Terminal cancer

LegacyUser

Hi all,

2 days ago I was told the news I never thought I would be told. I have terminal cancer with 2-3 years life expectancy.

Obviously my life has been turned upside down but I have not told one soul of my affliction as of yet and have continued on as normal with work etc. I have long suspected there was something wrong with my body and to be honest, I knew it was cancer, the news wasn't a huge shock to me. It's really strange but I have excepted my faith but the only thing that is really hurting me is the fact that I'll have to tell my family and friends.

On one hand I want to wait as long as possible before I tell them so their lives arn't devastated for another few weeks, I was thinking of going to my first chemo without them knowing and when eventually they realise I look physically unwell, break the news then. Then on the other hand I feel guilty for depriving them of such information. I'm 22 years old and in my eyes, for every day my parents, brother and sister don't know of my situation, the better lives they will lead, if it's a few less weeks of hurt for them, I think it's worth it

I know it's a fairly warped logic but I just want them to be as happy as possible, for as long as possible, because I know the news will hurt them more than it hurts me

Can you see where I'm coming from here? What would you do in my situation

p

Sorry to hear about your situation. I don't have any direct advice I can give you on this matter, but I'd take posting on this forum. http://www.boards.ie/vbulletin/forumdisplay.php?f=862
There may be people there who have more direct experience who could advise you from their own experiences.

sparkthatbled

Very sorry to hear this, OP. Wishing you all the best. I think you need to tell people what is going on. I'm sure they will want to spend as much time as possible with you, and with the support of them rallying around you, who knows? Maybe all is not lost. I've heard of plenty of cases of people beating cancer after being given a time frame.

Hope it goes ok for you, wish i could be more helpful/insightful.

LegacyUser

OP, I have direct experience of this. I lost my father to terminal cancer five years ago, we knew he was very sick for 2 months and I spent hours googling to figure what he may have [assuming he didn't know] but he only confirmed a month before his death that he had terminal cancer. I found out when during a routine hospital check-up the doctor mentioned the word 'chemotherapy' and it took a lot of pressing of my father to get the details from him later that night.

To this day, my mother, siblings and I wonder all the time how long he knew [probably 3 years, we believe], and why he didn't confide in us so we could have supported him properly. I have many regrets of stupid things I said, stupid teenage mood swings I took out on him that I could have held off on had I known it was causing him unnecessary stress in his secret situation. I feel we could have all dealt with it better if we were in it together as a family, I think back on happy times we shared together in his last year, look at photos of him standing there probably forcing a smile, and I wonder what he was really feeling. Instead, one day he was gone and my family was still left with the shock of 'He has CANCER', rather than having had time to accept its onset and deal with his loss.

Just this morning I woke up after another nightmare where he was dealing with the situation alone, and I woke up thinking 'why did he not tell us? Why did we not get to know about it the day he was diagnosed, why did he play the martyr?'

He never did it to hurt us, he was a very strong, brave man, but it does hurt. My mother was never good at dealing with anything and I'm sure the only reason he kept it from us was to prevent her bad nerves from going. But the news hit as a much greater shock in those final weeks which were all taking place in a hospital, we never got to appreciate the happy times at home except with hindsight.

In November, a cousin I am close to finally confirmed to me that he is terminally ill, with a max of 3 months to live. He had deliberately kept it from my family as we had lost my father to the same cancer. He wanted things to be 'normal' for as long as possible.

I haven't said it to him, but I am extremely resentful of his decision to keep it from us. I can't help but feel angry with him for not telling me sooner, for thinking that we couldn't handle it, for keeping something this big from us, for sneaking off to hospital appointments without us being able to keep him in mind and offer support.

We enjoyed many fun events together throughout the summer and at this time I find myself reacting with anger and feeling as though his joy at those events was false, that it was all a farce, that inside he was dying but he was playing along for my sake - so I wouldn't know his secret.

I know my anger is caused by the cancer, and it ought to be aimed at the cancer [and I assume it will be when he's gone] but right now I do feel a tinge of anger towards him for doing the same thing as my father did - not telling.

This decision is yours OP, and only you know how your family will react, and how supportive they can be to you during this horrible time. In my cousin's case, as a young man he's wanted to get on with life as normal as possible until the time comes and has just started a new job so it has been in his best interest to not tell everyone, he's now keeping it within the family to avoid being driven insane by random people asking "How long? How are you feeling?" etc. He didn't want to be seen as just 'the guy with terminal cancer'. He's still interested in music and art and cars, just like he always was and if he was to tell everyone now, every discussing will be focused around cancer.

