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. 

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    Oh Simon!

    I thought that something might be amiss when I never heard from you yesterday. I am so sorry to hear this and send you and your family my sincerest sympathy.

    You will feel relieved that you and your sister were with your mum right to the end and, I'm sure that your mum got great comfort from this too. You were all fortunate to be together at the end, as there are many people in the world who haven't managed to be with loved ones due to the pandemic. I am so glad that your mum got out of hospital when she did.

    I know that you didn't want to let her go, but it is just as well that her passing wasn't too prolonged or her pain too drawn out, as this only adds to the agony. It is always difficult to let the funeral directors take over, especially when you have all been so involved in her care throughout the past few days.

    It sounds as if your mum was strong for you all right up to the end and, it is now your turn to show the same strength, although I know that your world has been turned upside down. Your mum would not want you to be miserable.

    There is absolutely no need to thank me, I am pleased to hear that I was able to help in some small way. I only wish that I could take your pain away. The next few days will probably pass in a blur, as you make funeral arrangements and deal with your mum's affairs, but rest assured that I am still here for you and, I am here any time you want to talk.

    Thinking of you and your family.

    Jolamine xx

  • Hi Sigill79, this is my first post on here too as I'm trying anything to ease the suffering my Dad is going through. You sound like a really nice person, caring for your mum & you have your own health problems too. Your mum sounds like she is suffering from side effects of chemotherapy. My Dad is 84 & was like your mum, fit as a fiddle. He worked until he was 78 years old in the building trade. So your mum might be strong enough for next round of chemo because she is fit even though she feels fatigued. My dad is stage 4 palliative care chemo & radio. Unfortunately, they caught my Dads stomach cancer too late & it has spread to his spleen & pancreas & more worryingly in his spinal cord near vital nerves so might lose the use of his legs. Can I ask, is your eating & drinking? Try everything to try to build your mum's strength back up. My Dad has stopped eating & won't drink anything now, not even a cup tea because the steroids have stopped working & everything is making him feel sick. But because he has looked after his body all these, he is some how still fit enough for each chemo session. I think your mum has age on her side & is fit apart from the cancer so hopefully she will bounce back. I would ring McMillan & nutritionists to get advice. That is what I'm going to do on Monday morning because my Dad is only suffering now and he isn't receiving proper palliative care. Please keep me updated. Although this is an absolute horrific subject, it's good to talk. 

  • Hi Jolamine, thank you for your kind words. I do appreciate that we could be with her at the end. It's what she wanted and I know at this terrible time lots of people are unable to be with their loved ones. I am thankful for that. If mum had of been stuck in hospital I don't know what I would have done. I was out of my mind with worry. 

    My mum was so strong and battled right up till the end, she's my hero. I did want her to stay but I know that is selfish. She needed to rest and we had to let her go. The worst thing I can think of is her in pain so I know it was time even though it's so hard to let go. I didn't feel ready but I'm sure no one ever does. It was difficult with the funeral directors, I know they have a job to do but it felt awful to let her leave. I wanted to be with her and protect her but I know I did that as best I could. I am trying to be strong. The first day was tough, I couldn't stop crying. Today has been a little less. I know this is a long road and to just take each day as it comes. It's too much to look too far ahead now, I can't get my head around her not being here. I know she is looking over me and I am sure that she will guide me wherever I am.

    I do want to thank you Jolamine, you have been a tower of strength at a time when I was lost. Your support helped me feel like I wasn't lost and alone. What you did means so much to me and I will always be grateful for your support. I do imagine there will be lots of things going on. There's already phone calls and things that need to be sorted. I don't think you get a time to stop and reflect until after. I am going to try and stay as positive as possible and just take one day at a time. Thank you again Jolamine, your continued support means so much. X

    Simon

     

     

     

     

  • Hi Mark1978, so sorry to hear about your father. I wish you all the best and hope that the chemo does give him some strength. This is a terrible time and it is difficult to cope. Unfortunately my mum passed away 2 days ago. She battled as much as she could but she was too tired and we had to let her go. I wish you well with your father and hope you manage to get him the proper care he needs. All the best.

