Family and friends

If a member of your family or a friend, or someone else you know is living with cancer, this group is the place to share your feelings and get support.

Trying to support Dad with Throat Cancer

Jano Pano
Posted by

Hello,

I'm trying to support my Dad who has got a fairly recent diagnosis of throat cancer. I think it's called pharangeal cancer. He has started treatment this week. He's having radiotherapy and a bit of chemo for a large tumour in his throat. The prognosis was looking pretty good but now my Dad is saying that his consultant thinks it my have spread to his lymph nodes and they won't know until he's a couple of weeks into his treatment. He's been manually feeding himself through a peg in his stomach but because he's been missing out some of his feeds he's now been given a machine that can feed him overnight. It's all such an emotional rollercoaster.

Most of my family don't live locally so I'm on my own with it really as my brother can't handle it. I have to put up with stroppy behaviour, witholding information, he wouldn't consent to the referals I made when he was in hospital and discharged himself on the day I went on holiday...only to have to return to hospital a little while later. His GP said he was very silly to do this and not let everyone do what needs to be done.

I understand that he is in shock, feels scared and powerless but I'm finding it difficult to concentrate on my own needs aswell. I've been having trouble sleeping and eating. My flat is like a pigsty. He has me running around giving me job after job.

I'm not sure what anyone can say to this but I feel better already getting it off my chest.

Cannon
Posted by

Hi Jano,

What a terrible lot you are having to deal with!

I think the way forward is:

1)to peruse some much needed help and guidance,you may want to book yourself in for an appointment with your own GP (or your Dads).Gps are not only good at diagnosis,they have lots of agencies at their fingertips who could help you.He can also explain a lot of things to you so that you can see the wood for the trees.Finally,he can ensure that you are not only getting all the help you need at this most important time,but help you level your own life out a bit.

2)try and ask for help from friends and/or peripheral family,if immediate family can't help.Now is the time to swallow any pride if you have it.You need all the help you can get.

3)if all the above fail,or even if it doesn't,ask to speak to his Ward Sister to talk about all of these things.

Please don't think you are alone.There IS a lot of help out there,it's just knowing where to find it DI do hope this helps xx

Keep posting too 

FalcoPete
Posted by

Hi Jano,

Apologies for the 'war & peace' but your story resonated so much.

Really feel for you with your 'load' & predicaments & do feel that the people who are performing the immediate support role (usually immediate family) have a much harder time than those of us dealing with the cancer itself.

People deal so differently with the news after hearing the dreaded sentence 'you have cancer' that we all fear. Given it's your Dad giving you the updated information, it might be worth getting the diagnosis, treatment plan & prognosis first hand from the consultant. That way you know you are dealing with the facts rather than possibly the 'attached emotion' your Dad will obviously have.

Keeping on top of the feeds is so important, especially with head & neck cancer patients as most tend to lose weight during the process. As an example I'm 4 years + cancer free & still struggle with weight issues. Honestly, it is a constant battle for most of us, so not uncommon. What is the reason your Dad has he been missing his feeds - is it a lack of discipline (understandable) or are there other reasons.

For the immediate family, you are absolutely right that it is such an extreme emotional roller coaster, especially if the family can't all pull together through a plethora of reasons or there is only one family member. So often I have heard that the men in the family can't cope with this type of situation & it is the stronger female members that pick up the slack. Although I don't know the situation with your Brother, personally I would try talking to him from the point of view that you, rather than your Dad, needs his support as you can't handle this on your own (although I suspect you have it within you). Appeal to his sense of duty, love & fairness for his Sister etc. (bit of a light guilt trip is what I'm trying to say). Outline the massive range of additional activity you have as they often do not realise.

Would also suggest you rally the family who don't live locally to help maybe on weekends etc. By that I don't mean come & just visit as that often mean more work for you - not what we're trying to achieve here. But, that they actively help with feeding, chores, filling the freezer/fridge, errands, filling up the car, house tasks, blitz your flat, or giving you 'time off' to attend to your own life that is somewhat obviously on hold atm. Often you will need to be specific on what they need to do to help you. Once they know you may find support is usually forthcoming & don't be backwards in coming forwards in how hard life can be in this situation, they often don't realise because they're not close enough to it. 

It can be hard to deal with stroppy behaviour, especially so when all you're trying to do is support your Dad. Again, although not knowing him, this is probably out of character. There is a middle ground to be had here. Some compassion for what he's going through, some compassion for what you're going through (!!!) He needs to remember you have a life too & as much as you want to support him you do have a life that needs to be managed too - otherwise it's definitely not fair on you.

