Does anyone feel a burden to family like I do. Since being diagnosed with NSCLC I can't help but thinking all the problems I've caused for my family, especially my husband who will have to take me to never ending hospital appointments and cope with all my ups and downs. Sometimes I wish I went to bed and didn't wake up, at least then they would all be able to get back to a normal life. It's ruined everything and I feel bitter and angry. Best wishes to all that are going through this awful disease.
Feel a burden to my family. - The Roy Castle Lu...
The Roy Castle Lung Cancer Foundation
Hi Loimie, I felt exactly the same when I was diagnosed with Lung cancer. Feeling guilty and putting my family through all the worry. However that was 9 years ago and as soon as I was home those feelings went away. I think its a natural emotion when you are close to your family. They must love you so much and probably dont even think twice about caring for you. Getting yourself better and stronger is probably the best thing you can do for your family. xx
Thanks Jilly for you quick reply. 9 years, that's amazing! I start Immunotherapy next week but it's spread to one vertebrae, so I'm thinking it's too late. Yes, I've got a loving caring family, my boys are 40 and 35, two granddaughter's, 4 and 9. That's when I feel bitter and angry, won't see them grow up. I feel angry when I see people having a good time, that's awful isn't it. Do you feel normal again Jilly? I think even if I get through this life will never be the same, every ache and pain I'll be thinking it's back. Thanks for listening and sending my love. Thanks for the flowers, that's a kind thought. Xxx
Loimie, I feel for you and understand you must be feeling angry with yourself. Please dont , I had my whole lung removed and mine was due to smoking even though I had stopped before the diagnosis, The surgeon said it probably was due to smoking , but lung cancer is common no matter whether you smoke or not. Please dont give in, fight this nasty disease. I really do wish you well and my prayers go out to you. xx
Thanks Jilly for your kind words, they mean a lot to me, sometimes it's very hard talking to family isn't it. I asked if they can remove my upper left lobe, where it is but they said not because it's already spread to vertebrae, not in any other area. Yes, I smoked, not heavy, gave up 12 years ago. My prayers are with you too Jilly.
Their lives would not be ‘normal’ with you gone. What our family does to get us to treatment they do out of love. Do not deny that love.
They might get frightened and feel overwhelmed sometimes so remind them they need to care for themselves as well.
Morning, My younger sister felt as you do and gave up and died. I miss her every day and helped her all I could. Please keep fighting your family will miss you so much and now my daughter has breast cancer. Yes the trips to the hospital are many but I love her and nothing is too much trouble. Your family love you and will help as much as they can. They will be grieving that you are having to go through the horrid treatment and they will be upset for you. Please may I suggest that you talk to someone outside the family so that you can vent your frustrations and anger - it helps. Chin up you will make it - think positive.
Morning Molly, I'm so sorry about your sister and now your daughter has this vile disease, I hope all goes well for her with treatment. Yes, your right Molly it's easy to give in than fight, nighttime is the worse for me, but then again I feel I'm just playing at life now. It may be good to speak to someone like Macmillan. That's why I like this site to chat to people like you, who know what it's like. Sending my love and best wishes to you and your daughter. Xxx
Hi Loimie I agree with Molly and the others, I’ve just been through chemo and radiotherapy and am having an op in 2 weeks time to remove most of my right lung x
I have tried to make things easier for my family, even driving myself in at one point but family want to help, it does help them to be able to support you, let them xx
Also I felt like you and now have 1-1 counselling, it has made all the difference x
Please ask for counselling it really helps xx
Hi Jules, yes, I was quite stubborn once and went on my bike! They were all quite upset! Wish I could have it removed like you, but they said they can’t because it’s spread to vertebrae, I still don’t understand why they can’t. I will definitely think about counselling, is it done through the hospital, I’m at Christie’s in Manchester. I’m sending you love and best wishes and hope all ok for your op. x
Hi, I had my treatment at Christie’s and only finished 2 weeks ago, you can either visit Maggies centre which I would highly recommend, they have everything there and I went in the look good feel good makeup course, it was brill ! Gives you a great booster x they have counselling there and much more xx or ask your Macmillan nurse, they are great at Christie’s xx Best wishes x
Hi Loimie. I amHoping you will be able to see
My perspective as a daughter of my father who was diagnosed with NSCLC August 20. I stopped everything and joined my parents’ COVID bubble to be a support until I had to go back to work in June.( honestly, the COVID cloud is an added lifestyle stress which makes things even harder). Since then although Dad is doing well, I am more than happy ( in fact I would be extremely upset ) If he and my mum did not ask for my help with appointments, emotionally, etc. We all love to feel needed and when it is family, we want to be needed even more. After all, after a life time of dedication and support from my parents, it’s my turn to help wherever they feel I can.