OP, I really would URGE you to tell your direct family, because it does hurt to be left out of the loop in something like this, and while you have their best interests at heart, five years later there isn't a week that I don't have a dream about my father suffering alone and wake up hurt and angry that he never told us what he was probably going through for three years. The first question your family will likely ask is "When did you find out?" and I think they'll be upset to hear you went alone to an appointment two days ago, never mind 2 or 3 years earlier.

I'm very sorry that you've had to get this horrible news, but try to live your life as normal and to the best of your ability for your remaining time - don't get too caught up on specific death dates. I recall two different men [classmates of my father] attending my father's hospital bed in his final days telling me that it was terrible that such a young man was being taken from us when they ought to have 40 or so years left to live. Both were dead within 2 years of my father; one from a brain aneurysm and the other from a car accident. I don't think we can really put a 'time' on something like this, and it's probably best not to focus on it entirely. I know there is a lady who posts here who was given x amount of years and is many years past her 'date of death' now. She will probably respond to this also.

There are regularly people who die in car accidents or fires who happen to have had an undiagnosed brain tumour or other cancer when the autopsy is done.
They could have been diagnosed, pre death, and lived with the weight of the world on their shoulders only to be taken far sooner than their predicted death time.

That's just cruel, harsh life. We don't know what's around the corner and chances are you will attend many unexpected funerals for others in your life in the next few years long before your own.

Hang in there, OP. And the very best of luck with your future.

MysticalSoul

Sorry to hear that OP.

From someone who was kept in the dark about a family member's illness, I have to say being kept in the dark hurt me more than knowing could have ever done. I knew my aunt was unwell, but anytime I asked about the results of the tests I was brushed off. It was only at the funeral I heard that my aunt had had cancer. She didn't loose her hair etc as by the time she was diagnosed it was too late, and she was ready to go. After a few months in hospital she passed away.

Azureus

If I were you, I would tell your friends and family the news, and in much the same way as you have put it across in that post. For 22 you seem very mature and accepting of such devastating news, and be clear that you dont want pity from those around you and Im sure people will accept that. I think your own attitude will make the news easier for those around you to accept it aswell.

Allow your friends and family to make the most of their time with you for the next few years-giving them the news early will prepare them for the inevitable deterioration that will happen to your body through chemo-imo it wouldnt be as fair to let them see you get sick without that mental preparation. Itll make it easier on everybody-knowledge and understanding of your condition is key and without them knowing they cannot prepare.

I truly hope something can be done for you.

larrycurlymoe

OP, my heart goes out to you. I have been in a similar situation myself. When I was 14 I was told I have terminal cancer and would be dead within a year, the situation deteriorated quickly and I was given a few weeks max to live. That was 9 years ago and I'm still here and have just started a postgrad degree. I've had long battles and was told several times between then and now that I was likely to be dead within a short time- usually a year max. I still have my disease but it is now less of a problem- it has been stable now for a while and I intend to be around for a good bit longer. I don't want to give you false hope as every cancer diagnosis is different. I can only give you advice that has helped me through very difficult times.

You have been told your cancer is terminal and your chemotherapy will almost definitely be heavy dosage stuff. You should tell them BEFORE you have your first chemotherapy. It will be a less of a shock for them than if you tell them after you have had your first chemo.

The fact is you wont be able to, you need as much support as you can get. You will go as pale as a ghost, your body will be messed up on it- hormones etc, you may lose your hair depending on the type of chemo.

As i was in Crumlin when I was first diagnosed I had my Mum with me all the way, when I was told bad news, so I don't know what its like to be told that news by myself but you should tell people, especially your loved ones. I did have to tell some people though and it is very hard but after you tell the first person it gets easier. Tell the people you are closest to first. If you have a group of friends it might be better to tell them as a group as it gets a lot of it out of the way. The more people you tell the easier it is to come to terms with what you have.