    Simon

     

  • I am so sorry to hear about my your mum passing. It's greatly appreciated that you took the time time to message when you must be heart broken. Take care Simon

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    Hi Simon,

    I must confess that I felt like you when my mum died. I didn’t want her to go, but I couldn’t let her suffer and was glad that she was no longer in pain. Unfortunately, her pain was not well managed, even in the hospice and, I didn’t know enough about cancer at the time, to ask for more help. Eventually, a nurse told me that she felt that mum was suffering more than she was letting on. When I agreed, she asked if I would mind if she gave her an injection. This did ease her pain, but she died 2 hours later.

    Don’t worry about crying so much. This is a good stress reliever and will help you to cope at the moment. The tears will gradually fade with time, but there is no hurry. You said ‘I know that she is looking over me and I am sure that she will guide me wherever I am.’ I felt like this too and, if you can hold on to that thought in all you do, you will cope with all that life throws at you from here on, as she will be in your heart forever.

    I expect that you won’t have arranged the funeral yet, but I hope that you can hold it soon, as we all dread having to meet family and friends for such an occasion and you cannot really start to grieve until that is behind you.

    I imagine that the house seems very quiet and empty at present and it will take time to get used to this. You will find it strange when the hospital bed goes back and the carers are no longer coming, but never feel that you are lost or alone. from what I have got to know of you in the short time we've corresponded, I know that you are a lot stronger than you think and, I am sure that you will continue to make your mum proud in the years to come.

    Thinking of you.

    Jolamine xx

  • Hi Jolamine, I'm really sorry that your mum had to go through that. It's really hard to know what to do, you care about them so much and you don't want them to be in pain and yet you can't let them go. I'm so sorry that your mum was in pain. Mums are so tough that they never let on about what they are going through. Whenever I asked my mum how she was she would say I'm alright. She was always trying to protect me and I imagine your mum will be doing the same for you. I'm glad she did get some pain relief but I know that's no consolation as you lost her 2 hours later. I'm so sorry.

    The tears do come and they are very random. The slightest thing can set you off and yet other times you feel more in control. I think as you said there is a certain numbness at the moment. I don't quite feel like it's all happening, it feels like I'm not really there. I do believe mum is watching over me. I will hold on to that as I know she will give me the strength to get through this no matter how hard it gets. Yes the funeral hasn't been arranged yet, I believe it will be hopefully organised this week. I don't think you can properly grieve either, too many things going on at the moment. I know once the funeral is over it will fully hit me then. I'm not looking forward to the funeral, I feel like I will break down. I know I need to do it for my mum though.

    Thank you again for your caring words. It does feel very empty at the moment. I didn't mind the bed staying the first night but I'm not sure its helping now. I think mum is in the sky looking over me so the bed doesn't really signify anything now. It will be very different once everything has gone though and nobody comes round. I think that's when I will need to be really strong. Thanks Jolamine, that is really nice of you. I don't feel strong but I'm sure with my mum with me I will get through this. My mum always said I will get through this and I want to try and make her proud and show her I can do it. Thank you so much. X

    Simon 

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    HI Simon,

    I only wish that I had known as much about cancer when my mum was alive as I do now. This has only come with personal experience and 2 bouts of breast cancer in the past 11 years. I am fortunate in that I am still living a busy and fulfilled life. Both of our mums seem to have been very strong right to the end. Sadly, mum wasn't in the hospice long enough for her care team to get to know her properly and, she never let on just how much pain she was in. Knowing her as I did, I could see it in her eyes.

    Don't worry how random your tears are at the moment. Sometimes, it's the slightest thing that will set you off. Still, you need this release valve to stop you breaking down altogether. You will find a certain numbness at present, yes, but you will also be in denial that she has gone, to some extent. It probably feels at times as if it is happening to someone else and you are just looking on.