I can only guess that your family want you to get through this and to do that you need to work as a string team… and don’t be afraid to ask for help or Lean on others… it’s your turn now to reap some of the benefits. You need to be positive and strong . No team gets through to winning and success without communication, asking for help , being focused on your goals and positive reframing, thinking and approach.
Of course you will feel down some if the time … that is the nature of life … but please … from a daughter’s perspective, don’t close yourself off from the love your family need to show you through their support and help.
I do hope this helps a little and that you can gain and maintain the positive strength you need … and I am sure you have ( after all, you reached out to us all here)… and they you make the most of your family and closest at this time . Wishing you the best to get through and succeed.
Hello, you are a lovely supportive daughter and I'm so pleased your dad's doing well. My boys said just like you mention, 'it's our turn now Mum to support you'. Yes, covid has had a terrible impact on cancer. My treatment wasn't delayed but I can't go in crowded places because have to keep having tests before immunotherapy, which starts at Christie's in Manchester on Thursday. And yes, this is a great site to reach out to. You just feel it's impact on everything don't you? Sending love and best wishes and thank you for sharing. X
Hi Loimie, lots of good advice above. I would be thankful that your family want to help. Some people don’t have that support so you are fortunate. I like you didn’t want to accept help or be a burden to anyone, but eventually realised that people do want to help and feel better themselves for helping.
I was diagnosed nearly 8 years ago and am still on treatment. I did have some counselling at a local hospice early on which was good. I would also recommend lung cancer support groups which can be face to face or seeing people on line. I think Roy Castle might have one, there also might be one in your local area. Where do you live?
I have honestly found speaking to people in the same situation the best. You soon realise that others have similar or the same concerns.
Wishing you a good response to your treatment. When times are tough I find taking one day at a time helps xx
Hi Bow, thank you so much for taking time to reply. It's terrible isn't it feeling a burden, can't help but think I've ruined their lives. I'm so happy for you, 8 years in amazing, can I ask how old you are? The reason being I'm 65 and think that will go against me, but I'm pretty fit, cycle every day and don't have any lung issues which I find odd! Roy Castle Lung Foundation is really good isn't it. I live in Manchester Bow, not far from Christie's where I start Immunotherapy on Thursday, are you having that? Sending love and best wishes. Pam x
Hi Loimie, I am 57 years old and was diagnosed at 49. I am treated at Christie’s too. I am also part of a patient support group which is linked to there at Maggie’s. I will send you a personal message on here with my phone number and you are welcome to join us if you want to. People age 40 to 80 in the group x
Thank Bow, you are so young to be going through this. I’ve seen on line and in the patient pack they give you about Maggies, yes I’d love to join in. Bet we’re in the waiting room at the same time, I go Wednesday, I’m with Dr Summers, she’s great, they all are aren’t they. How do I find personal message Bow. xx
Hi Loimie, if you click on your profile picture it should come up with a page which has message on it. Try clicking on there or try tapping on alerts at the top of this page and my message will hopefully appear in the alerts. If you tap on it you should be able to reply. Good luck xx
Hi Loimie I know how you feel it's an extremely difficult place to be. Mental health and cancer go as one but often pushed to the wayside. The stay positive stiff upper lip etc isn't for everyone. When I was first diagnosed 3 years ago and offered immunotherapy I was so optimistic I had heard great things about immunotherapy. It worked. 3 years later and on 3rd kind of treatment that confidence and being optimistic has gone. However before I started Chemotherapy this time the wellness nurse attached to the RBH cancer unit sent out a questionnaire then followed up with a call the following week. To cut a long story short she referred me to Macmillan who referred me to a Councillor. I find it easier to off load on a stranger than my family she's very helpful. I would urge you to seek professional help maybe through Macmillan or else where.This is a very long tiring unthinkable journey to be on unless you have been there yourself. I praise everyone on this site and the support staff their help and advice is so valuable but sometimes we may need that little bit extra help. Please don't be scared to ask for it. No stigma there. I did and it's starting to help me on this journey. Good luck YOU ARE NOT ALONE ❤❤❤
Hi Ollie, it is a difficult place to be, it invades every part of your life doesn’t it and yes it’s affecting me mentally more than physically. I feel optimistic about immunotherapy at the minute but who knows it may stop working, it’s like a ticking time bomb! I’m going to mention a counsellor when I go to Christie’s this week. This site is great, full of caring thoughtful people like you who take the time to care, it’s a godsend. We’re not alone are we! And that makes such a difference doesn’t it. Good luck and best wishes. xx
when I was diagnosed immunotherapy for lung cancer didn't exist and the only targeted treatment was for those with mutation of EGFR positive which I didn't have. Since 2014 the increase in treatments for non small cell lung cancer in particular has grown beyond measure - and most patients now have combinations of different treatments and if something stops working, by that time, there is usually at least one other treatment option to try.... clinical trials and research are improving the situation all the time too for lung cancer globally - the Christie is one of the UK's largest specialist cancer centres and takes part in many clinical trials - Dr Summers is on many national and international committees for lung cancer (I know from my involvement in LC research) and having a Maggies' Centre is great - the West Midlands doesn't have any at all and the area I live doesn't have any hospices either so do make the most of the resources available.... good luck.
