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Lung cancer spread to brain - any knowledge / experience?

Hi all,

A couple of weeks ago, my wife and I were sitting watching TV at about 9:30 ish when I had a phone call from my Dad, saying he was outside and that he had to come in and see me immediately. He proceeded to tell me that they had an explanation for what we all thought was a trapped nerve in my Mums back. The CT scan showed she has lung cancer and that it has spread to her brain. The reason her back hurt is that the tumor in her lung was indeed pinching a nerve in her back. She is 56. Dad has explained that there is nothing that can be done in terms of a cure, and that any treatment would be to try and manage it. We have no exact idea of how long she has - I have tried to do my own research on the internet, and it seems that every case is different. I have never had cancer affect me or my family like this before, and have realised what a sledgehammer blow it can be.

- How did people go about supporting their other parent (my Dad in this case). He met my Mum when he was 13 and is a broken man. I don't know what I can do for him?
- Explaining the situation to little children. I have a 3 (nearly 4) year old who is just getting the the age when he knows something is wrong. My wife and I try and hold it together in front of him, but he knows his Grandma isn't well. What have others done?
- And generally, any tips for coping with the stress and worry? I am not sleeping at all well, and the main issue is that I am biting peoples heads off at every opportunity at the moment, and that cant carry on. At work yesterday, someone was being a bit of an w*nker and I proceeded to lay into him big time.

And finally, Mum smoked 20 a day since she was 18, and her biggest regret now is starting up again after I was born. If you have a similar habit, and are trying to give up (or even if not) and especially if you have a family and kids. Please take a second to think of your future and theirs. It isnt worth it. It is too late for my Mum, but it may not be for you.

Lots of support going out to anyone else in the Charlton Life family who may be going through something similar. This is all too common a situation.
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Comments

  • edited June 2012
    Terrible news, my heart goes out to you all.

    I would strongly advise that you speak to McMillian, the Cancer Trust or other similar charities who will have advice and guidance and maybe able to give you names and numbers of counsellors etc. The hospital should have addresses etc.

    Can I also suggest that you go and see your own GP and explain the situation. You are under stress (completely understandably) so don't be afraid to admit it and deal with it. Could be drugs or counselling or just advice but take what is on offer. I know you are thinking about your mum and dad but you also need to look after yourself so you can be there for them.

    I would suggest that you also have a chat with your manager and/or HR manager about what is happening. It would mean that they understand why you might be acting out of charecter at work (shouting at colleagues) and why you might need time off at short notice. They might be able to give you some time off or flexible working. They, or you, could also tell your work mates.

    Good luck, thoughts are with you.
  • Terrible news, my heart goes out to you all.

    I would strongly advise that you speak to McMillian, the Cancer Trust or other similar charities who will have advice and guidance and maybe able to give you names and numbers of counsellors etc. The hospital should have addresses etc.

    Can I also suggest that you go and see your own GP and explain the situation. You are under stress (completely understandably) so don't be afraid to admit it and deal with it. Could be drugs or counselling or just advice but take what is on offer. I know you are thinking about your mum and dad but you also need to look after yourself so you can be there for them.

    I would suggest that you also have a chat with your manager and/or HR manager about what is happening. It would mean that they understand why you might be acting out of charecter at work (shouting at colleagues) and why you might need time off at short notice. They might be able to give you some time off or flexible working. They, or you, could also tell your work mates.

    Good luck, thoughts are with you.
    Can only agree with Henry....XXX.
  • I guess I'm lucky that I've not had to go through this but just wanted to express my sympathies for you and your family. Must be awful. Good luck!
  • Sorry to hear this. Good advice from henry. Been through this and know what you are going through.
  • What truly horrible news. I would echo very strongly everything HI has said. All I do know is that you shouldn't be hard on yourself, you are reacting normally to a highly abnormal situation so cut yourself some slack whilst you struggle to adjust and come to terms with what is happening. People are actually very forgiving and supportive once they understand what is happening, so if you can bear it, let your work colleagues know your situation, either directly or indirectly. The best way to support your Dad is just to listen to him and let him express all his emotions, for our family it was a case of cry together and laugh together. Good luck Damo.
  • I am still in the process of recovering from cancer. I will not go into too many details but will simply say that the very word 'cancer' is so emotive and still carries a dreadful stigma and induces visions of impending doom and death which is not associated with many other equally dreadful diseases.
    The disease often seems to affect family members and loved ones almost as much as the cancer sufferers themselves. Feelings of guilt and helplessness are all so common.
    The very last thing that your mother would want you to do is to suffer along with her. It will not be easy, but for your mother's sake as well as for the sakes of your other family members, your friends and probably most importantly yourself, you must try to .. if not 'accept' the situation .. at least come to terms with it and to offer constructive support and help to your loved ones.
    Easy said, difficult to do perhaps and I wish you and your family all the very very best during this bad time in your collective lives.
  • Terrible news Damo I went through a similar experience when my dad got terminal lung cancer it is a hammer blow. My experience with my Mum was that at first she seemed to bear up really well after dad died but then it all hit her a year later so keep a close eye on your Dad mate. Can't give any word of consolation I am afraid it is tough and that's all I can say.
  • Everything that has already been said.