People react in very different ways to you telling them that you have cancer. Everyone who knows me has been supportive. There are some people who I've known became a bit withdrawn towards me when I told them or they found out. They didn't quite know how to deal with me and that can be quite upsetting but it is not a deliberate thing against you. They just don't know how to deal such a big thing. Others can be almost afraid to say anything or ask anything about the cancer. These people are both good and bad- its good to be able to talk to people and talk about everything but cancer and that gets your mind off things but at other times it can be frustrating as you know they are avoiding the massive elephant in the room.

One very important thing is always try to have someone- a loved one, next of kin etc- with you at the hospital especially when your meeting a consultant as it is good to have an extra mind with you- I tried meeting a few consultants by myself when I was 18 or so and it wasn't as successful- having the other person there as support and they can remember things that might pass over you. And it is especially important to have someone who can give you a lift home from treatment, scans etc because you will be drained after a day in hospital.

There are going to be days when you feel angry, there are going to be days when your upset but on those days you just have to get angry or cry, let it all out. Because bottling it up in you is not good.

I know this bit of advice is going to sound a bit odd considering what you've been told but be positive and do things that you enjoy. If you have a positive attitude you can get through much more yourself but it will also help those who are around you. But don't go putting on false happiness or false positivity because if you hide how your feeling that will hurt you and those around you. If someone asks you how you feel don't be afraid to tell them your feeling pretty terrible. There have been times when people asked me how I was and I was thinking how do you think I feel but a lot of people just don't know what to say. As for the enjoying yourself you have to do things you find enjoyable. For example put on a film on an ipod or computer while your getting your chemotherapy. Comedy films are great for bringing a bit of cheer. Also do stuff with people you love and care for that is fun. These happy times can help you through emotional pain but it is also very important for those you close to you, That you did stuff you love with those you love.

From talking with different people in wards in the current hospital I attend people take the news differently. You have the right attitude in accepting what has happened. There will be days when your angry asking 'why does this have to happen to me' but that is normal. Some people have found help in religion, I would be one of them. I know other patients have found it hard to believe in a god in such times- I had that attitude sometimes myself but on days when I was afraid and on my own in a hospital bed at night faith got me through. But when there was someone about it is always very good to talk to them.


I'm sorry if my advice is all over the place but I'm just trying to think of everything that I found helpful. From your post you seem strong, you've accepted that this has happened. Try and stay strong mentally, because physically you will deteriorate but once your mentally strong that almost makes things easier to cope with. You'll be in my thoughts and prayers. Good luck

gogglebok

OP, your logic isn't warped at all. It's very generous.

I don't know what is right for you to do, but I have a young brother. If he was going through what you're going through, I would do anything I could to be there with him. I would want to know.

Good luck with everything.

tinkerbell

Oh god OP, my heart goes out to you. I'm so sorry to hear what you are going through I would recommend that you tell your friends and family as soon as possible, you don't want to go through this by yourself. Chemo is a very aggressive treatment, you need support around you to keep your spirits up and keep you strong. I am certain that your family would rather be able to support you as soon as possible rather than find out months later. I wish you all the best, and hope your treatment goes well, miracles can happen. Best of luck, you will be in my thoughts.

I am a friend

OP I am very sorry to hear about your illness and wish you all the best...

I will buck the trend here and stand up for your decision not to tell your family yet... Some people wont understand but I am the kind of person who is very self sufficient and prefers to deal with issues by myself. I have not had your news to deal with but I have been in hospital and wanted no one with me, have lost a sibling suddenly and am dealing wtih it all by myself as I dont want other people involved. it may seem strange to some but I can handle certain of lifes pressures better when i dont have other people to worry about (if that makes sense)... I know i am not comparing like with like here but in fairness, its your 'news' so dont feel any pressure to tell anyone before you are ready... Best of luck.

yermandan

Sending you supportive and caring thoughts your way OP. Please use this thread as a form of support while you decide what to do about telling your family.

Best of luck

larrycurlymoe

I am a friend wrote: »

OP I am very sorry to hear about your illness and wish you all the best...

I will buck the trend here and stand up for your decision not to tell your family yet... Some people wont understand but I am the kind of person who is very self sufficient and prefers to deal with issues by myself. I have not had your news to deal with but I have been in hospital and wanted no one with me, have lost a sibling suddenly and am dealing wtih it all by myself as I dont want other people involved. it may seem strange to some but I can handle certain of lifes pressures better when i dont have other people to worry about (if that makes sense)... I know i am not comparing like with like here but in fairness, its your 'news' so dont feel any pressure to tell anyone before you are ready... Best of luck.

