support for family dealing with cancer

Hi KellyLynn

AS you can see by my profile my husband has cancer, in my experience it is normal to feel guilty over just about everything, but I'm sure neither your Mum or Dad will expect you to just drop your lives for them.
Try to make sure your mum is getting all the practical help she needs from the appropriate authorities ( macmillan can help with this).This will the at least put your mind at rest on that score. We don't want our boys to rush home and be with us at the drop of a hat, and I'm sure your parents don't either so try not to feel guilty.
Be there to listen to your mum though when she is down and let her know that you are there for her when needed.
I have very good friends does your mum have people she can rely on
Would it be possible for her to use this site she would find it very helpful if she could. Does she have accsess to a computer.
I hope you find the help you need as well
Love
Tina
xxx

Hi Kelly. I sympathise with you and your family at this awful time for your Dad, Mum and family. There is no easy answer to it. What you have described however shows how you do care and love him and the practicalities of being so far away do make it a difficult practical problem to by physically present. Just making Mum and Dad aware of how much you love hime and care for him means a lot. Dad will know and both he and Mum are coping in their own way with this difficult situation. Send a card or a letter as often as you can, let him and your Mum know how much you care, let them know you will come down if they call you and/or your brother. Nature has its way of allowing your Dad to adjust to the situation, its primarily a problem which Dad and Mum will handle, because they have to. Knowing you and your brother are there, albeit caring from a distance does support them. Try and allow some time for a visit in the near future and keep letting then know you are there and do care. May God bless you and your family at this time, and bring peace to you. David

Dear KellyLyn

I wouldn't for a moment say that for some patients it is personally psychologically best for them to say, "Right, my number's up, and I'm going to accept that I've been given notice to quit, and I'm going to be at home and let nature take its course."

And that may well, well be the situation for your father.

BUT, I would also say that, given the possibility of CUP (cancer of unknown primary) as his actual condition, would you (if not him!) really not want to check out, at any rate - even if only by an email or phone call - with the CUP specialists at MD Anderson as I mentioned in my other mail to you?

Doctors can - sometimes rightly, but not 100% so always!! - simply advice patients and their families that 'their time is up'. And, as I say, this may be so for your father. BUT, isn't it worth getting, at the very least, a second opinion?

The very fact, to me, that you use the phrases 'secondary cancer' and 'terminal' as though well, that's it then - is, to me, an indication that that is what the docs are telling you! But people with secondary cancers can - with treatment - live for a lot longer than their 'natural outcome' (ie, untreated) would allow them (sometimes years!). Yes, some cancers ARE untreatable, and there are people here on this site who are in that situation. But do you really know that yet for your father? How long ago was his original cancer DX?

I do find it slightly worrying in case your father's doctors are simply 'writing him off' without making ALL the effort they can to extend his life with what is possible medically (IF that is what your father would want, that is.)

May I ask how old your father is, because that, too, may be affecting the doctor's attitudes. If they think 'oh well, he's an old guy, time to let him go' that is, after all, only THEIR opinion on the matter! Docs CAN be only too ready to let 'the old folk slip away' - my sister in law's mother was given that judgement 'It's time for her to go' when she had a very weak summer last year - but to their astonishement she rallied very nicely, and has had another good year of active life, well into her mid-eighties!

So, I guess my bottom line is this. Whilst I would in no way suggest that the 'best' is to plague someone with endless investigative biopsies/tests and attempted treatment, when it will be to no avail, I would - if I were in your position - at least check out that your father's docs ARE making the only decision that is medically possible (and not just medically possible for them!!!!)

If you are worried about US medical costs, I can well understand, but there ARE charitable programmes in the States, and, after all, what you are mainly after is information - eg, on how to id a CUP and treat it - which may be far more cheaply availble than the treatment itself. It might also be possible, perhaps, to have the biopsy tissue samples simply sent to a US CUP centre like MDA, which, again, would surely be considerably cheaper than visiting!

But even without the USA, I cannot believe a country as wealthy and large as Canada does not have a cancer centre where CUP is not one of the oncologists' speciality!

I would also say something that might sound a tad cynical, but I do think it can play a role....that is, a doctor's curiosity! I do think that doctors find a mystery illness 'challenging' (!)and can often be inspired to beaver away until they come up with the right answer (I know this happened to a friend of mine's father, who actually had the guy from the path lab come up to visit him in the ward, once he'd finally identified what was afflicting him, just so he could see the real patient, and not just the dodgy cells of him!)

