Mum has terminal lung cancer

Hi everyone, this is my first post here. Not something I wanted to do but this is where I am. My mum was diagnosed with Lung Cancer back in January. She has always been super fit before that. The only sig. We had was she coughed up a little blood and then things snowballed from there. It turned out she had Metastatic Kidney Cancer and now Some small tumours in the brain. She has been managing ok but things seem to be getting worse. She had Srs radiotherapy for her brain mets and that seemed to go ok. We are about 1 and a half weeks later now and she is really struggling. Constantly tired and struggling to get around like she did. She says she's constantly tired and has a lot of aching on her right hand side.

She's not in any pain now we got the medication sorted but I'm constantly worried. I'm hoping she will pick back up again. She had a patch before where she was constantly tired and she came back round to be more active. I'm worried out of my mind that she will keep declining. Could this tiredness be down to the brain radiotherapy. She seemed ok when she had it but she was on steroids. The doctor said 6-9 months then 9-12 if they can get control of the cancer. She is supposed to be having radiotherapy for her lung but I'm not sure what will happen with her feeling weaker. She wasn't so bad only a few days ago and now she is very tired again. I just don't know how to cope with losing my mum. She's my life and I will be lost without her. I've been living with her at home for the past 18 years due to my own illness. We are so close and it feels like my world is falling apart. I know other people go through this but I am struggling. This is the hardest thing I will ever have to do. Muly mum is 65, she still feels so young to me. Thank you for reading. 

Parents
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    Hi Sighill,

    I am so sorry to hear of your current circumstances. This is a particularly hard and heartbreaking time. I have been through it with my own mum. While you have her try to  get past the fact that you are losing her and support her as much as you can. Tell her how much you love her and don't leave anything left unsaid. 65 is certainly not old, but sadly cancer is no respector of age.

    Do you have any help or support to care for her or are you trying to do this on your own? In situations like this, you somehow or other find the strength to get through this ordeal, but it helps tremendously to have someone to support you.

    Thinking of you both and I sincerely hope that your mum's tiredness settles down soon. Please keep in touch. We are always here for you.


    Kind regards,

    Jolamine xx

     

  • Thank you for the kind words Jolamine. It means a lot knowing that there are people who can support you through this. I do have some support. My sister comes round and helps out. My father is at home but he is disabled so not able to do much. I know you are right about appreciating my mum while she's here. I do always tell her how much she means to me all the time and I appreciate every minute I can spend with her. It's so difficult thinking of what will happen in the future without her. I can't bear the thought of living without her. She's everything to me and I don't want to imagine her not being here. I think everything will be so empty. I think the pain of seeing her get worse is unlike anything I've ever felt before. It physically hurts, I have never felt pain like it. I am trying best to get through it and enjoy the time I can spend with her. Thank you so much for the support, it means a lot. X

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    Hi Simon,

    I am glad to hear that your sister is helping out and that you are there to support eone another.  Do you have any medical or social care input? You will find that you are already starting to grieve in your own way, but try not to pile on the 'what ifs' at the moment. You have more than enough to cope with, without worrying about the future. Take things one day at a time. 

    There is time enough to cope with the future after your mum passes. None of us want to lose our precious mums. but sadly this is something that e all have to go through. You will always hold a place for your mum in your heart and carry it with you forever. I am certain that your mum is proud of all that you are doing for her at present and would want you to  continue to be as strong after she is gone.

    It is many years now since I lost my dear mum, but I have always tried to carry on with my life as she would have wished. I have found it helpful to have reached milestones in my life that she wished for me and, I am sure that she is smiling down on me and my family, happy that we have achieved these goals.

    It is heartbreaking watching a loved one fail, yet we all find the strength to get through it We rise to life's challenges as they occur. Please try not to heap them all upon your shoulders at the same time. Instead, cope with them as they come along. This could be day by day, hour by hour or even minute by minute, as needed at that particular time.

