Hello,

About 6 weeks ago, I found out that my Dad had a trip to the local doctors surgery with a sore throat. The doctor then sent him to see a consultant at the local hospital, who whipped him in his surgery within two weeks.

Why do our parents keep important information like this from us? I know he is trying to protect me but nothing could protect me from the shock of hearing that after the operation on Monday which took 8 hours or so, he was moved from theatre to the High Dependency Unit, for the night. BUt when we go and visit him there on Tuesday morning, we find out that there is a problem with the flap they installed on Monday, and need to have another look inside his mouth to check that it's not going blue. We are eventually told on Tuesday, they have a bed in Intensive care, where he has been heavily sedated, not knowing where or who he is. Yesterday, we were told by one of the consultants, that he is on death's door, but today we find they are reducing his sedation getting ready for him to wake up. Then a few hours later he is back on the sedation for a peaceful (hopefully) night. Does the feeling of helplessness reduce over the next couple of days, or does it continue until he is eventually released from hospital?

Hello Michele

Parents sometimes wish to protect their children (even when they are grown up!) and avoid worrying them.

The period after surgery is difficult as your dad's body has to recover from the surgery and the anaesthesia. The transplanted flap tissue needs to establish a new blood supply to survive. If it doesn't, it can turn blue and there is a risk that the tissue will die and not 'take'. Hence, the worry of the surgeons. They will do their best.

All you can do now is hope and pray for the best. I wish your dad a good recovery.

Sucow's experience with her dad, who had tongue cancer, might be of help and encouragement.

Best wishes
Vinod :coffee:

Hi Michele,

I'm only 35 myself but a parent & son none the less! There is a a point to not telling people every single piece of news as a patient I haven't told my Mam or anyone else for that matter what the max fax team tell me. Anything that causes worry or distress wont be told to anyone unless it has to be told. Perhaps it's wrong to be like this but for me it's best this way.

I hope your father makes a speedy recovery, anything you want to ask any of us patients or Doctor Joshi himself please ask away, it's what make this site popular!

Hi Michele and Alan.

A truly interesting point you've raised.

When I was initially diagnosed I told everybody (family that is).

In fact my wife was with me when I was given the "good" news so I'd no chance of hiding things.
We, jointly, decided to tell son, daughter in fact all the family. (Give them chance to save for the funeral!!)

To this day I don't know whether or not that was the right way to go about things.

I've mixed, if not confused, thoughts on this point. I've not had to deal with as much as you, Alan, have had to face.

Michele, you ask about the feeling of hopelessness. I don't know, I'm on the other end of things being one, hopefully, surviving tongue cancer.

But as I say Alan's younger than me and he's had to cope with much more, and his reasons for not telling people round him of his true situation may give you an insight into things.

Corny as it may sound my ptayers are with both you and your father.

God bless

Hi everyone,

Dad has been in intensive care since Tuesday morning, (very strange to see him, complete helpless, with only the nurses and machines supporting him). On Wednesday we were told that he would be kept sedated until next week, as his kidneys, heart and lungs had failed and they wanted to get him strong enough to cope with being woken up. But when we went to see him, on Thursday, we found that he was having his sedation reduced. Found this to be very odd, as we were told that the shock of coming round could lead to a heart attack, and that only 25% of people actually leave the intensive care unit!
Everytime we see him he seems to be improving but then he takes two steps back, his kidneys are working a lot better, but the ventilator is still helping him to breathe. His blood pressure is really high, or really low, there just doesn't seem to be a happy medium at the moment. He managed to mouth 'I love you' to my mum, which made both of us cry! Mum and I are finding it very hard to cope. Just hope things can only get better.

hI Michelle, I firstly would like to say how brave you are being through your fathers illnessu.
I cannot say much more than has been said mine was a bit different to your dads .
Intensive care it sounds the best place for him at the moment and usualy as in my case you do not remember much about it.
I hope your Father recovers quickly and my prayers are with you and yor family for the strength to help him through this .
Please keep us updated

paul

Hi

Just when I thought things were improved, Dad has been moved from the ICU to the High Dependency Unit, where he was coming along in leaps and bounds. Monday he was transferred back to the ward where he started 2 weeks ago. I have just been told from my mum that he is now back in intensive care as the ward he is on is not wable to cope with the care he needs as he has taken a turn for the worst. On visiting this afternoon, he through up, hopefully not because of me, but today was the day they removed his stitches, had a look at the flap, but whatever they do this, and I wondered if he had gone into shock realising that it is all over now! The hospital have said that he has a fever but they do not know what has caused this. Just another waiting game. When will it all end? Mum is quite stressed as he has been quite horrible to her, now with this all happening, you get to a stage asking when it will all end and when will it all be over!