I'm sorry if this post of mine serves only to distress you further. I say outright that I am at a very early stage myself in getting to grips with the impact of cancer on a family - my husband has metastatic (ie, secondary) cancer - and I am still at the stage where I have in no way yet 'given in and given up' on him! But that may change, I have to accept logically, and accept that 'endless fighting' is NOT going to make any difference at all, and I, too, will have to move into that next stage of 'acceptance of imminent death'. So please take all my comments in the context that I'm still, for now, at the 'we MUST fight this!' stage of 'cancer-coping'.

Whatever you do, all the very best to you at this exceptionally difficult time.

Best, Julie.

PS - don't discount that your father, if the DX is recent, be suffering very badly from depression right now. It wouldn't be in the least surprising, and that may affect his 'rational judgement' so to speak when it comes to seeking further DX and treatment.

I think you have been given a lot of different opinions to think about already. I would say that the communication thing is really important and, whilst you don't want to disrupt your lives, I'm sure you will want to make sure that your Mum and Dad don't feel abandoned. Do you each have webcams so that you can talk to and see each other? This will also give you a guide as to when you actually might need to drop things and fly over.

Letters are also another wonderful way, because the patient has something to hold and keep looking at (you can laugh, but I have kept my birthday cards up on the bookshelves in our bedroom now for four months, and they still give me a feeling of having lovely friends around me!)

I appreciate that Julie is a really determined fighter, but I can empathasise that there does come a time when treatment is no longer holding back to cancer, and is then only causing extra pain. Chemo and RT can cause terrible side-effects, there are people who find it distressing to be in a hostile clinical environment and would rather be at home in the place where they have had many happy memories and are surrounded by the people and things that give them comfort and love.

I hope that your mum has enough practical support and is not looking after your Dad 24 hours a day, and also that she has someone to take her out and give her a bit of a break regularly.

Please let us know what happens. With very best wishes xxx Penny

Thank you Tina

What you wrote made a lot of sense. Mom told me to come when I have to and left it at that. I've been home twice in July and just seeing the change in my Dad that quickly is really hard to take. I won't get better and every day he is fading away more. It is heartbreaking to see and to hear about and that is why I feel guilty because I can't be there as much as I want to but being there is soooooooo damn hard and coming back to my home I feel relief and guilt as well.

My parents have great friends that I have met on my visits so I know she isn't going it alone and I feel good about that. Alas, no access to a computer, my brother and I do a lot of research and tell her what we find.

Thank you for your kind thoughts. I hope things are well with you and your family as well.

Kelly

Hi Kelly Lyn

Nothing people say is going to make everything fine like some miracle but you must grasp all the help and support you all can, Believe me your parents understand, I feel for your mum as she is not only worrying about your dear dad but of course you and your brother as well. I know because i worry about how my sons are coping they adore there father so everybody is trying to be strong for each other. But don't forget to take time out for your own feelings do everything you can practically for your Mum and Dad be there to listen them, whatever energy you have left look after yourself your life has to carry on. Kelly do you have your own family.

Keep posting let us all know how you are doing

Love to you and your family

Tina

xx

Penny has spoken wise words, and if fighting has become more ordeal than opportunity, then it's the right decision to stop.

All the very best to you at this very painful time for you and your family.

Take care, Julie.

I can totally understand where you are coming from but I can see it from the other side as well so you shouldn't feel guilty. My mum has terminal cancer and is in a bad way, she is currently in hospital with pneumonia as well as renal failure among other things. Prior to going back into hospital we moved her to be near to me as she is on her own and while we live just outside Glasgow, my brother lives in London. He is struggling with the guilt of being so far away and the fact that he can't be here all the time and has to go back to London for work. He says he also feels slightly detached from it all when he is away but that is understandable. All I can say is that every time you visit your dad, it takes the pressure off your mum. I certainly feel that way when my brother comes up. I still need to do all the things on a daily basis but when he is around (even for a couple of days) it allows me to do some 'normal' things, even things like popping out to the shops, spending times with my kids and sometimes being around people that don't know what I am dealing with daily. It is a harsh reality but life still goes on, and you should not feel guilty. The time you spend away living your own life will help rejuvenate you for the times you need to be with him and your mum and they will gain a strength from you that you probably aren't aware of. Try to balance the visits between your brother and you and that means that your mum gets twice the support but without losing touch with each other (as talking to him too will help you) What works for us might not work for you, and everyone carries their own guilt no matter how much you do but you will work through it yourself and as long as you really are doing as much as you can, then you can have a clear heart. It isn't an easy time and I have had many issues with my mum over the years that trouble me and can cause guilt and anger and I still can't quite get my head round it all but I can't let myself think further than tomorrow and I try to go to bed at night reminding myself that I have done today all I could and tomorrow I will deal with what comes. Thinking of you.
Gxx