    As you all know what is coming you have the chance now to lay down some everlasting memories.

    My personal preference would be tell your children no matter how young. They are much stronger than we give them credit for and are a great comfort when they know you are upset.

    My thoughts are with you at such a terrible time.
  • Been through the same thing with my dad recently so you've got my every sympathy. Can't add anything more to what Henry says, especially contacting McMillan who were brilliant.

    With regards to your little one, my advice would be as honest as possible. We told our 3 year old pretty much from day one that Grandad would always be poorly. It's difficult to explain the concept of death to someone so young but once he went, we told her that he had died, we would never see him again, but that we could talk to him. My wife is a teacher so has had to deal with similar situations and knew what not to say. Don't say that heaven is in the sky as some kids become afraid when they hear thunder etc, don't just say she's gone away as they can ask when is she coming back. It's also important not to say that being old was part of it as they see all adults as being old and can worry about you.
  • I really feel for you Damo. My Dad had cancer that spread from his stomach to practically everywhere. Unfortunately in our case there was no positive outcome, but I don't know how typical or atypical we were. In my Dad's case diagnosis came really late because for months his GP had insisted that it was a stomach ulcer and had done nothing more than prescribe various antacids - all to no avail.

    I think your question about caring for your dad is a really important one. Not just for him but for you as well; I have always had nagging doubt that I didn't do enough to support my Mum. In reality though, being a really stoical character she may not have wanted any more -but perhaps I could have done more to check. I know that she said she felt relieved when we finally went back home so that she could get on. What she did then, was to take herself to her bed for a fortnight; only emerging for the physical necessities. Based on this experience one practical thing I'd suggest is that you make sure there's plenty of ready meals and stuff, so that your Dad doesn't have to worry too much about feeding himself. Ultimately though, everyone is different so I guess the best thing is to talk to him and see what he want from you. Be aware though that he might not tell you everything as parents often worry about not being a burden on their kids.
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  • Feel for you DNS both my parents have had cancer (and no-one has lived a fitter life than them) and whilst the outcome for neither was fatal you don't know that at the time.

    Here are some tips I have learnt:

    Get their neighbours involved, my Dad found it very useful to be able to go to the neighbours and just have a cup of tea when it all got too much (the day my Mum came home from hospital the roof fell in on her in bed) and having an escape route was vital to avoid my Dad having a break down. They also cooked him casseroles and stuff to ensure that he looked after himself.

    Actually that leads to the other point, you will almost need to look after your Dad more than your Mum. He wil look after your mum but he wont look after himself.

    The kids thing is tricky. When my Dad first came home with no hair my 3 year old nephew screamed. We had warned him that grandad was sick but hadn't warned him that his appearance would change (he looked like he'd aged 20 years) so explain that to them as well as the sickness.

    Spend some time alone with your Mum. This allows your Dad time on his own but also allows you to have some quiet time with Mum. Be open and honest with her about feelings as well as practical things. She knows what is happeneing so there is no point avoiding the elehpant in the room.

    Everyone deals with family crisis in a differnt way. If you have siblings don't expect them to deal with it the way you do. It is natural for some to not want to be near their parents when they are sick as it can be too much to deal with. Every reaction must be accepted. For me I kept myself busy with practical things at my parents, my older brother spent all his time looking up the illness and ways to treat it and my other brother avoided seeing my Mum as he couldn't take it. If it gets too bad try and sit down and calmly talk to them about why you feel they should consider different actions (they don't want regrets / must support your father etc). The same goes for your Dad, don't expect him to react the way you do.

