Depression after successful treatment

Hi kkat, im new to this group and site and I cant believe how similar our experiences are! My hubby was giagnosed with head and neck cancer in 2019, he had all his lymph nodes removed and a tonsillectomy. He had 50 staples in his neck, after the operation and then started a very grueling 6 weeks of daily radiotherapy sessions and two sessions of chemotherapy. He had a reaction to the chemo (cisplatin) apparently common as it can affect your kidneys, it did affect them and he ended up being admitted to the Christie for 5 days. He got through the whole of the year, from being diagnosed in Feb to receiving remission news towards to the end of the year with determination to beat this cruel disease and he was remarkable. Then came covid and lockdown which resulted in him being furloughed and gave him to much time to sit and reflect and contemplate on life and what he'd just been through! I remember the consultant saying the cancer was very treatable, however the treatment is very harsh, he wasn't wrong! The side effects have left my hubby a completely different person, not able to eat for fear of choking, loss of quite a few teeth which has knocked his confidence so much he doesn't socialise, will not go to restaurants and he struggles talking to people. He is on antidepressants now, however struggling with constant dry mouth, tinnitus and other side effects. His main issue for him is the loss of his teeth, especially as we now live in a world where most people are obsessed with teeth and many people judge you on your appearance. There has been no help for him with regards to his teeth, I have pushed and pushed and eventually funding was applied for through the NHS and maxilifacial department, it was agreed that he could have dental implants, however covid has affected this as its not seen as a priority, I get this but its not for vanity reasons, he is unable to eat without teeth. Not enough awareness is there?? 

I feel for anyone going through this, and their families, as It does affect everyone.

I hope you and your family are ok and getting through this awful time

Xx

Hi Kkat

It's an awful situation to be in. Treatment ends and you hope that's an end to it then after the doctors telling you you'll be better in two weeks you face an uphill struggle for m months. My oncologist told me It would be a year before I was my old self and he was spot on.

Lots of folk here have had a short course of antidepressants. There is no shame in it and they have really helped. 

Recovery is a marathon not a sprint and there will be bad days. We all get there in the end, just some of us take longer.

Macmillan offer six sessions of counselling free so it's worth exploring that.

Have a look HERE

I had Auricular acupuncture to kick start my saliva and there are a couple of posts in my blog (linked at the bottom of my post) with some pictures of where the needles go. You have to remember that acupuncture is a holistic process and I found it very useful for my general well being too.

Have a read of this excellent article by psychologist Dr Peter Harvey who works with cancer patients. It resonates with a lot of us

After the treatment ends

I think it's time your husband got some professional help...but he needs to want it himself. It is out there

I'm happy to chat to him on W****  A** if he doesn't actually want to speak to anybody. Just PM me 

Then there is always the macmillan support line which is at the end of my signature

I really feel for him. It's a dark place to be

KKat said:

However, I wish I could help Hubby in some way - any advice or signposting us somewhere would be greatly appreciated 

Also I'd like to add The Swallows Head and Neck Cancer support Charity to the list. The support line is manned by 24/7 by either Chris Curtis who is a HNC survivor or his wife Sharon 

The Swallows

Juke19 said:

I feel for anyone going through this, and their families, as It does affect everyone.

Hi Juke, welcome to the Community.

Do please take a look at the links I made in my post to KKat.

Re the dry mouth...Acupuncture did help me but I think the biggest contribution came from. sugar free chewing gum. I didn't  even have to chew it much as the presence of the gum tucked into my cheek seemed to help tremendously.

There is a product called xylimelts which is a tablet you stick inside your mouth at night to keep your mouth moist. I still use them four years on. It works best with a little saliva so it sometimes best to start it off with a tiny sip of water if your mouth is really dry.

Bioxtra mouthwash is great at keeping the mouth fresh and lubricated. I get it on prescription

Hello. Sorry to hear this. I was very depressed post treatment & had dark thoughts, couldn’t see the point in going on. I contacted Macmillan via Live Chat & got recommended for counselling. After a phone assessment I received 6 phone counselling sessions. These were a lifesaver. I can highly recommend doing this. All the best. 

Blod said:

After a phone assessment I received 6 phone counselling sessions. These were a lifesaver.

Hi Siân

That's great to hear from somebody who has done this via Macmillan 

Hi KKAT

I struggled for a while to be able to eat, it takes time and patience. I still don’t have full taste back after a year, it’s getting there though. When I first came home I was terrified of choking, it does get better. I spoke to my cancer nurse who made an appointment with the speech snd language nurse that helped with my eating. I was given the all clear, but I was still convinced it was going to come back, any tiny little thing, my mouth sore, bad taste dry mouth , and I said it was back. Good support and advice on here helped me. One good source of help was as Dani has advised 6 free counselling sessions from Macmillan, please try to get your husband to contact them. I feel so much more confident after speaking to my councillor, she gave me coping strategies. I hope things get better for you both, it just takes time 

In simple terms it's PTSD Kat, and the way you describe it is extremely common.

Happened to me, everyone thinks you've finished and you're better but it's a huge ordeal to recover from.

I had anti-depressants for a while and counselling, the first session of which I sat down and burst into uncontrollable tears without a word said, was 10/15 minutes before I could talk.

Completely empathise with his (and your) feelings, absolutely no need to feel embarrassed by it.

Hi K kat can’t add to what  Dani and the others have said. My oncologist told me a year out if my life told me he would cure  me he did both. I like Dani are happy to pass on any help vis w. Chat or send me a friend request and we can exchange contact details. The acupuncture is auricular. Has he read our blogs he will see that there’s light at the end of the tunnel but sone need a bit of help and antidepressant’s are quite common in head and neck patients. As we say we do everything with our mouth and thrust. Unless you’ve personally been down the road you don’t realise how much eating n drinking is part of who we are. 
I’m almost 4.5 years post radiotherapy and chemo now happy to help anyone . 
Hazel  xx

Hi Jule same applies to your hubby as I’ve just typed ti Kat any help just shout. Xyimelts still use every night my saliva us much much better sugar free gum I still use . Yes our teeth are vitally important we don’t get enough help. I now pay privately to be seen every 3 months and have fluoride varnish put on. 
there also something else he could try propolis available online good old Amazon. I suffer from burning mouth when I eat certain foods it helps. Plus bioxtra prescription from gp as a mouthwash it’s very gentle. 
hugs Hazel xx