Hi my mum has bladder cancer,told 5 wks,its hard to be there,you dont know what to say,or do.
Im married with 1 daugter who 3 yrs old just started pre school,she cheers my mum up and takes her mind off the cancer.
Should be starting chemo next,take it from there.
Just being there helps
Im a new member,joined last week,only had computer 2 wks,not very good on computer,dont understand alot of it
Take care,hope to talk to you soon.
saffy

My dad passed away on August 26, 2008 - just 6 weeks after his diagnosis. I had the "honor" of being alone with him when he passed at 2:01am. Everyone else had gone to bed and I had come with my family from out of town. Watching him breathe and then stop breathing was the worse thing. It was hard to watch him suffer and it was hard to let him go. I see the entire "moment" every night when I close my eyes to go to sleep - it's been 3 weeks and it is wearing me out and makes it hard to deal with daily things.

Any advice anyone? :(

Hi Kellylynn,

I am so sorry. You must be reeling with all this - it's an awful burden for you to bear. I can only console you with the usual platitudes but the reality is - they are true. There will be so many people coming out with these 'crap' sayings and you will smile sweetly and feel so ANGRY with them. "He is out of his suffering"... And you're thinking.. "Yeah! Yeah! But I didn't want him to suffer anyway!" And... "Time will heal"... And you are thinking "Yeah... I know it will but it ain't helping me right this minute!" There's so many emotions dancing around you: grief, pain, anger, resentment... and they're all perfectly normal and natural. I know I was numb when my father died - I was 19 years old and he was 63. I carried on in a fog - I was walking, talking, eating... but I wasn't really there. But, my darling, it will get better... honest. Been there... done that... got the tee-shirt! (It didn't fit because it was made for a size 12 and, well...? )

Love and hugs,

KateG

Dear Kelly Lyn

I am so sorry to hear your news it is an awful time I know. Our thoughts are with you and your family.
God Bless you all
Tina
xx

Hi Kelly Lynn,
So sorry to hear that you lost your Dad. It sounds like he had a calm, peaceful, dignified death; well done to you and your family and carers for making it that way.
I'm a nurse and have seen several people die; the slow, seemingly strange breathing is just him sighing away from the world.
Much love to you and yours,

Hello Kellylynn, so sorry to hear about your dad.
I understand how you keep seeing the 'moment' again and again. My view on it was that no-one should die alone, the greatest gift I could give anyone was to be with them at the very end end. I felt I kept seeing it over and over because it was the parting, the end of suffering. It was my minds way of making me familiar and accustomed to the parting.
Letting go takes a while, it happens gradually not all at once and we all go through it differently. Even now six years later I still sometimes turn around and look for my best friend to tell her something only now it doesn't make me feel sad , just miss her.
My dad has just been diagnosed with terminal bowel cancer, so I tread this awful path again.
Bless you and I hope you find some peace, I would be very comforted if I knew I wouldn't die alone, so few are that fortunate.

Hello Kellyann I do know what you are going through, I lost my husband on the 12 August 2008 12 weeks ago i was with him when he died and he died peacefully it is true the last few breathes are the final part and they are in no pain that is the final part of letting go.

my husband was 57 and I am 50 he was diagnosed with lung, bowel,spleen,liver cancer in February of this year I miss him terribly but I would not have wanted him to die alone i am glad I was with him and could hold his hand and say goodbye. My father passed away in June of this year and sadly he passed away alone as I was 60 miles away when he took a turn for the worse by the time I got there he had passed away I missed saying goodbye to him by only 15 minutes and knowing I had the chance to be with my husband was of great comfort to us both. I feel good some days and at despair others I do not have the image of my husband passing away only the image of peace although we all take different things with us when someone dies I would not have changed it.

I hope you soon find that the image you have begins to be a positive one and all your memories good, I know mine are but it will take us both a time to heal a very long time but we will.

Take care jayne xx