    And be careful of internet research - it is often the worst case scenario.

    If I think of anything else I'll let you know but feel free to PM me.
  • Good post DRF, a lot more positive than mine which I'm afraid is one of those worst case ones.
  • Henry and DRF have pretty much said it all.

    Terribly sad news, thoughts are with you Damo
  • Sorry to hear of your terrible news.We had a similar situation with my Mum and lung cancer loosing her at 52.Mum and Dad had been together since about 13 or 14 and looking back I wish I had kept a closer eye on my Dad who basically gave up and faded away.
  • edited June 2012
    Stig, the stomach ulcer one is a ringer for my Mother's prognosis. For years our doctor (ex labour MP for Dartford) gave her tablets for stomach ulcers until it was too late.

    Unfortunately cancer seems to be coming more and more prevalent, or it just seems so to me as many friends or friends' family are suffering. Luckily the treatment for some types are good, as I have two school friends who have come through breast cancer, well one is coming through.

    Good luck Damo to you and your family, horrible situation.

  • My thoughts go out to you and your family at this sad time. I've been in a two similar situations in the past with both my mum and dad and I can only echo what others have said. There's some good advice here. The mistakes I made were I tried to do everything myself and I didn't take up the help when it was offered which resulted in a breakdown when my mum died in 1996. Therefore, make the best use of resources beforehand. For example McMillan or Eleanor Lions Hospices, GP and employer. And afterwards, Cruse bereavement counselling. Whatever happens, don't bottle anything up. It's good to talk. I wish you nothing but the best. Take care.
  • Henry and DRF have pretty much said it all.

    Terribly sad news, thoughts are with you Damo
    Ditto the above. Cancer seems to be effecting most people now either by virtue of the fact they have it or know someone that does.

    I lost my sister to Ovarian cancer when she was in her 50's so I know what you and your loved ones are going through so my thoughts are with you.

    If your family are offered the support of Mcmillan grab it with both hands because the care and support they offer is second to none and their nurses truely are angels without wings.

    I know we have never spoken before but If you need to talk about it PM me and I would be happy to help where I can.

  • Watching and listening to a friend recently who has just lost one parent and the other is terminal she's had real problems getting any support from McMillan whatsoever. The phone calls she went through to just even get a visit were very frustrating and she never got anywhere - just seemed to be one long line of red tape. I assume because they are a charity they are very stretched.
  • All I can say is my sympathies are with you. The most important thing is talking to people, family members, professionals, and as Henry said your boss and HR. You don't have to talk to everyone you see, just make sure you are talking to the people close to you.
  • edited June 2012
    All I can say for now, is that I am blown away beyond belief by the support and advice on this thread. I have a lump in my throat at my desk, so will have a proper read through at the weekend.

    Thank you so much everyone.

    What a site this is.
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  • Damo, so sorry for you mate and our thoughts are with you and your family currantly my Mum is back in hospital the third time in as many weeks. Pnemonia attacking the lungs and every other smoking related problem you can imagine. Your right its bad enough whats she is doing to herself, without what the family goes through. My wife came home from visiting yesterday, my mum had told her she just wants to go to sleep! Cant offer anymore advice than whats been offered, but if you want to have a chat and a beer. Give me a shout.

    Ray
  • So sorry to hear this. My family are going through the same situation with my sister in law who is only 37. Lungs to hips, breasts, bones and stomach at this stage. It is very very difficult.

    Henry's and DRF's advice is all good. Supporting one another is the case, inlcuding yourself. We Brits put on a brave face, stiff upper lip and all that all too often, but the truth is this sort of thing can rock you badly and you all need to be openly supportive and take the support you can get, whether that be counselling, open discussion on how you will support one another etc.

    Re kids, my sis in law will be leaving a little 7 year old behind and my two 5 and 7 who are close to their cousin and aunt and uncle. Kids pick up on two things from our experience so far, the tenseness and emotion of some of our interactions together and also their comprehension of danger ahead is more heightened than we expected. My 5 year old reacts better than the 7 year old, understandably as it is more matter of fact for him and you may find the same with your 4 year old. What we have done is reminded them that she is sick and that the doctors are trying to help her. They ask openly whether she will die and we tend to confirm that she is ill right now and that we can only hope she gets better. Macmillan suggested taking this approach, so that as things beciome a lot worse the child has started to mentally prepare for that rather than either freak them out by blatantly saying yes or lying by saying no and then it is a massive shock for them to bear.

