank well, controlled the pain, walked, watched tv and was truly marvellous. She started to use the PEG full time and is still coping well with it.

Since completing treatment last week she has gone downhill, can’t swallow without tremendous pain so doesn’t bother and uses tube for hydration/medication/feeds, can hardly speak, the mucous is relentless with clots of blood and she’s sleeping nearly all day and night (apart from feeding, meds etc).

I’m really concerned about the blood in the mucous, although the team said it’s normal, as she’s had this occurrence of blood for 5 days now. Concerned also about the amount of sleep too, she’s barely awake just for feeds etc, she’s like a shadow of herself and it’s like she’s on another planet.

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.

Thanks for listening

Jonny

Debbielouise 11 days ago in reply to Picnic1

Hi Jonny,

Anytime you have a question or a worry just send the group a post ,and speak to your wife’s team x

This is a really tough time for your wife and for you also but there is light at the end of the tunnel … it’s just a very long tunnel for some of us.

Sending you both all the emotional strength in the world.

Remember she probably just needs to rest ,rest and rest some more.Brighter days are ahead

Debbie

Liz111 10 days ago in reply to Picnic1

Hello Jonny

It seriously isn’t a case of getting your’big boy pants on’, and you are not rambling. This is scary stuff for partners. I know that my diagnosis and treatment hit my husband really hard. In so many ways I think it was harder for him than for me. Like you for your wife, he pretty much kept me going with feeds etc.

The period after the end of treatment was the worst time. Not only is it somewhat counterintuitive that things deteriorate after treatment - although we were warned this would be the case - you also find yourselves, after weeks of almost daily contact with the medics, and other people going through the same thing and their support , on your own relying on the telephone to deal with whatever presents. All I can say is that it does get better. I’m now 9 months post treatment and while I’ve still got a way to go to regain some of the weight I lost, my eating is getting easier…and quicker. You have said your wife is a fighter. She will get through this.
Please make sure you look after yourself as well.

Liz

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