atezolizumab is the immunotherapy I'm starting on Thursday Janette, Dr Summers said it's a long term drug that I can stay on, unlike the other ones which are 2 year maximum. She also said my markers? were exceptionally high and she was confident it would work. Also put me down for clinical trials. Thank you for all the info Jeanette. Best wishes xx
Hi Loimie. I felt really sad reading your post and feel for you. I agree with your other respondents and ask you not to worry too much about the Immunotherapy and hope you find, like me, that there are few side effects. I hope you will be able to feel more positively when you start the treatment that, at least, something is being done to help. Stick in there girl we're all rooting for you. Bloody awful disease- grrrr! 😡 Mags x ❤
Thanks so much for your reply Mags, I’m reassured that you didn’t have many side effects, I just hope it works, but it’s a mountain to climb. It’s a very cruel disease, taking everything away. Sending my love. xx
Hi Mags, first session of immunotherapy yesterday, feel ok up to now, only every 4 weeks and I can stay on it long term. I like longterm, it makes me feel there is hope. Its the emotional side that's the problem isn't it. It deprives you of everything, bloody cruel thing! Best wishes and love x
Hi I have had lung cancer for six years.Currently in remission though so positive.
Been in remission twice before and it sneaks back. Had lots of great treatment including immunotherapy.
Unfortunately I had a PSA blood test which came back high 19
So now had a scan of Pancreas and also going to have a bone scan too.
You just have to try to remain positive if you can.
The NHS is brilliant and look after you extremely well!
Hi, thanks for your reply, it’s reassuring to me to hear that your in remission, but yes, I’m worried it sneaks back. Is PSA prostate, my bother in law has that and he’s doing well. You get really down with all the tests don’t you. NHS are brilliant, wouldn’t get better private. Best wishes to you and I hope all goes well. xx
Loimie, it's common for us to think about what we're putting others through but as somebody who lost my younger sister at 40 (20 years ago) and then her daughter at 33 just 2 years ago, the effect on the family doesn't allow the peace you suggest.... life is a journey and at times we give help and other times we might need help or to ask for help - this is one such time for you.... I'm not sure why you think your age is against you as you're young..... my dad had bowel cancer twice in his 50s and we didn't think he'd reach 60, he was 91 in February and had another bowel cancer in 2016 and major surgery when he was 86. he cares for my mum at home who has alzheimers so has a major purpose in life to look after her (and declines almost all help or support much to our frustration as daughters). My diagnosis with lung cancer in Jan 2011 happened when I was 52 (never smoker) and I had a lobectomy. I asked my surgeon what I could to improve my life going forwards and he said 'a positive attitude helped'. I was back at work and swimming 3 months later then lost a friend to cancer and started fundraising for Roy Castle. Attending a conference of theirs in 2012 was the first time I'd met other patients and those at the charity supporting those with LC - I attended a workshop on feelings facilitated by a psychologist which I found really helpful and when I mentioned that to my consultant, he suggested I speak to the lung nurse (I hadn't been allocated one) and she referred me to counselling which I found really helpful as I'd bottled up a lot of feelings in my race to appear 'normal' and 'recovered'. I also found the book 'cancer is a word not a sentence' by Dr Rob Buckman really helped put things into context. I've been involved in cancer research since 2013 and find helping others helps me as self reflection and too much time alone can send our thoughts into a wild situation... hope you get some support soon - it is out there and Roy Castle charity has introduced many other ways of supporting people as a result of covid - phone check-ins, online topic led groups, as well as their more traditional written information and nurse led helpline... hopefully face to face support groups will resume soon... losing relatives only served to remind me that family is family - for the difficult times as well as celebrations - make the most of them and their love and support whilst it matters for you all and make some good memories however your life turns out to be - good luck.
