All New to Me

Hello.  My name is Phil, and I'm 69 years old.  My wife, Pat, who is 67, was diagnosed with lung cancer in March, and that's when everything changed.  About a week after diagnosis, she developed a blood clot in her lung, was rushed into hospital, nearly died, and was only saved by the skill and expertise of wonderful hospital staff.  She started chemotherapy, but was plagued by side effects - and it didn't work.  We are now waiting for her to start a short course of radiotherapy to alleviate the pain in her back, and then, if she is strong enough, her oncologist will consider second line chemotherapy.  We have been told the chances of this working are small - about 1 in 10.  But I don't think we will ever get to that because she is too weak.  We are getting support from the experts, as well as all the medication we need.  When I look around the living room, it seems that we have more drugs, pills, and potions than Boots.  I suppose that my reason for being on here is to 'touch base' (I hate that expression) with people who know what we are going through.  Friends and neighbours are very kind and sympathetic and make all the right noises, but they don't know what it's like.  That's partly my fault.  When asked how I am, I always say that I'm OK.  I come from the post war generation where showing emotions was considered a weakness.  Stiff upper lip, spirit of the Blitz, and all that stuff.  My wife is very brave.  She has taken the poking and prodding, the blood tests (she has a real phobia of needles), the CT scans, bone scans, biopsies, and everything else, and kept smiling through it all - including the injection I have to give her each day to keep the blood clots at bay.  I don't think I could have borne it so well, if at all.  She sleeps a lot these days.  Now she's having difficulty getting up the stairs to bed, but we have a stairlift coming in the next week or so, so that should help a lot.   She doesn't have much appetite, and it's difficult to get her to take nourishment.  Sorry to go on.  I usually deal with any problems myself without bothering other people.  But this is different.  It feels as if we are the only ones going through this, but I know there are thousands out there in the same boat.  For the first time in my life, I feel the need to unburden myself, and to ask for help and advice from those who really know what I, and, more especially, my wife, are going through.  Thank you for reading this.

  • Hi, Phil, and welcome.  I am so sorry for what you are going through.  I have cared for my mum and brother with this awful disease and now have incurable cancer myself.  I am about the same age as yourself and, yes, you are right about how we deal with feelings.

    I remember when I came out of hospital and was told I had to inject myself in my stomach for 28 days, I nearly fainted with fear.  I live alone so there was no choice but to do it, and I have realised since then that being strong is not a choice.

    When people ask us how we feel we invariably say, I'm fine, simply because we can't describe our feelings. I see a counseller at a cancer charity now and spend an hour once a week just letting all my feelings of anger, frustration and resentment go.  It helps. But, yet, here I am at 3.00am still awake.  Phil, I send you and your wife all my best wishes and hope that you will come and talk to us whenever you feel the need.

  • Hi Phil

    Welcome to this friendly forum though always sad to read of another family going through the pain that the journey with cancer so often brings. My husband had not longed turned 60 whern he was diagnosed with terminal cancer and some 7 months later I found this forum which helped me 'cope' with many of the feelings/emotions that I felt swamped by (and then felt guilty because I was well whilst my husband was trying so hard to maintain 'normal' outlook despite feeling wretched).  Life your wife my husband's body reacted none too well to chemo and it had to be stopped and he 'managed' with increasing pain relief for a total of nearly three years.

    Our 'outward front' of being ok when others ask was indeed the same for me but I saw it as my coping mechanism until I recognised that I needed release of my emotions in order to retain the strength to help my husband the only way I knew how - by being there by his side for as long as it took (as he would have been for me had it been necessary). The virtual friendship and understanding that the forum gave me both taught me a lot about myself and gave me a place to offload in times of stress and indeed fear. I hope you will come and do the same whenever it may help for you to share.Regards Jules x

     

  • Hi Pauline

    Thank you so much for your reply.  I am so sorry to hear that, after all you've been through with your mother and brother, you too are now afflicted with this cruel and horrible disease.  You're quite right about there being no choice as regards to being strong.  A man I know - just an acquaintance, not a friend - will occasionally ask me how things are, and will say, ' I don,t know how you do it.  I couldn't.' referring to giving injections, mopping up vomit, and all of the other unsavoury aspects of this disease.  I tell him that you have no choice.  You don't think about it, you don't question it, you just do what has to be done.