While thats very sad about your sibling, and you have my sympathies, you clearly have never dealt with something like a terminal cancer. You can't keep something like chemo and dying a secret. No matter how strong or tough you think you are you will not be able to deal with such a thing on your own. Everyone has to deal with cancer in their own way but the way you suggest will do neither the OP or their family any good.

OP if you tell your family and you feel they are being too much for you or crowding you, just tell them to back off for a bit. They will understand that more than not telling them.

thefeatheredcat

OP it is admirable that you want to spare your family the grief and let them enjoy the happiness that they have. I truly admire that you want to protect them from it and manage, even for now as independently as you can.

One of my uncles in my extended family was diagnosed with a terminal cancer. It was discovered by accident through a physical discomfort he experienced and was checked out by a doctor. He died a few months later. It was a huge shock to all the family when he told them, especially my grandmother. My cousin (his son), was fairly young at the time and while he managed to struggle through and still come out the other end, any time he experiences a physical discomfort he worries himself...whether it was from the suddenness of it or because it generally wasn't talked about that openly, I don't know. He's a great kid that his father would be proud of, but having spent time with him over the last year I know it still effects him.

I think about a couple of years passed and another uncle of mine in that same extended family was also diagnosed with a terminal cancer. It was caught in time in that while it isn't curable, it's treatable in management of it. The whole family know about it, and it is talked about openly and the initial time frame he was initially told he has outlived.

The difference between the two uncles is that in the case of my second uncle, everyone has had time to accept it and to manage their emotions on it. It has brought the whole family closer together (although squabbles and arguments still happen), and yes, my uncle does try to get on with life as normal. He does get visits in hospital and everyone is aware and understanding if his siblings should have to drop what they're doing and see him. at the same time, while he has lived away and was generally not too involved with family stuff, he has actually become more involved and in the loop about what's going on in the family.

I feel that if he had kept quiet about it or just kept it between himself and his partner he wouldn't have received half the support or care that he has. They both know that if he should take a turn for the worse, the people that matters the most will be there in a heart beat. And while the time he has left, nobody is certain of, and I'll be honest and say for any trips or plans family make, an action plan is always made should they get the phone call. So it is part of their lives, of all their lives.

As it stands right now, as my folks were on the phone to members of the family today, there's concern and a bit of worry as to how his partner is handling it all as things aren't too good right now. So she has that support too. They could be viewed as a bit over-sensitive or over-protective to keep an eye on how she is, but it is some comfort to my uncle in a way too.

I think for you personally it is a hard decision. Maybe speaking to others who are in a similar situation can give you the guidance that you need. It is a decision that will impact them regardless of when you tell them. It's not an easy road from what limited and indirect experience I have, most of it I only know from 2nd and 3rd hand versions of conversations, but it is not a road you need walk alone for any length of time. I don't think your family would want that for you, somehow.

Ellie2008

Hi OP,

I am so very sorry re your news. My Dad has terminal cancer, since the very first day he was diagnosed he has always been open with us, maybe not 100% but a lot and I think it has really helped me, I'm a good few years older than you but to my shame have only matured recently and was always dumping my problems on my parents and being demanding etc., and further to my shame I threw a stupid tantrum about using a car recently but I have been a lot more caring and feel I have been given a chance to develop a relationship with my father so I think if he hadn't told me as soon as he could and I had found out that I had been very selfish in my dealings with him when he was dealing with terminal cancer I would have felt terribly guilty. I think your parents especially would want to do everything they can, of course only you know your own family.

The second thing I wanted to mentioned was that my father was told his prognosis was two years ish (this was the bit he didnt tell us, I overheard my mother on the phone) and that was certainly more than two years ago. He is very into diet, exercise and alternative treatments and I think that has helped. Also ask your doctor about drug trials.