Hi Janette, like I’ve said before your story gives me hope. The losses that you have endured is unimaginable, and yet you with total perseverance and courage have survived. I need to get that positive attitude! I’m out every day cycling but come the winter months that will be difficult. I’ll mention when I go on Thursday about a counsellor. Thanks again for you encouragement.
the cycling will help your lung function so maybe get a stand to convert it into a static bike or consider something similar if the weather is too bad to keep active. there are many online classes for those even with severe lung conditions on British Lung foundation and it really can make a difference.... good luck... hopefully the exercise and change of scenery will help lift your mood a little... thinking of you... x
And to add to the messages of hope posted by others here, like you I had what was described as a ‘hole in my vertebrae’. I was diagnosed in January 2019 and my latest scans show the bone has grown back so I no longer have a ‘hole’. And all signs of cancer have gone from my lungs too. It’s not too late Loimie at all. I wish you and your family well.
Thank you so much Elle, it’s nice to hear from you because like me it spread to your vertebrae. I’ve had so many messages of encouragement and hope. I can’t thank you enough. I’m struggling at the minute with the vertebrae pain, radiates to my left shoulder and down my left leg, can’t walk very well. I’m so happy for you that there are no signs of cancer. No it’s never too late is it! I send my love and best wishes to you and your family. xx
Hi yes I felt exactly the same but your not a burden belive me it natural you feel angry as well just take things as they go xxx
I feel exactly the same that I am a burden to my husband and Son. My Son is in his last year of 6th form. I’m scared what effect it will have on him, at this important time of his life. The emotional side of it is the worst!!! My husband is doing most of the cooking. This is not what I had planned for our future 😢 I truly try to stay positive, but sometimes it’s a tsunami of emotions. I’ve been on immune therapy since January. I too was told inoperable 😢
I feel for you. My son too was in his last year of sixth form when I was diagnosed, days after his 18th birthday party. Two and a half years on, we have had a pact of truth and honesty between us which has helped. I’ve told him he can read my medical notes, attend appointments, etc. The same for my daughter. If there is any good to come from this, we have all become even closer and value each other so much. We have had some of our best times together in the past two and a half years. I have never felt like a burden - because I know for my kids I’m a burden they’d rather have than not. But yes, I feel guilty and am determined to do the best by them I can and keep going!!
I feel for you Chester, I'm more worried about my sons than me, like you my husband is caring, I suppose we should feel lucky really, but that's hard to do. Your son will be strong, I was so worried telling my boys but they've been stronger than I thought. It's my 9 year old granddaughter I'm trying to shield from it, but it's difficult, they have ears everywhere at that age! I send my love to you and your family. X
Thank you the worst moment was telling my Son 1 I had Cancer and 2 it was inoperable. He said to me, you won’t see me have children. I was in bits inside😢 but I said to him you or I don’t know that, but I’m gonna fight to stay here 💓
Yes we've no other choice but to fight this awful disease, my younger son 35 hasn't got children, so yes I've thought I won't see them, also like to see my granddaughters grow a little more, 4 and 9. Lung cancer has spread to one vertebrae. I have osteoporosis and my consultant said it's found a weak spot. Never ever thought I'd be here, or not just yet, I'm only 65 but lots of people on here much younger, suppose I'm lucky to get to this age. Sending love x
There have been some wonderful replies to which there is not much to add.
Speaking to a counsellor or someone other than family can really help and you can unburden yourself to them. They will also provide ways of helping you cope with your emotions, which are very normal.
Macmillan support have some good information on emotions and cancer: macmillan.org.uk/cancer-inf...
We have online group support through zoom and you can find details on how to register through this link: roycastle.org/help-and-supp...
Or you can look at the online discussions in the post above titled 'New Support Sessions starting soon'
Surgery is only an option if the cancer is contained within the lung, if it would not be of any advantage going through surgery if it has already spread.
If you would like to discuss anything you can either email us at email@example.com or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
All the very best
The Roy Castle Support Team
Hello, yes I have received such a wonderful response to my post. It's an amazing site and so glad I found it. Some lovely caring people. Yes, my lung cancer has spread to one vertebrae. I start Immunotherapy on Thursday. Thank you for all your help and links, I am going to find a counseller, the emotional side is hard to cope with. Best wishes Pam
All the best Pam and hope your Immunotherapy treatment goes well.There is plenty support for your needs and please do not hesitate to ask for help and you can always contact us with the details I placed in the last post.
The Roy Castle Support Team
Yes , dear we feel such things don't worry about it and meditate take care
Hi hope you are feeling a wee bit more positive now this is great forum always someone to help and reassure you you need stay strong thinking of youx
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