    Pauline, thank you again for replying to my post.  I feel better for simply hearing from someone out there who truly understands.  I anticipate using the Forum quite a lot.  I'm so glad I found it.

    I wish you all the best.  Take care.

    Kind regards

    Phil.

     

     

  • Hi Jules

    Thank you so much for your reply to my post.  I found your reply most helpful.  I understand what you mean when you say you felt guilty because you were well and your husband wasn't.  I feel exactly the same.  I would rather it had been me struck down with this horrible disease, and not my wife.  She really doesn't deserve this.  If I'm totally honest, I would have to confess that one reason I have for saying that is that I don't want to be the one who is 'left'.  I know that sounds selfish, but coping afterwards on my own is not something I want to think about.  A problem I have is getting my wife to tell me how she feels, so that I know what to do.  I know when she's in pain.  That's easy.  But, right now, I know there is something, but she won't tell me what it is.  I have to try to find out with a series of questions.  She finds that irritating.  I understand that.  It would irritate me.  Maybe she can't tell me.  Maybe she simply feels wretched because of the disease.  So I have to play it by ear.

    One thing I can say is that I believe that this short and awful journey has, in some way, made me a better person. I don't mean that to sound conceited, but I now understand, and am more sympathetic towards, people with troubles and torments in their lives.  But it has also brought a new feeling of guilt.  Nearly fifty years ago, when I was little more than a teenager, my father died of prostate cancer.  It was the late 1960s, and cancer treatment then was, shall we say, pretty basic.  I did what I could.  I sat with him, and we talked.  I helped out with the household chores, the shopping, and that kind of thing.  But not until now did I have any idea of the emotions and trauma that my poor mother must have gone through.  I wish I had known.  I could have be more helpful; of more use to her.

    Thank you again, Jules, for your reply.  I'm so glad that I found this Forum.  It's been less than 24 hours, and already I feel less alone, less isolated.  I think I shall be making good use of this Forum.  My best wishes to you, and take care.

    Kind regards

    Phil x

  • Hi Phil

    Please try not to feel guilty (I know its easier said than done) about how you dealt with things when your Dad was going through prostate cancer.  Times, treatment, circumstances would all have been so different  back then. Life's experiences teach us much but we can only do what we can manage at a particular time. My Dad passed away just over 8 years ago (primary was prostate which he refused treatment for) and it taught me that the person suffering from the illness is the only one who really knows  what he/she wants to do and how they approach it is not necessarily how their loved ones would want or even expect.

    My husband really did not like discussing his cancer as it made him very emotiona (which he could not handle) and yes I did keep asking those irritating questions which got on his nerves too.  We are only trying to do our best for those we love.  Eventually, I plucked up the courage to tell him how I really felt (not the devasted you have cancer, wish it was me routine) but that I could only cope day to day if he was honest with me as to his needs as I was afraid of second guessing and tip-toeing round the man I had known for over 40 years).  We reached some compromise way of coping in the end but its not easy.I then acted as go-between with children. family and friends so he only had to explain anything once. I am wondering if whatever you feel your wife is not telling you maybe because she does not want to upset you (hubby was very protective of me but always assumed I would manage!!!)

    From a personal point of view I did not look forward too much as to how I would manage once his journey with cancer ended (I spent my time worrying about the present!!) as I did not want him worrying about me any more than he already was, However, from a practical point of view we were advised by his oncologist to get important matters 'in order' to make a difficult process a little easier when the time came and it was not an easy discusssion but a sensible one. 

    My forum buddies keep me sane and its a good place to chat when you feel able to share and  has helped me understand myself too (like you see it does change your own outlook on life and how I see things now).

    Take care and regards to you both.  Jules x

  • Phil, over 30 years ago, I was in my late 30s and was in hospital giving birth to my 3rd child, I was having a pretty bad time of it and my poor, dear husband was beside me feeling helpless.   I remember him saying to me, However much pain you are in, it cant compare to how I am feeling, not being able to help.  I just wish I could exchange places with you.  Two years later, my husband was in intensive care.  I spent 10 weeks by his side until he died and I would have willingly taken his place.  I understood then completely how he had felt.  

    Very sadly we have to learn to live with what life throws at us, we don't have a choice.  But we have to make the most of it.  I have one last thing on my bucket list and that is to live by the sea.  I have put my house on the market, and am looking for somewhere close to a beach.  I may not make it, but its exciting trying.  :-)