Take care of yourself OP, and as someone else mentioned I hope you avail of counselling. You sound like ten times the person I am. xxx

LegacyUser

Thank you all so much for all you're kind words and advice. It's heart warming to know that people whom you have never met can have such caring and positive things to say, and take time out of their lives to write long, time consuming posts to help comfort me

A few posts have really struck a chord with me in this thead, no more so than xrxox's. That post made me realise that if someone in my family was suffering with a similar disease, I would be actually very hurt and even bitter if they didn't tell me of their ordeal. There are still things saying 'don't tell them yet' in my mind. My sibling for example, is heading off travelling in the near future and I wouldn't want them to think they'd have to stay by me and miss the trip of a lifetime. As larrycurlymoe's thoughtful and hugely inspiring post illustrated though, I could be here for a few more years than expected so I'd encourage him go on his trip

As my parents were the ones to bring me into this world, after a lot of personal deep thought and much consideration of posts in this very thread, I have decided to tell them, maybe as soon as tomorrow. They have been the best parents a son could ask for and have been the rock in my life since day one, they've stuck with me through thick and thin and I don't see why this should be any different. As I write now, it is the first time where my emotions are getting the better of me. I realise there will be a lot of moments throughout my ordeal like this and this further convinces me that telling them as soon as possible is the best thing for everybody. Having someone there for you in times of need is hugely important and I know they will be backing me through this 100%

There are so many things on my mind right now, I will log off for another day and hopefully muster up the courage to break the news tomorrow or the next day

I will keep this thread updated and strangely enough, even writing these things down help me a lot, for reasons I'm not fully sure of

Again, thank you for all your support and kind wishes. As Christopher Hitchens said in his interview before he died of cancer, reading supportive messages from people you don't know is a very nice feeling, it sort reestablishes, in your own head, a certain faith in humanity and that we are all, at heart good people

Thank you al for your kind words

Ainekav

Hi OP,

I'm very sorry to hear what you are going through.
I am going to try and remember you when I (frequently) get upset or annoyed about trivial matters, and remember your strength and positivity.

I would also encourage you to tell your family so that they can support you through this.
Your brother will probably want to stay home - and If I was you I would let him. To look at it from his side, he will regret going away (which he can do later on) instead of being with you in your time of need.

The very best of luck and you'll be in my thoughts
xxxx

I am a friend

Op am glad you have come to a decision about telling your family. Will be thinking of you and wish you all the best.

I am a friend

larrycurlymoe wrote: »

you clearly have never dealt with something like a terminal cancer

I stated that I was not comparing like with like and understand that very well but I dont think anyone should be pushed into telling people before they are ready.... Its works for some but not for all and that was my point.

Beruthiel

op1 wrote: »

hopefully muster up the courage to break the news tomorrow or the next day

My heart goes out to you OP, you are so very brave and thoughtful.
You are doing the right thing by telling people.
Speaking as a parent myself, I would want to be there for my child, helping them any way I could through such a sh!tty time.
You need someone to lean on, it will be good to let the people who love you be there for you.
Best of luck and take good care of yourself.

the_antagonist

Very sorry to hear about your situation OP.

What you should do I'm afraid, only you can decide.

If I found myself in your situation, and it was truly terminal, then I'd do my very best to limit the burden and pain to my loved ones while at the same time enjoying my last few years. Don't take that as advice, it's just my idea of what would be right for me and mine.

fluffybiscuits

op1 wrote: »

Hi all,

2 days ago I was told the news I never thought I would be told. I have terminal cancer with 2-3 years life expectancy.

Obviously my life has been turned upside down but I have not told one soul of my affliction as of yet and have continued on as normal with work etc. I have long suspected there was something wrong with my body and to be honest, I knew it was cancer, the news wasn't a huge shock to me. It's really strange but I have excepted my faith but the only thing that is really hurting me is the fact that I'll have to tell my family and friends.

On one hand I want to wait as long as possible before I tell them so their lives arn't devastated for another few weeks, I was thinking of going to my first chemo without them knowing and when eventually they realise I look physically unwell, break the news then. Then on the other hand I feel guilty for depriving them of such information. I'm 22 years old and in my eyes, for every day my parents, brother and sister don't know of my situation, the better lives they will lead, if it's a few less weeks of hurt for them, I think it's worth it

I know it's a fairly warped logic but I just want them to be as happy as possible, for as long as possible, because I know the news will hurt them more than it hurts me

Can you see where I'm coming from here? What would you do in my situation

Very sorry to hear about the cancer. Accepting the news is the hardest part, trying to accept what is happening to you and a possible end result means the mind just churns and churns. The Irish Cancer society have nurses who offer counselling to people and if you are a man there is men against cancer who do excellent work.