If you need to come back, feel free, we're a wacky bunch but always willing to help, or if you just want to 'vent'. I promise to use my 'ears & mouth' in the proportion they were handed out.

Please do let me know how you get on...

Jano Pano
Posted by

Thank you so much for your reply Cannon. I will definately start reaching out more and speak to professionals to get more information and support. It's great that we have this forum to connect with others. I feel less burdened already.

Very Best Wishes from

Jano

Jano Pano
Posted by

Thanks Pete,

Great to hear that you have been cancer free for quite some time now.

Thank you for your reponse to my post. I think I have to accept my family's limited support. My brother says he has no time. Guilt trips won't wash with him. The rest of my family live over 3 hours away so apart from the odd visit here and there any help is out of the question. Dad does have a few good friends we can rely on so I'm very grateful for that. I've managed to get home help in place from Age UK now although they haven't been back in touch with me personally which is annoying as I've called them several times. The district nurses are very good. I met a couple of them this week.

I'm not sure if the feeding issue was a lack of discipline. Hopefully he will get the hang of this new feeding machine. I had to sort it out for him the first couple of nights but I left him to it last night.  Partly lack of discipline I guess and he's extremely tired all the time. There maybe other issues too I suspect but it's hard to broach these subjects as he gets very upset and doesn't want to talk about these things alot of the time. He's very very low in mood. As the week has gone he has coped OK with his treatment but he is deliberately being difficult at times because he wants to 'run the show' and he expects a lot. He was very tired on Friday because he had chemo as well as radiotherapy.

I really do have compassion for him. It's very sad and I know he's suffering terribly but he has always been a pain in the backside at the best of times.

I will try to contact his consultant to get a clearer picture of things. He deliberately asked a friend to his consultant appointment in hospital to keep me in the dark.

All the best

Jano

FalcoPete
Posted by

Hi Jano,

Great to hear from you again & really feel for you with your Dad & the current situation, it can't be easy.

I wondered if you have thought of contacting the Macmillan Cancer Support help line on 0808 808 0000? They will be able to help you & ensure you identify yourself as the main (only) carer for your Dad when you call. They have I believe what are called Practical Carers who provide...practical support (physical) rather than just psychological. Here is a link to a page that hopefully you will find useful.

As always, please do keep in touch & let us know how you progress.

All the best & hope this helps...

Jano Pano
Posted by

Thanks Pete,

I will definately call the helpline again. He's just revealed to me today that he is only having one more week of treatment instead of the originally planned 6 weeks. So the Cancer has spread to the lymph nodes and it that is all that they can effectively do.

Very Best Wishes,

Jano

Cannon
Posted by

I'm so pleased I helped you,Jano xx

SleeplessSuzi
Posted by

Hi Jano,

I'm afraid I don't have much advice to offer but just to say thank you for your post as it sums up exactly how I'm feeling and had come here looking for advice on. It somehow makes it slightly easier to know I'm not the only one, I'm sure you've felt the same guilt as I have for even allowing myself to grumble about it in my head let alone out loud! 

I've just put the phone down from my dad who is acting very similarly to yours by the sound of things, refusing to do what he's being told to do to help himself, e.g. Not having his feed regularly enough, but then calling me several times a day moaning that he has no energy and giving me job after job. I've just had a midnight call saying he needs to go to a&e because he feels so weak, managed to talk him out of it until morning at least when we will have the same conversation again while I'm rushing around trying to get to work to hold down a job. And then ten minutes later a call saying he needs me to go round now and sort out his internet because it won't connect!? It's hard to know if it's genuine illness, loneliness or just plain demanding!

I'm in a similar situation that family are too far away for day to day help, they visit sometimes but don't see the worst of it, but one suggestion is is there anyone you can ask to have a word with him and be a bit cruel to be kind, even over the phone? My uncle had a word and told him he quite bluntly he needed to sort himself out or he was going to die, and hard as it was it seems to have shocked him into action slightly at least..hopefully might help you.

Think we'll both be onto that helpline tomorrow, thanks all that have details. Hope it gets better for you Jano!
FalcoPete
Posted by

Hello again Jano,

Feel so much for you & your situation.Just want to wrap you up in a 'make it all go away' blanket at least for a while.

Sounds like you definitely need to get in touch with the consultant to clarify exactly what is going on with diagnosis, treatment & the expected outcome. With my Wife & I hearing what the consultant had said, a second time around after the initial shock, reiterating these points in such a gentle way, made us understand & we were able to absorb it properly. This may not have happened with your Dad, so it probably worth pursuing. At least that way you know exactly what the story is if you don't feel you're in possession of all the facts.