    Please remember that we are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you for the kind words Jolamine, it means a lot to me. We don't have any support system in place yet but we will have social services coming soon. My mum had to go to hospital 2 days ago. She was feeling very drowsy and confused. I believe they are giving her liquids as her calcium levels are very high. I think she also has an infection. I just hope they can help her and get her back home. I know you are right about not worrying about what happens next. I do appreciate all the time I get with her, it's just so hard to not think about the future. I know I'm just creating my own problems as once you start thinking you can spiral out of control and you always imagine the worst. :(

    I'm so sorry to hear about your mum. It does help to speak to people who have been through this. I know that nonmatter how bad I feel there is a way out. Other people like yourself have got through it. I think it's all the emotions that just get on top and crush you. It does feel like sometimes just getting through the next hour is a challenge. You feel so hopeless, it is heartbreaking to see someone you love so much deteriorate in front of you. I will try and break it down and get through it bit by bit. If I think about everything it just overwhelms me. Thank you again for the kind words, it does help me so much to know there are kind people out there who are willing to support me as I go  through this. X

    Simon

     

     

     

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    Hi Simon,

    I am so sorry to hear that your mum has had to go back into hospital, but hope that she will soon be able to come home again soon. I do hope that you can get a support system into place. Even if this just helps with your mum's personal care, it will give you some more quality time with her when you don't have to carry out all the more munane tasks as well.

    It is all too easy to spiral out of control and to think the worst. This is only natural when you know that there is no way of avoiding the inevitable. Have you been able to broach this with your mum and is she accepting of her situation? Some people have no problems with this, but others are very afraid of death - I know that my mum was. You will find that being able to voice your feelings, even to strangers like us, can help you to cope with all that is happening.

    It is so difficult to watch when you feel so helpless. I certainly found this too, but you are doing a lot by just being there for your mum and, I am sure that she appreciates this. Do try and break things down. Looking at the enormity of everything together is too much for anyone to cope with.

    Kind regards,

    Jolamine xx

     

  • Thank you for the kind words Jolamine. I just spoke to the lung cancer team today and they said that they won't do any more treatment as they think the cancer is too advanced. They asked about home care, I want my mum to be at home too die. She always said she wanted to be at home. The thing is now she is still in the same condition and we are waiting and hoping she improves a little. Even if she does once they gave stopped treatment there's nothing to help her. I am feelng so empty and hurt, I thought she was going to have lung radiotherapy and now I don't know how long she will be here for. The best I can hope is that she's home and comfortable. I'm not sure how to get through this, the pain is unbearable.

    I have spoke with my mum and she says she isn't afraid of dying as she will go and see her mum. The next time she says I don't want to die yet and I always tell her you are not going anywhere. I think she's more afraid of leaving us than the actual dying. It is, I'm just trying to get through this weekend. The treatment hopefully will help a little and we can get her home. I just want to be with her to hold her hand. I always tell her I love her and I know she knows this. It just feels like I can't say it enough, I can't show her how much she means to me. She is everything. Thank you again for the support Jolamine. It means a lot. X

    Simon

     

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    Hi Simon,

    I am so sorry to hear this devastating news. I do hope that your mum is able to get home as she wants. Is the hospital going to arrange home care for her? Sadly, there soetimes comes a time when treatment is no longer an option. We had the same experience with my mum. It is so hard to watch and wait, but, even though you don't want her to leave you, you wouldn't want to extend her life when there is no quality.

    As a mum , I would agree that your mum won't feel ready to leave you, but I'm glad to hear that she is keen to meet up with her mum once more. Don't worry, you can never tell her enough just how much you love her and, being there to hold her hand will mean everything to her.

    Jolamine 

  • Thank you Jolamine. Yes they have been talking about home care. I said thaty mum has always wanted to pass at home so hopefully she remains stable and we can get her home where she should be. I understand about the treatment, I want her to stay longer but I don't want her to suffer any pain. I don't think it would ever be enough for me no matter how long she stays so I want her to be peaceful and feel no pain. It still feels my heart is being ripped out but I know I will feel like that no matter when it happens. I'm sorry to hear you went through that with your mum.

    I know she believes in the afterlife and she says she will always be with me. I will tell her as much as I can, I am always holding her hand. I just like to be with her no matter how she is. Even if she is asleep I just want to be with her to show her how much I love her. Thank you for the support, even though I feel devastated it is reassuring to know people are there for you when going through this awful time. Thank you Jolamine. X

    Simon

     

     

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  • Thank you Jolamine. Yes they have been talking about home care. I said thaty mum has always wanted to pass at home so hopefully she remains stable and we can get her home where she should be. I understand about the treatment, I want her to stay longer but I don't want her to suffer any pain. I don't think it would ever be enough for me no matter how long she stays so I want her to be peaceful and feel no pain. It still feels my heart is being ripped out but I know I will feel like that no matter when it happens. I'm sorry to hear you went through that with your mum.