    Think about how you will be able to support one another as much as possible and give your Mum some comfort by describing your intentions if you can. That in itself may release some of the weight on her psychologically.

    I'm just so sorry that you are experiencing this and my thoughts and prayers are with you.
  • I've no expertise to add but my thoughts and prayers are with you.
  • So sorry to hear this. My family are going through the same situation with my sister in law who is only 37. Lungs to hips, breasts, bones and stomach at this stage. It is very very difficult.

    Henry's and DRF's advice is all good. Supporting one another is the case, inlcuding yourself. We Brits put on a brave face, stiff upper lip and all that all too often, but the truth is this sort of thing can rock you badly and you all need to be openly supportive and take the support you can get, whether that be counselling, open discussion on how you will support one another etc.

    Re kids, my sis in law will be leaving a little 7 year old behind and my two 5 and 7 who are close to their cousin and aunt and uncle. Kids pick up on two things from our experience so far, the tenseness and emotion of some of our interactions together and also their comprehension of danger ahead is more heightened than we expected. My 5 year old reacts better than the 7 year old, understandably as it is more matter of fact for him and you may find the same with your 4 year old. What we have done is reminded them that she is sick and that the doctors are trying to help her. They ask openly whether she will die and we tend to confirm that she is ill right now and that we can only hope she gets better. Macmillan suggested taking this approach, so that as things beciome a lot worse the child has started to mentally prepare for that rather than either freak them out by blatantly saying yes or lying by saying no and then it is a massive shock for them to bear.

    Think about how you will be able to support one another as much as possible and give your Mum some comfort by describing your intentions if you can. That in itself may release some of the weight on her psychologically.

    I'm just so sorry that you are experiencing this and my thoughts and prayers are with you.

    Pavo, my thoughts heading straight back your way too. A 37 year old with children of her own is a horrendous situation.

    Please everyone, feel free to drop in any of your own experiences. We can all learn off each other here hopefully.
  • Damo

    your post touched a real heartstring with me ,as like others i went through exactly the same thing with my father(the symptoms are nigh on the same) as you are going through with your mum .i know every situation is different but the prognosis isnt good .I sincerely hope that your mum isnt in too much pain right now and that your dad ,you and your family get all the support they can .These things are obviously a life changer for the whole family .The only advice that i could pass on is that whilst you want to support everyone (the right thing to do) is that you too have feet of clay,share the caring burden as much as you can and share your thoughts and feelings with those that are close to you ,try not to be a stiff upper lip man about it (it wont help in the long run).Macmillan are very good 13 years on from my experience i still try to raise money for them but lean on others in your family not just for physical help but emotional and spiritual support ....especially if the worst happens

    i hope sincerely you and your family get the best possible outcome ..
  • Sorry to hear it mate, I lost someone I cared deeply for through lung cancer. Lyn was diagnosed with lung cancer in November 2008, she passed away in December 2008 at the hospice In the Weald. I was offered counselling at the hospice because of my young age at the time and what I had gone through I declined and really regret it now. My adivce would be to go see someone and speak about what you are going through.
  • Sorry to read your news -

    Macmillan did then and still do help me - they helped me through some tough times --sharing my thoughts and just listening and chatting - they also told me what to expect and how to react -- i would have been lost without them


    My thoughts and prayers to you and your family.
  • So sorry to hear of your situation, Damo - and that of several others on here. Such a difficult thing to go through. There is already some really good advice here -I don't feel I can add much. I would just reiterate the point about everyone dealing with it differently/ in their own way, and trying not to be judgmental about that with others close to you - be as tolerant as you can of how others behave in dealing with it, so that you can all support each other. And do look after yourself as well. Thoughts very much with you.
  • I offer no experiences, just my prayers to you all.............
  • I lost my mum to cancer when she was only 47, her second bout. I was only 20 at the time, I had a 6yo brother - going through that tends to turns you into a hypochondriac!!

    Medicine has come along way in the last 20 or so years - good luck Damo I know what you are going through, try to stay strong for your family & look after your own health to.
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