Dad refused his post op chemo

[Hope1972]

My dad decided to cancel his appoitnment yesterday with the oncoligist as he has decided he does not want his post op chemo due to his poor post op recovery. He feels sick everyday, still not sleeping , no appitite , low mood, no energy despite all of the medication combinations he has tried

He was intially diagnosed with T3N1M0, however with the pre op chemo this seemed to have got rid of the lymph node involvement and when he had his post op appoitnment the consultant said he was very pleased as it wasnt as bad as they thought, no lymph nodes were positive. However he went on to say he would like dad to have the post op chemo as "its the icing on the cake".

My dad is around 10 -12 weeks post op now and i can honestly say i really cant see any improvement at all and my dad just feels so poorly and states he is going down hill rapidly.

I dont know what to do or think anymore.

Is my dad giving up?

His specialist nurse advised dad to think of food as medicine and also advised it is now upto my dad to get better as there is nothing else they can do.

Mam said he just forces food down and just doesn't enjoy anything at all still.

I just feel like this is never ending and would of thought i would of seem slight improvement since his op but i cant see any still.

He has tried every anti emetic as well as dexemthasone ( steriod ) with little or no effect. His sleeping pills dont work and stays awake most nights. The gp has px antidepressants around 2 weeks ago.

The jeg is also still insitu and my dads eyes look sunken in. He no longer goes out or drives as he says he is just compleatly exhuasted.

Im at a loss.

My worries are

1)reaccurance due to not having his post op chemo

2)My dads mental health state

3) lack of sleep

4) lack of food

5) Constant nausea

6) lack of energy ...no longer wising to go out or driving

7) worrying that dad is giving up.

Im still grateful my dad has had this op but feel like im losing him ...i feel guilty saying that.

I would be grateful for any comments or suggestions as always thanks

[phil]

There are a few members in our support group who could not tolerate post operation chemo and another who refused it. All of them are doing well but this operation takes its toll and recovery can take a long time. It's still very early for your Dad but there is no reason why he cannot make a full recovery but it will take time. All the very best to him

Phil

[ccfc]

Hi, I am five years post op this month. Ten to twelve weeks is still very early days in terms of how long it takes to "get over"this. I doubt you will find many people on here who have had this op at some point in there recovery feel like giving up. At this point it won't feel like it to your dad but there is light at the end of quite a long tunnel. Best wishes, James.

[ELI55]

Hello Hope,

You must be worried, and I send my sympathy to you and your mum.

Don't fret too much about post-op chemo - in an ideal world it would be good, but my husband wasn't offered it as he missed the "window of opportunity" due to an extended hospital stay - this was over 3 years ago now.( his staging was the same as your dads)

With regards to food, I doubt many posting to this site enjoyed their food for a long while after the op - it is brutal and requires a long period of learning and adjustment. Try and see if there are any foods at all that he does better with, get him to drink fortified meal replacements if he can tolerate them, even a few sips at a time.

Obviously, I know nothing medically, but is it worth asking if he still needs his jeg ? - he may feel it is a sign of recovery - also I'm sure I saw a post on this site where someone improved after removal of the jeg.(I'll see if I can find it again!)

He sounds very depressed, but it can take more than a couple of weeks for antidepressants to start working - I would make sure he perseveres with these. If at all possible, encourage him to get some fresh air each day - not easy this time of the year I know, but a walk round the garden, or to the local shop for a paper if not too far away. I honestly think his depression is the overriding thing - if you can find some way of breaching this, he may be able to cope better with the physical miseries ,which will improve with time - and it is really early days for him.

Finally, do you show him any of the posts on this site? I would try and get him to read them, including your own, to show him just how worried you are for him but also how others have come through the same op eventually.

I do hope things improve for you all soon.

Very best wishes,

Elaine

[Hidden]

As others have said, it is not unusual to feel depressed and without hope at this point, but normally it passes, but not easily.

For patients who have successful cancer treatment, around 25% have significant depression or other mental health issues coming to terms with what has happened, to the extent that they need some form of counselling or specialist advice / discussion. And around 10% need medication to help with depression. So it is a normal part of the post - surgical treatment to go to a counsellor to talk through and come to terms with what has happened - or to need anti-depressants. Men tend not to be able to discuss their feelings about this sort of thing as well as women can.

The specialist nurse is probably right in that it does require your father to come to terms mentally with things in order to move forward. This is easier said than done and he will need specialist help, at a time when he himself recognises the need sufficiently for him to do this. This is part of the courage required for a recovery.

