supporter of 50 year old husband with stage 4 lung cancer- in shock and very frightened

supporter of 50 year old husband with stage 4 lung cancer- in shock and very frightened

my lovely 50 year old husband is diagnosed with lung cancer and he is having chemo - first one nearly 2 weeks ago and he will be having three weekly cycles for 4 times- and he has been well so far for which I am so thankful. I am struggling to cope but have too - and be positive and we are living in the moment but I fear the future. My husband is very strong - my daughter is 21 and son 25 and they know the diagnosis but not prognosis as we don't know what impact this chemo will have. I would love to link in with other supporters and especially any in Bristol - as I have friends but don't want to over burden them. I am also interested if any one is supporting anyone and in work- I am signed off at present and cant face being away from my husband - but know I will need to be back in one day - it all is very hard at present x

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  • Hi, sadly your post resignated with me. I live in the Manchester area so not near by to you

    . My partner was diagnosed in march this year with stage 3a NSCLC. Initially they were taking a curative approach ; chemo followed by radiotherapy. Unfortunately he wasn't able to tolerate each part of the 4 cycles of gemcarbo. His white cells were often too low to have the second part of his treatment and the tumours only partially shrunk.

    He finished 20 sessions of radiotherapy 4week ago and he'll have a scan in 6weeks, then go on trials. He was tested for ALK gene but wouldn't be eligle for the treatment.

    They stopped talking about curative and the prognosis is bleak.

    I too took time off work; initially sick leave, but then a career break. I will have to return soon and as time has progressed I think we need to have some time apart to help us survive this. There will be another time where I need to be with him 24/7, but that's not come yet. The grief immobilises me and the fear is intolerable at times.

    I have children (19 & 23) but he doesn't. Don't underestimate your kids knowledge. They too will be scanning the internet and will understand the prognosis? And, you don't always have to be strong for everyone, maybe sharing with them might help you all?

    I wish you well. This journey is overwhelming isn't it x

  • Good morning, I have just read your post and my heart goes out to you and your family. Sadly my darling husband died almost 8 months ago and my day to day situation wasn't the same as yours, but I just wanted to say that I will be thinking of you during this time. Cancer is the most horrible disease. I am sorry that I can't offer any practical advice but you are very much in my thoughts, Diana

  • Hi, I am so sorry to hear the news about your husband and his illness. My husband was diagnosed with small cell lung cancer in July this year and given a life expectancy of 3 - 6 months without any treatment, he was offered chemotherapy and has been undergoing this, he has had a total of 5 cycles. It is with great disappointment and upset that he took ill suddenly after cycle 5 and ended up in hospital having to have a blood transfusion, the Consultant has now withdrawn the final cycle of chemotherapy much to my disappointment. I had prayed that every last drop of chemotherapy would be given to my husband and we would have the best length of time possible before this cruel illness claimed his life, but its not to be and we have to move forward and make the most of the valuable time we have together. Unfortunately, life is a bit of a rollercoaster but please stay positive for both your sakes - your husband needs you to be strong. I am working full time at present and I have to admit my employers are very understanding and I am able to be with my husband whenever the need is necessary ie hospital appointments, treatment. I know deep down that eventually I will have to be with him on a 24/7 basis but at present it is more practical for both of us to carryon life as best as possible. I have also asked my husband about a bucket list of things he would like to do before he is too poorly and we are slowly going through these things together eg. going to see a Liverpool Football match, renewing our wedding vows, going to London to see the crown jewels. These things have kept my husband smiling and positive. Its an illness that effects both the patient and carer, but please remember there are services out there to help you come to terms with your husbands health - dont do this alone, please ask for help. I wish you both every bit of good luck for the future, but please hold on to every minute and value it by doing lots of memory buiding things. Take care and please stay in touch if you think I can help you in anyway. My husband has battled cancer for 10 years and I have found this news the hardest ever to accept but I have to be strong. Best regards Elaine xx

  • how are you doing ? X

  • Hi Elaine how is your husband keeping hope he is ok my partner was diagnosed end ov September with the same has yor husband hes only had 1 chemo up to press 5 to go hes feeling not to bad good days and bad days but he feels he is getting weeker by the day it's the unknown i find very hard although we are staying positive take care xx

  • Thank you for kind email it was lovely to hear from you, I am sorry to hear your husband is becoming weak due to the treatment, but please hang on in there, it will hopefully buy you some more valuable memory building time. Alec and I have been doing lots of memory building events over the last few weeks as he has unfortunately been into hospital due to the side effects of the chemo and has since had his last treatment cancelled. We renewed our wedding vows a couple of weeks ago what a magical day it was, Alec went to see Liverpool v's Tottenham and was delighted that his favourite team won. Both Alec and I are living one day at a time with this cruel illness but we are both determined to keep positive and carry out lots more of Alec's bucket list wishes. If there is anything I can do to help you please get in touch, I am always here to listen, stay strong and I wish your husband every bit of good luck for his next treatments. Take care x