http://www.cancer.ie/

http://www.irishhealth.com/psg/mac.html

I got diagnosed 8 years ago with testicular cancer but caught it early. Saw the film 50/50 a few weeks back and it was like a shared experience. I wish you the very best a chara.

ennis81

So sorry for your troubles, heart goes out to you and your family. You are in my thoughts and prayers xxxx

gazzer

OP, my heart goes out to you. You are a very very brave individual.

larrycurlymoe

OP its good that you've decided to tell your parents. As i said once that first person is told it gets easier- it is still daunting telling a person but once you have the experience of telling one it gets easier. Your emotions are going to be going all over the place and thats completely normal. Support from the start is important. Don't be afraid of telling people you trust how you are feeling. There will be a lot of days when you feel like just crying non-stop and its times like those that you will need someone there for you.

Your in my thoughts and prayers. As you said reading the messages of support is a good feeling; it might be an idea to print off the thread, I have kept every card and message I received over the years. They mean so much to me and they were a tremendous source of encouragement for me, just looking at a message of support can lift your spirits.

Stay strong and good luck

saa

This is going to sound bad and I don't want it to really
but I can't get this out of my head, I read this and think
is someone having us on this can't be true because in my reality
it is incomprehensible the bravery you hold in the situation you've found yourself in
and the amazing attitude you have
and I just want to give you hugs even though I don't know you,
I just want good things for you and I agree with previous posters counseling would
a good option to consider
All of our love xoxo

crazygeryy

op1 wrote: »

Thank you all so much for all you're kind words and advice. It's heart warming to know that people whom you have never met can have such caring and positive things to say, and take time out of their lives to write long, time consuming posts to help comfort me

A few posts have really struck a chord with me in this thead, no more so than xrxox's. That post made me realise that if someone in my family was suffering with a similar disease, I would be actually very hurt and even bitter if they didn't tell me of their ordeal. There are still things saying 'don't tell them yet' in my mind. My sibling for example, is heading off travelling in the near future and I wouldn't want them to think they'd have to stay by me and miss the trip of a lifetime. As larrycurlymoe's thoughtful and hugely inspiring post illustrated though, I could be here for a few more years than expected so I'd encourage him go on his trip

As my parents were the ones to bring me into this world, after a lot of personal deep thought and much consideration of posts in this very thread, I have decided to tell them, maybe as soon as tomorrow. They have been the best parents a son could ask for and have been the rock in my life since day one, they've stuck with me through thick and thin and I don't see why this should be any different. As I write now, it is the first time where my emotions are getting the better of me. I realise there will be a lot of moments throughout my ordeal like this and this further convinces me that telling them as soon as possible is the best thing for everybody. Having someone there for you in times of need is hugely important and I know they will be backing me through this 100%

There are so many things on my mind right now, I will log off for another day and hopefully muster up the courage to break the news tomorrow or the next day

I will keep this thread updated and strangely enough, even writing these things down help me a lot, for reasons I'm not fully sure of

Again, thank you for all your support and kind wishes. As Christopher Hitchens said in his interview before he died of cancer, reading supportive messages from people you don't know is a very nice feeling, it sort reestablishes, in your own head, a certain faith in humanity and that we are all, at heart good people

Thank you al for your kind words

There are better people than me in here to give opinions on your situation so I will let them do that.
I'm just here to wish you every good wish that I have and I hope you find peace in your road ahead.
You ll be in all of our thought s I'm sure.

theg81der

Op I`ve been watching your thread and can`t stop thinking about you.
The only thing I can say is I`m so sorry, its not fair. I`m glad your telling your family they need this time with you and you with them. Don`t give up thou please fight, your 22 - try anything there are alternative treatments, remain pro active and positive - you family will help with this also.

Good luck xx

The Princess Bride

OP- my heart goes out to you and I can't imagine what you're thinking right now or how you're feeling.
There is no right or wrong way to deal with this news,
remember-you're probably still in shock, even if you knew deep down something was wrong,it's still the last news anybody expects to hear,especially at 22.

The most important thing to know is that there is support out there for you and your family- you don't have to go down this road alone, and you shouldn't have to tell them by yourself,if you don't want to.

I agree with Fluffybiscuits post re: www.cancer.ie ( 1 800 200 700 )
They can tell you about free counselling servies in your area.
There are also support groups all around the country- people in the know who are there for you and yours-if you want.
I wish I could say or do something more useful-I'll be thinking of you.

Take care you.