Husband's Journey

Hi Brandygirl

My husband also had tonsillectomy - cancer found in L tonsil and lymph node.  He is just finishing 3rd of 6 weeks of radiotherapy.  He also had a RIG fitted but has not yet used it although he is now only able to take liquids - mostly Fortisip - has had infection in RIG site and continuing soreness.   

All I can say is try to take one day at a time and make full use of your medical team, and if he is struggling let them know.  It's a very hard treatment but we have been told the prognosis is good, so are focusing on that. It's hard for them to remain positive when they are feeling so bad but there is a lot of support and good advice on here and if there is a Macmillan centre in your hospital you will find them great support.  

Good luck!

B

Hi there,

I imagine that now the rush of all the pre-treatment preparations is over, the adrenaline has worn off and the reality of the situation has started sinking in.  To start with, it feels like you are on a conveyor belt, hurrying from one appointment to the next.  Once the treatment begins, you realise that this is it now for weeks, and you know that all you have to look forward to is rapidly increasing pain and a whole raft of unpleasant side effects, some of which are life-changing.  Believe me, it's not a pleasant prospect!

As a patient myself, I got through it by realising that it was this or nothing.  No matter how bad it feels, I am not ready to shuffle off this mortal coil yet and so it is better than the alternative. 

Time telescopes alarmingly when you are going through this particular treatment, and even an hour can seem like for ever when you are in such discomfort.  So, I used all the distraction methods that I could.  I slept, I watched endless medical programmes on the telly so that I could see all these people who were in a worse state than me, I read, I pulled weeds in the garden - anything I could think of to stop me from turning my attention inwards and focussing on the discomfort.

He will need to feel that it is ok to complain as much and as often as he likes, with no judgement on your part.  He needs a safe space to rant, cry, withdraw, grumble, or whatever he needs to do.  He may need support to help him manage the practicalities (picking up prescriptions, shopping for odd things like soft toothbrushes and mint-free toothpaste, and preparing all sorts of meals that he may or may not be able to eat.

Some people feel guilty for putting their family through the upheaval and distress of the treatment; some people cannot handle being faced with serious illness or their own mortality, some people simply don't like being ill.  Whatever the reason for his low mood, at this point I feel that the best thing you can do is to acknowledge and accept it, and just let him know that you love him and are there for him if and when he needs you.  Trying to help him be positive again is a nice idea, but he may not be able to do that in the shorter term.  It is possible that you are needing him to be positive for you rather than for him - I know with my husband I far prefer when he is in a good mood so I will work to keep that, but I also know that he needs to express his grumpiness if he is feeling grumpy, because bottling it up and pretending that all is well when it isn't only makes him feel worse.

Good luck to the both of you, and feel free to ask if you have any questions.

Best wishes,

Josie

Hi Brandygirl. So sorry your husband is feeling so down in the dumps. I can only echo what everybody else has said. Just be there for him to lean on. If he doesn’t want to be positive it’s because feeling negative is his way of coping. I was the same and every time my husband encouraged me to be positive I could have whacked him

You might well need to nurse him in the last couple of weeks of treatment and maybe one or two after. My first two weeks after treatment ended were the worst and I slept most of the time with husband setting up the overnight pump feed and getting my meds in on time via my NG tube. 

It does get better

Then when you realise you have survived you start complaining of the side effects the treatment has left you rather than being grateful for being saved. I’m saying this tongue in cheek by the way. 

Hang on in there. 

It will be over before you know it.