    I doubt that the bed will be left in the house for long. My mum-in-law's bed was removed just 2 days after she died. I was glad, because I think that my father-in-law found it hard to cope with it being there afterwards.

    None of us look forward to a funeral, especially for someone you hold so dear to you. You will get through it for your mum's sake and, I am sure that you will do her proud. Have you thought bout what type of funeral you want for her, or what readings, hymns/songs you would like? Are you going to have someone to stand up and say something about her life, or are you going to leave this to the celebrant? There are a lot of things that you could be thinking of in advance of booking the funeral.

    You are right that the hard time will come afterwards, when the house is quiet and there are no carers popping in, but you will cope with this. Don't look too far ahead for now. Take things day by day, or even hour by hour, if need be.

    Take care.

    Jolamine xx

     

  • Hi Jolamine, I'm so sorry to hear that. You sound like a very strong person to go through what you have. I'm glad you are doing ok although I'm sure it is very tough. My thoughts are with you and I hope you continue to be ok. It is very difficult isn't it. We are very lucky now to have so much informatIon available to us. Sometimes it almost feels like too much but I'm glad it's there. There are also very kind people like yourself that help me through this and explain what may happen through experience. I can only imagine how hard it was for you when you didn't have access to any help. I think your mum does always hide pain but as you said you do know when something isn't right and you can tell with the eyes.

    It really does at times, it's almost like it's not really happened. I've gone through it but it's not quite real. The main thing I get is sudden waves of panic when I released what's happened. I  think it's too much to take in all at once, it's so final I can't even begin to wrap my head round it. I do understand when you say take it an hour at a time because you really don't know how you will feel from one minute to the next. It is a rollercoaster.

    They have said they are going to pick up the bed and the oxygen on Wednesday. I'm not sure how I will feel when it's gone but I know it probably doesn't help having it there as a constant reminder. I'm sorry your Father-In-Law found it difficult. Sometimes I think it helps and other times I think I'm just clinging on and need to let it go. I know my mum isn't there anymore, she's looking over me now so the bed doesn't really mean anything now.

    I am worried about the funeral but I will try and cope for mum. I don't want to break down although I know I will be devastated. My mum was never too fond of any hymns but my sister knows a song she would like so I said I'm happy with whatever she would like. I thought about standing up but I'm not sure I could do it without breaking down. I think we will leave it to the person who is doing the service. We unfortunately had a family member who passed away last year and there was a lady who did a really good service so I think my mum would like to have her do it if possible. There is a lot to think about, we are registering her death tomorrow so I think we will go down to the funeral directors then to finalise the details. Thank you so much for all your support Jolamine. X

    Simon 

     

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    Hi Simon,

    I'm glad to hear that they are picking up the bed and oxygen on Wednesday. It will seem strange at first, but the sooner it's done the better. I am sure that you will cope with the funeral, if only for your mum's sake. Don't worry about the possibility of breaking down. There is no shame if you do. Remember that this is all very 'new' to you. I am glad to hear that you know of a good celebrant. We has a humanist ceremony for both of my in-laws and the celebrant was really good.

    They were both keen ballroom dancers, so we played some of their favourite songs instead of hymns and then we read some poetry. There is no point in pushing yourself to speak if you don't feel that you could do it. What a lot of people do is to write down what they want to say. If they feel like speaking at the funeral on the day they can. If not the celebrant can say that this is what you want to say, provided that she has a copy in advance.

    If you are registering the death tomorrow, do you know about The Tell-us-once Service? It is worth looking at this before you go, as they can notify a lot of different people for you. If you want them to do this, you'll have to bring the necessary papers with you - this site will tell you more about it:-(www.gov.uk/.../organisations-you-need-to-contact-and-tell-us-once). You can also do this on-line afterwards, but if you have everything with you tomorrow, the registrar will do it all for you when you are there.

    I hope that you manage to get everything you need to get done tomorrow. I'm sure that you'll feel happier once you've got the funeral arranged.

    Kind regards,

    Jolamine xx