Please keep in touch & let us know how you progress - big man hugs to you.

Jano Pano
Posted by

Hi there Pete,

I called the Oncology Dept today and left a message for the Secretary to call me back tomorrow. I hope my Dad has told them it's OK to disclose his information with me. I asked if he was OK with me calling them to find out more and he said yes.

I've heard from my Aunt today that he told my Cousin's Husband that he doesn't want anymore treatment after this week. If the Cancer has actually spread I don't blame him really.

It's frustrating that I'm hearing these things here and there but I guess my Dad is in shock and can only manage to respond to certain questions from people. I've had my Aunt and some friends asking me what's going on all the time and I get stressed out and upset with it at times and wish they would back off. So that has given me a good understanding of why he's been short-tempered and not wanting to talk about it all the time.

I hope I'm enlightened by the Oncology team. I will call the GP tomorrow. If the Oncology team won't even give me a hint of what's what, the GP might be able to clue me up without actually breaking the rules as she knows me now.

One of Dad's friends called me up suggesting that he might need to go in a hospice but my Dad would never agree to that. I don't want that unless its really necessary. I'll leave that decision for the Adult Care Team when they do their assessment but I think I can look after him at home with the right support.

It feels like I have been managing better today. Acceptance and taking things one day at a time.

Thank you for your kind supportive replies.

Jano. X

Jano Pano
Posted by

Hi SleeplessSuzi,

Sorry to hear you are struggling too but I felt relief as well when I read your reply and completely identified with you. It's good to know we are not alone in what we are experiencing.

My Mum died from Colorectal Cancer 15 years ago and Dad had just finished treatment for Prostate Cancer when the current Cancer came to light. So I have been going through this with him for a long time now but it's got more intense since he got Cancer.

The feelings we are having are normal though because we are only human and anger, guilt etc...are natural responses to such stress. I know what you mean about finding it difficult to know when they are being genuine. When we are busy rushing around and they are playing games it can make you feel like you are going mad. When you can't think straight it is difficult to know what to prioritise or when they just want attention.

I got my Dad a personal alarm from the council. If he gets into distress he can press a button on this necklace that contacts a switchboard that calls him and they can establish whether they need to call family, emergency services or social services for care support. It's only £5 a month I think.

It's difficult to set boundaries but has to be done. If we don't meet our own needs we are no good to anyone else. I have been making a real effort to eat and get some rest as these are the things I'm often deprived of. I'm sure you are too at times. I hope you get the chance to do or buy something nice for yourself sometimes.

Lots of love,

Jano. X

FalcoPete
Posted by

Hi Jano,

So glad you have managed to make the call to Oncology. There shouldn't be any disclosure issues especially in these circumstances & your Dad has agreed. I'm sure if you explain to the consultant the 'lack of disclosure' issue with your Dad he/she will be forth coming.

You are absolutely right with the hospice topic - one step at a time.

My Wife felt the same as you with forever asking questions about how I was doing & never a thought for how she was or even asking. Unfortunately, I hear this all too often & it's a real shame as I have often said that I feel that the carers & immediate family have a much worse 'trip' than those of us trying to just recover.

I think your frustration in hearing updates second hand is fully understandable. I would feel the same & find it hard to not voice my upset. The only thing I can think of it that he finds it harder to open up to you because you are so close? It's a bit like the scenario where you feel like you can't talk to a close family member about something but totally open up to a complete stranger in a pub. It's bizarre.

I truly hope you get the information you so rightly need & will keep my fingers crossed. Please do keep the updates coming as you will be on my mind all day today.

2014sara
Posted by

Hi Jano

I'm sorry to hear what you and your dad are going through. Having read through the posts and the difficulties you are having getting information and sharing information I thought it might be useful to share my experience.


Both my parents wrote a letter to the gp giving consent for the gp to talk to me. This is now on their records and avoids complications re confidentiality. 


Also when mum was having treatment for her bowel cancer and then breast cancer I was at her appointments so she gave consent for the consultant/care team to talk to me. However I am sure that if your dad did a similar letter to his consultant saying he was happy for them to discuss things with you, that would help.


As for sharing info with the family, as I attended all mums appointments I would send an email to immediate family members letting them know the latest news. This was to my siblings and aunt (mums sister). I then left it to those family members to cascade the info as necessary. This helped to avoid umpteen repetitive phone calls. I would also communicate how mum was doing generally and if she was having a bad/good day to try and avoid mum being worn out by constant phone calls. 


The emails also ensured everyone got the same info at the same time. They were also a useful record of what was said/advised as it can be difficult to remember details afterwards. I would take notes during any appointments. 


I hope this hel