  • Hi. I was so sorry to read your post and really understand how you are all feeling. My wonderful husband was 61 when he was given the same diagnosis as your husband just before our 39th wedding anniversary four and a half years ago!! We felt as if our world had fallen apart and at the beginning I didn't know how I would be able to cope. But you do! With love and support to each other you will get through these dark days and laugh again. I'm not going to pretend it's easy because it isn't. One of the ways I found helped me was to start a blog ( just for me) where I could put my thoughts into words ( the computer hasn't blown up yet !!!) . It's entitled The Biggest Roller Coaster in the World, cos that's how it feels! It's also handy for putting down side effects after chemo etc. Anyway, 3 different types of chemo, 2 lots of radiotherapy and in the summer of last year a second biopsy (as the original was too old for retesting) we found out out that Steve is ALK positive which hadn't shown up at the outset, and he has now been on crizotinib, a targeted oral chemotherapy drug, since September 2015. Yesterday we went for our monthly appointment and 3 monthly scan result and were told all's still stable. Life has never been the same since diagnosis and you live your life differently because you have to. But there will be good times for you all again. Never give up hope, stay positive, support each other and have fun whenever you can. We are in Leicester so not very close to Bristol, but I am only an email away if you needed to talk about anything. I hope your husband tolerates the chemo well. Love and take care of each other.

    Love

    Jan x

  • Hi wot is ALK POSITIVE

  • Hello

    ALK positive is a gene mutation. If you google 'ALK positive lung cancer' you will be able to read up on it. There's lots of information about it on the internet. Ask your oncologist if your husband has been tested for it.

    I hope things are going well for your husband and you.

    Take care

    Jan

    Xx

  • Hi @TraClo, big hug. Coming from a different perspective here (my Dad was diagnosed with Stage 4 lung cancer). Just wanted to share on a few points you mentioned:

    - Kids are resourceful and could be a great help to both of you emotionally and just being there and understanding :) (Macmillan has material about how to talk about it and they also have a national hotline if it's useful)

    - My Dad was diagnosed with the EGFR mutation, and is on Gefitinib. Just on the off-chance that targeted therapy hasn't been discussed, this could be something to ask the doctor about?

    - My Mum was really worried about burdening her friends with this heavy load on her, even though I could see them reaching out to her. She took a long while to open up, and it's still really tough for her to talk to her friends about it. But I think it's a great thing to have friends who know you to support you, so don't underestimate your friends too! They might have a better understanding than you know - since I've told a few of my own friends it seems everyone has been affected by this disease.

    - Local support groups are really a great help to both the cancer fighter and the caregiver. My Dad attended a Macmillan workshop after he was first diagnosed and he was able to share things with the group that he didn't share with us.

    My mum and dad are now attending a Mindfulness course at their local cancer support centre, as well as a short weekly relaxation class to meet other people, and my dad attends their Taichi class too.

    I read a research paper somewhere that showed patients with support groups fare better than those without, so one of the first things we did was speak to Macmillan and ask them for who the local support groups or centers were - maybe you could try this too? The person I spoke to was really helpful with all sorts of organizations for caregivers and later stage physical care as well.

    I did a quick Google search and found this cancer support centre in Bristol on the off-chance it may of use: pennybrohn.org.uk/what-we-o...

    Big hugs!

  • thank you very much for this response take care x

  • Dear TraClo,

    It is good to know that so far that your husband is coping with the chemotherapy. It’s natural to feel overwhelmed by his recent diagnosis. You can see already that there is a great deal of emotional support available from friends in the Roy Castle community website. It’s often helpful to share experiences with others outside the family who have been through a similar situation.

    Please don’t hesitate to call the Nurse Led Helpline 0800 358 7200 if you feel you need someone to talk to.

    With kind regards,

    All the team at the Roy Castle Helpline.

  • you all are so kind responding - and i hope to get your strength and hear from you all soon - i wish you all and your loved ones well xx

  • I'm so sorry to read about your husbands diagnosis and can truly identify with all the different emotions you are feeling...shock, fear, helpless, it is the most heartbreaking news which leaves you reeling.

    Just 3 weeks ago my mum was diagnosed, totally out of the blue, with small cell lung cancer. She had no symptoms and the x-Ray she had gone for was purely routine and she wasn't at all concerned. Until she was called back for a CT scan and when she returned for the results of this we were shocked, bewildered, overwhelmed...the list of emotions is endless.