    I know she believes in the afterlife and she says she will always be with me. I will tell her as much as I can, I am always holding her hand. I just like to be with her no matter how she is. Even if she is asleep I just want to be with her to show her how much I love her. Thank you for the support, even though I feel devastated it is reassuring to know people are there for you when going through this awful time. Thank you Jolamine. X

    Simon

     

     

Children
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    Hi Simon,

    I am glad that you understand about treatment. I find that it is better to let your mum and her doctors to decide whether or not she wishes or is fit enough to keep fighting. We all want to have our loved ones with us for as long as we can, but don't want to see them suffering unecessarily.

    It is helpful for all of you when she believes in the afterlife. My mum did too and I have always believed that she is still watching over us. I have found it helpful to try and reach all the goals that she had wished for me and my family. This has given me a goal in life since she passed, as I know that she would not want me to be sad all of the time. 

    I keep a photograph of mum in a prominent place and often talk to her as I pass by. Many of us find that this helps.

    I am hoping and praying that your mum gets home soon.

    Kind regards,

    Jolamine

  • Hi Jolamine, I do understand about treatment. Originally I wanted my mum to have everything we could get but they only offered her radiotherapy. That was before they found out she had brain Mets so that treatment came first then it was supposed to be on the lung next. Once I saw my mum in discomfort with the cancer I did change my mind about the treatment. I originally wanted her to have chemo or radiotherapy and everything they could give her but I don't think I can see her in pain. It's too much. It has too be what she wants. I want her to be here forever but I can't see her suffer. She needs to be here as long as she can and she's comfortable. 

    I'm glad your mum found peace. I'm sure she is very proud of you. I know my mum just wants me to be happy. She has told me to try and get on with my life and be happy. I do want to do that even though at the moment the thought of living without her makes me feel like I can't get through it. I know I will but it is so hard. It feels like your chest is being ripped apart.

    I do have a photograph and I already have it up in my room. I think that will definitely help. I want as many memories as I can possibly have. She's such a big part of my life, I want to keep her with me always. Thank you for the kind words Jolamine, it means a lot. I hope she can get home soon so we can look after her. X

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    Hi Simon,

    It is so difficult to watch a loved one suffer, especially when you know that it won't increase their chances by much. It is so hard to do what your mum wants, whether or not you agree with this decision, but it is the best way.

    Can I be very rude and ask what your medical problems are and, will you still be able to live independently after your mum has passed? This is a personal question and, you don't have to answer it if you don't want to. I just worry that there may be other contingencies to be considered in the meantime.

    I am sure that your photograph will help greatly. Although you want as many memories of your mum around as possible, remember that you don't need to create a shrine. Many of these memries , you carry in your heat and always will. It is not always healthy to have too many physical reminders around you, as you will also have to eventually move on with your own life. This may sound harsh, but I am sure that this is what your mum would want.

    I hope that you don't find me too frank. I tend to tell things as I see them and certainly don't mean to upset you.

    Kind regards,

    Jolamine 

  • Hi Jolamine, yes I do understand it's my mum who's important here. She needs to do what she can but when she's not strong enough she needs to be able to go peacefully hopefully. That's not rude, it's fine. I have an undiagnosed condition with severe dizziness. Basically I've had many tests over the years and they could never find out what caused it. It  affects me as I can only have my head in certain positions without causing the dizziness to flare up. My mum has always looked after me and done as much as she can. I am managing to do as much as I can but my sister does come round to help with the house as it's too much for me to try and look after everything. If I do something or clean up I usually need to have a rest after until my head has settled down. I am unable to work or drive and just go out when I have too as it's quite difficult. I do manage if I have to go somewhere though as long as it's not for too long.

    I do understand what you mean, my first thoughts are to have as much stuff aroumd me as possible but I know that might not help in the long run. My thoughts are everywhere, I don't really know what I want. I just want my mum here but I know that's not going to possible at some point. That's fine Jolamine, it's helpful to speak to someone who understands what I'm going through, to know that it's not just me who feels like this. I appreciate you helping me through this. Thank you. X

    Simon

     

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    Hi Simon,

    I am sorry to hear about your condition, but it sounds as if you could live independently with the help of your sister, or a home help. Your dizziness must be quite frustrating at times, especially when it remains undiagnosed. Does any medication help you?

