New to group

Hi Betsyflower. Welcome to the group that none of us want to be in yes you are in the right place I I am just over 2 years post radiotherapy and chemo for h p v 16 + tonsil cancer with several affected lymph nodes. True the journey is tough and treatment is hard I was 62 and a wimp but if I can do it so can your hubby. Below is info on my blig with links to others it may help you. Re children depends how old they are if the older ones can help. My hubby was my lifeline he drove me everyday for treatment we had a 90 min round trip your hubby may be ok if it’s near yiu I kniw people who were 20 mins from Hhospital  and were ok I would say It all depends te covid snd schools hard one. I hsd 35 radiotherapy sessions  snd 2 x 10 hour chemi. If you have family who can help I woukd rope them in. Sorry nurse scared you. You are on right forum fir hell. Baby steps us the way to go take it one day at a time. The h p v  diagnosis is a better one as tumours do respond better in most cases. 
If u want to chat privately send me a friend request. 
Hazel xx

Good evening Betsyflower, sorry to hear about your husband, i have not had tonsil cancer but have had it elsewhere in the head and neck involving surgery, radio, and chemo. Im sure you can make a bubble with this other person before things get worse with the virus as it would make life easier for you all.

    This nurse has not done a very good job in my opinion,in fact, has made matters worse because nobody knows how people are going to react, cope or recover from cancer and the treatment. If feeding becomes a problem there are solutions with either a PEG ( feeding tube in the stomach) or an NG (feeding tube via the nose ) where liquid supplements can be administered, I believe this is what Hazel had, i had a PEG but they both serve the same purpose even liquid meds can go through the tubes. I'm not saying it's not going to be tough especially towards the end of treatment and after. 

    You may have to keep your children from school to shield him, maybe check up on this as I'm not up with the does and donts of schools etc, maybe the school could advise. I think if you get some sort of routine set up within the family then it will make life a lot easier and pleasanter.

     I know when i was having radio and chemo i was offered transport to the hospital and back, people volunteer to take patients in and then take them home, this was sorted out by the hospital oncology department. I never had to use it but there were plenty who did, again it's worth checking because of covid. 

   I think between you working together as a family bubble and outside help if needed you should be ok, I'm so sorry the nurse has given you a feeling of depression, I'm sure a lot of us on here would think quite differently. Hazel is very good in the tonsil area and as always gives great advice. So if you need more help or advice then re-post or private message like Hazel mentioned. Sorry, I waffled on a bit, wishing you, your husband, and family all the best, take care.

                                                                                                        Chris x

Hi Betsyflower

Sorry to hear about your husband’s diagnosis. It must be hard with the Covid situation how it is at the moment on top of everything else.

It must be even harder having to factor children into the whole equation.

I’m sorry that the nurse was so negative. It is true that there are challenges during treatment but everyone is different and some manage better than others. I think she was giving you the worst possible scenario.

You sound as though you are really supportive but don’t underestimate your husband’s resilience. I’m sure it won’t be totally down to you to manage everything. You will be a team.

Although my husband was very supportive it did fall to me to make sure that I took my painkillers at regular intervals as it was survival to make sure that the pain was kept under control. I think you will find that your husband will feel the same about it. Encourage him to write down when he takes his painkillers so that he can keep track when his next dose is due.

Your husband may also feel able to drive himself for his radiotherapy and chemo some of the time. I managed to drive myself quite a bit although I had radiotherapy only.  My husband and daughter were happy to drive me when I asked but I wanted to stay as independent as possible.

Take one day at a time and yes there will be bad days but the treatment will eventually be over and then you can both look forward to better times.

Best wishes to you both

Lyn

Hi Betsy

I agree with all the above replies.

You can go it alone, I did with my husband's help but with four young children it is going to be a challenge. Might I suggest that you first call your husband's  Cancer Specialist Nurse to clarify the shielding/bubble bit. She will be in a position to gat a definitive answer you can rely on then listen to nobody else's opinion.

As Chemoradiation proceeds your husband will need a lift to his treatment, though he might well be able to take care of that for the first two weeks. Most health boards offer transport but depending on where you are it can make it a very long day at times.

We are all different in the way we respond. I have met many friends here on the way to recovery and I must admit the men seem to do better with holding it all together especially if they are young.

The treatment is tough but doable

It's not that time yet but the essence of good pain relief is to do it by rote, make a timetable (jotted on a piece of paper on the kitchen wall is as good as any) and press on from there.

Have you a timeline for treatment?

HPV + cancer is eminently curable albeit brutal to treat but in six months time most of this will be a blur.

Come back here as and when problems arise and you need advice and for those tips that only fellow sufferers seem to be able to offer. Meanwhile get your husband to pack on a few pounds as he will lose weight during and after treatment.

We are all available for private chats, just send any of us a message.

Have a look at my blog linked below but do take it with a pinch of salt. I was 67 when I was diagnosed and a bit of a coward. the diagnosis floored me. Even at that age I felt immortal. But here you go, nearly two years after treatment end I'm fine and having to cope with few manageable long term problems and even then they continue to improve.

Best of luck

Hi Betsyflower - have sent you a friends request as my husband was in a similar position to yours last years.

Margaret

Hi!  I think ive accepted the request!  Still learninv to negotiate the site!

Hi Betsyflower

Hope the really good advice has helped to ease your anxieties a little.

We really do all react slightly differently to the treatment so it may not be as awful as the nurse has intimated.  Always good to have some support in place though in case it's required at any time and some advice from health professionals and school regarding shielding and Covid restrictions.

Lots of.us have received a similar diagnosis and been through similar treatments so lots of support and advice on the forum should you need it.

Wishing you all the best.

Linda x

Thank you.  These comments have been very reassuring.  Feeling much more positive now x

Hi Betsyflower. I also wanted to add that I was told that I would need a feeding tube and morphine for pain. I got through my treatment with neither. So just confirming what everyone else has said, we all react differently. I managed to drive myself to some of my appointments too. The only one was the chemo as it just wiped me out for several hours after.

All the very best and I hope it turns out to be a lot more underwhelming than has been described for your family.

Tricia

Piya10 said:

Hi Betsyflower. I also wanted to add that I was told that I would need a feeding tube and morphine for pain. I got through my treatment with neither.

I absolutely agree. I know of two ladies just finishing their RT. One has an NG tube and the other looks like she will get away with it. 
there is an age difference and the second is not only younger but has embraced a significant holistic support strategy which I’m sure has had much of an impact. I’m impressed.