I do not think that not going through with chemotherapy will affect his chances of recurrence necessarily. You never know these things until around five years time, but it is true that many people manage very well without it. The reasons for his declining the treatment may be a different issue.

Lack of nutrition and lack of sleep will inevitably lead to feelings of exhaustion. The nutrition improvement will probably come from tests for vitamins and minerals and then having build-up drinks to ensure a reasonable intake. But one does feel exhausted for much of the time when your body is using all its energy in healing and recovery.

The lack of sleep and exhaustion are a bit contradictory in some ways. Sometimes you feel as if you never go to sleep when you do in fact sleep for periods. It is at night when anxiety tends to be worse, and it is sometimes really difficult to get comfortable. Trying to get fresh air, some really gentle exercise and a routine do help, as can physiotherapy.

Domperidone or other equivalent medication can help with nausea. I am sorry to say that actually enjoying food is a bit of a luxury that will seem unobtainable at the moment. But getting the digestive system back into operation again is an important goal. Some people do just eat porridge, or something else that they can actually cope with, for a while. Aiming actually to enjoy food might just have to be delayed and put on the back burner for a bit. There is a recipe book that you can download from the OPA website or through the helpline 0121 704 9860.

He will look very thin and gaunt at this stage; the body creates its own priorities and concentrates on healing and survival rather than any kind of ideal weight or look. There is a kind of grief that one feels for the loss of health and strength, and this takes quite a lot of getting over. It is like a mental track that one has to go through as well as the physical/medical one.

I can appreciate the validity of the feeling that you are losing your father in this situation. Let's hope that this is a dip in the normal pathway after an enormous change in life after which things start to get better.

[kiddy]

Hi I do feel sorry for you and your mum as it must be hard to watch. My husband and kids also felt the strain. At first I didn’t want to go through with the post op chemo knowing how many side affects I got pre op. However I did change my mind. I didn’t have the red drug Epirubicin which makes you lose your hair. I coped for 2weeks on Capceitabine each cycle as had many side affects from that. The thing is I did count down the days and get through it.

I know there is a big thing whether the post op chemo does anything more for you. I think it is just a safety blanket.

Your body goes through a massive operation and it does take time to heal. My eating has got better. I don’t ever feel hungry but get hangry loss of energy. I am 20months post op now. Eat little and often what I like apart from sweet things and some dairy which gives me dumping still.

I go to the gym with some Macmillan friends I have met. Try to get out for a short walk or go for coffee. Sleeping is still upright due to reflux.

My husband and I used an app mindfulness to help us relax. You get 12 free sessions of breathing exercises. We put it on at night and after a few nights never got to the end of the session before falling asleep.It is worth a try. Maybe some of his drugs are interfering with his sleep.

I didn’t get my feeding tube out until 8 weeks after chemo but it did feel better after.

I hope he improves. Whatever the outcome of chemo is.

Best Wishes

Debbie

[Rsw1fe]

For what it's worth, the team who treated my husband told him that post-op chemo was "poorly tolerated" and he decided not to have it. That was 6 years ago and he's fine.

It does seem that your dad's depression needs treating as a priority. Good luck to your family. Our thoughts and hopes for him are with you.

[Spikey]

To echo what others have said, don't worry about the post-op chemo. Like your father, I was T3N1. I had one cycle of post-op chemo, which made me very ill, and the remaining cycles were therefore cancelled. That was 10 years ago.

It's more important to focus on his recovery. Is he able to get any exercise, e.g. short walks? Does he attend a support group (his CNS should be able to tell you if there is one in his area)? Has he had any counselling - if your local hospital is unable to provide psychological support, your local Macmillan centre may be able to help?

I wish you all the best.

[Hope1972]

Hi all

Thanks so much for all of your input again the support is great for tips ect.

Anyway im so happy as my dad has had 2 really good days since starting his anti sickness tablets and depression tablets last week.

Ive advised him to eat an avocardo daily as its packed full of vitamins, full of calories 250 cals and is so easy to swollow ...ive told him to eat it as a medicine. He eats it with honey lol.

Yesterday he asked me to get him a dominoes pizza, i found it odd as he is normally a meat and veg guy.I have never rushed around the pizza shop as quick. He had 2 slices for his tea 410 cals whoooo.

Onwards and upwards ❤❤

[ccfc]

Good to hear he is eating better. Pizza was the answer all along. My wife and family supported me all the way and you are doing the same for your dad. Best wishes, James.