    Kind regards,

    Jolamine xx

  • Hi Jolamine, it is very frustrating. As it's dizziness most people think just get on with it and I really would if I could but it is very debilitating. I would love to be able to do normal things but my head won't allow it. I even paid to go private and they still couldn't help me. I've tried to learn to live with it. I take an anti depressant through the day to help with anxiety and Diazepam at night to help me sleep. I really did struggle to sleep originally so I am thankful that these medications help me. I do think I would be able to live on my own if I had some assistance. At the moment I'm still at home due to my illness. My dad is here but he has his own problems. He's not very mobile so it would be me doing most things. I would be able to manage with help though, I'm sure my sister will help out where she can. I think because my mum has always looked after me it's even more daunting to try and think about doing even normal everyday things. I have had to start doing more things since she became ill and I am finding despite the fact I have some bad dizzy spells and have to stop I have been managing for the most part which I am grateful for. Thank you Jolamine. X

    Simon 

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    Hi Simon,

    I can only imagine how difficult this must be for you. Have you had any recent investigation for this problem? Scans and tests have come a long way in the past 18 years and, it might be worth re-visiting the problem to see if you can get any answers now. I have problems with dizziness myself, so know how debilitating that can be.

    I can understand how much worse this all seems to you, when your mum has been caring for you and your dad all this time. It would be one thing to care for yourself, but quite another when you'd have to care for your dad as well. It is great to hear that your sister will help out where he can, but will this be enough for you?

    Sorry to raise these questions, but I always like to be prepared for any eventuality.

    Kind regards,

    Jolamine

  • Hi Jolamine, sorry to hear you have dizziness problems as well. It's really frustrating isn't it, people don't quite understand when you say you are dizzy. They think what's wrong with you. I did have prolonged tests over a couple of years and they couldn't pinpoint the problem so they more or less said carry on there's nothing we can do. I do try and carry on with it as best as possible. It may be time for me to be rechecked at some point though. Maybe something new can be done. My doctor always seemed to think I had checked everything and there was nothing more they could do.

    My dad is able to do certain things but he is limited. He has had 2 strokes so he isn't really safe as far as cooking or anything like that. We were looking at getting carers in for him but he decided he doesn't need them. I believe he does but I can't make him do it if he doesn't want to. I think if he does get more ill he will realize there is no choice for him. My sister is very helpful, she does have her own family though so she can't always be here. I am managing to get by on my own though. I just have to limit what I do. I was looking after my mum before she went into hospital and I did struggle a little more then. I feel like there is less to do now. I think that's because I'm so worried about her when shes here I'm trying to look after her. I think I let the stress get on top of me as well. Hopefully when she can come home I need to relax more. I can feel myself on edge constantly worrying and I know that doesn't help anybody. Thankyou. X

    Simon 

     

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    Hi Simon,

    It might well be worth getting things checked out again, as medicine is advancing all the time. If your dad doesn't want carers in perhaps you could get them in on your behalf? If you are having dizzy spells too, it cannot be too safe for you to do the cooking any more than for your dad. Although it is great that your sister helps out all she can, it isn't really fair to depend upon her totally when she has her own family to take care of.

    You may find that there is a lot more to do when your mum comes out of hospital, so it might be worth revisiting the subject of carers with your dad in this respect. Instead of having to do the more mundane tasks, this would give you more quality time to spend with your mum and, this is so precious at this stage.

    Kind regards,

    Jolamine xx

  • Hi Jolamine, yes it's definitely something I'm open too. The only difficulty is travelling as these tests are usually quite a distance away from me which in turn affects my head again. I know I will have to do this though if I want to get anywhere with my condition. I generally know when I will have the dizzy spells so I can usually stop when I need to. It's more like once I start feeling it then I have to rest for most of the day and see how my head feels the next day. I think I can manage most bits, I just can't stand up for too long or that usually makes it worse. My sister is busy and she does have her own business so I know she cant always be here. 

    I think you are right, I'm not sure how it will be. I would definitely imagine there will be a lot more to do. The caring will be more full time than before. I will try and ask him again, he just shut down the idea completely stating he doesn't need them. He's trying to prove his independence and sits on tablets and computers all day. He has bad legs which need checking as he's prone to infection and he doesn't do it. He will end up very ill himself if he is not careful. He had an infection last time in his leg and ended up in hospital. My mum used to look after him but she has had to stop since she got worse. It's really tough at the moment. I just want my mum to get out of hospital, she's not happy there and no one has really told us how she is doing. It's so frustrating with covid, I just want to see her. She sometimes gets confused and I don't know whether it's the medication or the cancer. They said they will reassess this week and tell us what's happening. You just get that constant dread feeling in your stomach. Every time I wake up I think how will I get through today. I know I will but it is hard. Sorry to go on, I just feel like I have so many things happening and it's hard to stay in control. Thank you for listening Jolamine, it's very kind of you. X