Thanks for being here! :banghead:

Hi Michelle

Your father is reacting to the physical and psychological stress caused by his cancer and the surgery. Sometimes, we can become nasty and hurtful to those we love and love us. You may find the information on Feelings at Transitions helpful.

Just behave as you would want your family to behave if you had been the one to be ill and behaved like that! Don't react. Be nice to your mum as she will need your support very much now. Be kind and forgiving towards your dad, and pray for the best.

Best wishes
Vinod :coffee:

Michelle,
Both your Mum & Dad are going through a pretty tough time at the moment.There will be times when your Dad will be nasty to people close to him, perhaps as a way with dealing with his problems, perhaps not knowing how how's reacting to people around him.

Sometimes it might be best if your Dad was left alone for a day or phone the hospital to see if your Dad wants visitors on that day, many a time after all the doctors and nurses had been in and out all day a visitor was the last person I wanted, no matter how well intentioned it is.

Perhaps try and speak to the hospital Macmillan nurse, they can be a great source of help.

Take care

Just thought that I would update you on the state of my dad.

He has now been in hospital for 6 weeks, and on week 4 he managed to fail his swallow test, which meant that some of the liquid went to his lungs. Yet again, he was rushed to the ITU, where they sorted him out, and moved him to the HDU, where he spent another week.

Moved from there on Easter Sunday, where he has been improving daily, and hopefully being released on 28th April, with his feed tube still intact.

To be honest, I never thought that I would see this day, when he would be walking back out of the hospital. I know he still has a long way to go, but I'm assuming that the worst is over, he has to have 2 minutes of radiotherapy 5 days a week for 6 weeks.

He still is very argumentative to both me and my mum, but we are putting this down to how long he's been in the hospital - does this get any better?

Sometimes I feel that he doesn't want to get better, he's not doing his exercises, either tongue ones or hand ones, but what can you do?

I seem to cope sometimes, but others I just want the whole episode to be over - please advise if anyone else felt like this.

Michele - good to hear of your Dad's progress,

Please bear in mind that the radiotherapy can be quite stressful for some people.

Why he didn't tell you, and why he's being argumentative I just don't know. We all react in different ways. Some people are out and out terrified, others feel "dirty" (don't ask it's just what was said to me), and some just don't care.

Your Dad will need all the support he can get, even if he doesn't think so. You and your Mum will need the patience of Job to deal with mood swings which most of us experience.

Hopefully somebody more qualified than I will give you some guidance.

Best I can offer are my prayers

Great news Michele!

You just need to be tolerant and do your best. Things should get better when he realises how well supported he is.

There is a tendency for us to take things for granted - especially the love and support of close ones.

Best wishes
Vinod :coffee:

Hi everyone, I've just been catching up with all the different views of how people are coping with their different forms of cancer. Since I last wrote, Dad has been to see the consultant, who told him everything seems OK. He has now just about finished his radation. He has lost an awful lot of weight, and looks very old (older than his 71 years!). He has been doing the garden and going to his "bird" auctions, then he complains that he is tired. He's very moody and abusive especially to Mum, I don't know how much more she can take. :banghead: Can anyone please explain what is happening and why, as we have tried to get hold of the radiation consultant, but there words were patient confidentiality, so we were not able to ask about any of the follow up tests, or what happens next. He is still feeding through his peg, will this be forever? I'm just getting more and more stressed as he seems to get better one day and then does too much then its 2 steps backwards. Any advice?

Dear Michele, Well in my own case my family have dealt with my mood swings, as I do myself, in the 'One day at a time' framework. For cancer patients and their families it is the ONLY way to carry on a sort of normality. If you try to project about what might happen you get more and more tense. That is contagious. Everyone gets het-up.
Obviously in your father's case you can't expect him to follow this. He has been through a gruelling time with the radiotherapy. I am still experiencing the effects on my throat tissues and immune system (what's that!?) five years later.
It is only when I look back through the picture albums at the healthy rosy-faced old me that I feel the self-pity coming and concentrate on today.
Don't alwayws succeed though.
I leap for my cancer symptom file every time i spot a new thingummy I haven't noticed before.
I hope your father gets his Peg out soon. But don't worry about it today. Best regards Ishbel