    The next appointment with the oncology consultant left us devastated...he was honest and straight to the point...without treatment she has weeks, which I'm still struggling with as she seems so well apart from the anxiety and loss of appetite this diagnosis has caused. She returned last Tuesday for a brain scan and bone scan to see if this dreadful disease has spread but we won't know the results of these scans until her appointment with oncology this Wednesday.

    I'm trying my hardest to keep her spirits up, I sleep over so she isn't alone, I call in every day to spend time with her, my dad died very suddenly in January 2015, but when I come home I just fall apart. I am so devastated, afraid of what the results will be on Wednesday, so fearful of the coming weeks, the tears just keep flowing every time I leave her.

    I have 3 children aged 23, 21 and 13 and a very supportive husband, I waited a couple of days after learning my mums diagnosis before telling my children just to give myself time to absorb the shock. I don't discuss all my fears with them that are racing through my mind, but at least they understand why I am so emotional and are not only supportive but surprisingly very resilient. We have always lived just down the road from my parents so they have been a huge part of my children's lives, taking/picking up from school, they were both a daily part of their lives from the day they were born.

    I too feel I need to speak to people who know the effect this has on those caring for loved ones with a terminal illness. I have decided to contact the Macmillan team at the hospital who support family members during this dreadful time. I feel I'm going insane with worry and I know this is only the beginning. I know that the prognosis for small cell is not as good as non small cell but until I know the scan results really don't know what the prognosis is. I was confused at how the consultant could say my mum had just weeks without treatment before she had even had her scans?

    Elaine141 got it right, it is most definitely a roller coaster for both the sufferer and their loved ones.

    I hope your husband responds well to his treatment.

    Jacqui x

  • thanks you for your kind message Jacqui and I do hope that your mother and you get some positive news and the treatment starts well and quickly- its such a terrible time for you and your family. I will be trying to get some support from a local organisation soon - so lets home this helps- but nothing will stop this happening - its so unfair - I feel like history is repeating on me as my mother died young from cancer and now my sole mate and husband - I wish you strength love Tracey x

  • Thank you Tracey for taking the time to reply to me when you're going through so much yourself. I feel exactly the same...I keep debating ringing the Macmillan team but I feel so sick to my stomach with worry and so heartbroken and know that regardless of what they say to me, it isn't going to make this nightmare go away.

    I have cried all day, tomorrow is results day and God knows how my mum is feeling because I just feel so sick...I want to know but I don't because then after tomorrow treatment begins and this becomes so real.

    I really feel for you, having lost your mother young to this nasty disease and now your beloved husband so poorly. Life is certainly cruel sometimes, I'm still reeling from my dads death last year and certainly not ready to lose my mum.

    I wish you strength and courage to face the coming weeks and thoughts and prayers are with you.

    Much love, Jacqui x

  • Hi I am so sorry to hear about your husband. I myself was diagnosed nearly two years ago. have had operations and chemotherapy unfortunately neither of these was successful. the prognosis I was given was approx. I year even after treatment, two years later I am still here. Please don't give up hope, My husband is a self employed builder and so no work . no money and of course I have had to give up work as well It is very difficult sometimes. If you need to talk to some one the Macmillans are brilliant. My son who is 27 and his wife are due their first baby in March 2017 and this has helped me enormously, try to think of something to look forward to , I know its difficult. Please don't stop making plans either , I have found people very understanding if you have to cancel at the last minute. If your friends are true friends they will want to be there for you at all times as im sure you would be for them.I have found a lot of comfort and so have my family through the church we go to and even if you are not a church goer your local vicar will be very supportive I am sure. As for leaving your husband while you are at work , my husband was the same with me but sometimes I needed to be on my own to have a think and abit of quiet time, we see how our cancer affects our loved ones and that makes us suffer more. we want you to carry on with your normal lives as much as possible as that makes us feel more normal to, instead of feelling as if everything revolves around us. I hope that your husbands treatment goes according to plan. Thinking of you all.

  • thank you Bevbettison for your time and encouragement - we are in the best place we can be however i have just had a big melt down as my husband is planning and planning for which i understand and helps him and is done for the best reasons- but i feel so tired my head feels like it is going to explode. I am so happy that you are doing so well and i really hope this continues for you - i am so grateful my lovely man is also appearing well with the new therapy - and i do hope it continues- i do not pray as i am not religious in any way nor is he - but others are doing so and this gives us both comfort. my thoughts are with you and the family love Tracey

  • thank you for all those who responded - its a tough time and I was feeling so strong but today was not strong - still unable to find any supporter groups in Bristol but have had contact with other supporters via email which is a life line but I am seeing a counsellor on Wednesday - I feel scared about this - I hope everyone else is doing ok xx

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