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Feeling completely numb

Rubymoo
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Hi all. Well i never thought in my life that I'd ever be joining one of these forums. I bet a lot of you feel the same.  

I recently had the devastating news that my amazing beautiful mum has lung cancer and it has spread to her bones. She doesn't know and she asked not to know. I am completely devastated. I was told she may not last a year. She's my best friend and I just can't get my head around it all. I can't imagine her never being in my life. I feel completely numb. I feel guilty for even laughing. Im trying to keep myself "normal" only for my husband and children. Inside i feel like crumbling. I feel so angry yet I'm laughing and joking with friends and colleagues just to be "normal". She's not even aware. I mean I think deep down she knows but she doesn't know what's what. I just don't know what to do with myself and I just don't know how to be. Does anybody else feel the same? 

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    So sad to read this, can't imagine what you're going through tbh but just wanted you to know you are not alone...all I can say is try to let her see the kids and you as much as possible as this will probably mean so much to her and try your best to stay strong. Take care and look after yourself x

  • Offline in reply to Worried-daughter-in-law1981

    Thank you for replying. 

    I'm being strong for her. She's such a tough person. I'm just hoping this Christmas will be the best one ever. Xx

  • Offline in reply to Rubymoo

    It is very sad Rubymoo, or should I just say Ruby, I have terminal metastatic lung cancer. Which is also running riot in my entire blood system, stage 4 my prognosis was 6/8 months. I honestly said to my oncologist no not a chance at I going to die in that time it's not convenient. He did a biopsy which confirms once again it was cancer. I had, already had my left lung removed on October 2012 they felt sure the cancer was contained in the left upper lobe. It was September 2013 I was given the prognosis of 6/8 months with palliative chemo half that if I decided on no treatment. I went with palliative chemo. After the demons lot I pulled out the chemo was killing me wicket than the cancer. I can always remember saying no cancer will not kill me. I did not shed one tear or ask why me. I literally said no not going to let it. Well here I still am after having donated blood to cancer research. Where some was sent to America, Canada, Germany and of course the Uk one thing only they can agree on. Is I should not actually be hear. Why I am I have baffled the cancer world. I don't have a clue myself. I know I meant what I said about I refuse to let cancer get the better of me. Now all the scientists who have played around in different ways researching my blood can also not understand why. They are literally starting to think it maybe the case that my own refusal to let cancer kill me is working. So 6 years later I am still here. Leaving everyone so baffled, oh it came back I said it all again wow and behold, I had immunotherapy. Where I did respond too. I had to pull out of that after 7 months. With a partial response, my last scan last month showed maintained response, when it comes back. I will say and mean it again about cancer not going to kill me now my darling although I said I refuse to let cancer kill me, I meant it however cancer is cancer. I still had to live on the basis of 6/8 months. Not thorough any of that time did I want anyone to put there life's on hold for me, I actually laughed a lot about my predicament believe it or not, having a wicked sentof humour I found I could laugh at the dark side too, me being  late for my own funeral, because I would have to do my hair and make up first. Which is a standing joke about myself. I was pregnant and my waters broke at home. I didn't say anything at first I just got my makeup box and stuff for my hair. When my husband said what are you doing I told him my waters had broken and I was doing hair and make up to go to the hospital, he phoned my mum to come look after my other 4 children and he starts telling my mum she's only doing her hair and make up before she goes she said she would make her way over he told me my mum was going mad, I asked him if he could get me some clean towels the water suddenly started gushing again. I asked him to make me a coffee. So things like that I was saying well

    judt remember what happens I will have to do hair and make up first. So yes I do have a dark humour. I did not want to surround myself with morbid people for the time I had left I wanted laughter lots of. Now at the same time, not everyone can stay strong,  for those that couldn't I did say come and talk to me, my daughter at 18 she went in denial she would wait until she havd been drinking not heavy just enough to loosen her tounge she would crawl into bed put her arms around my and start crying promising me anything I wanted she promised never to do any wrong as long as I didn't die. I told her I had to go when my timr was up it's how I believed how things happened, she kept begging me to promise I would not die now I could not do that she would leave my bed in tears and tell me she loved me. The amount of times she had me in tears, there ste no rules on how we deal with it. There's no right or wrong way either. You Said your mum didn't want to know  do your carrying a lot on your shoulders. You don't have to stay strong in front of your husband do you. Let him in and help you .also do not feel bad for having a laugh still, chat to your mum, I am not saying tell her. But you can ask her what she thinks,  you don't have to tell her. Unless she outright asks you. You say you think she may know. She will know somethings wrong, but have you ever thought her imagination could be running wild with all sorts of cancers all over her body so I personally would sit her down and just say mum what dio you think about being ill. Let her tell you. It might help her to tell you, although not still wanting to know. She does need to talk about what she thinks. That could help her more than you realise. You don't have to tell her though if that's what' she still wants. Have you discussed immunotherapy with a consultant. Everything is worth asking, some of the immunotherapys are having some seriously awesome major affects on some people, people with lung, brain, liver, cancers are suddenly disappearing. So honestly do not write of anything, maybe there's a trial she might be eligible for, just remember immunotherapy was for urin tract cancer to start with, I was asked to go into a trial of keytrud. Pembro for short, however for some reason I was due to havd a brain scan only yo me told I could no longer go into trails.  In a trial everything is tested. It's actually tested more than other drugs,  so please please just don't give up ok. Ps keep me informed please. Of if ever yoh facy s chat I am here ok 

    best wishes Marj xxxxxc

  • Offline in reply to marj58

    Hi  Marj

    Thank you for your message. 

    You are amazing. I can't imagine everything you've been through. I think you're an inspiration to everyone who is fighting cancer. I asked her indirectly would she like to go back for anymore appointments. She declined. I know that's her final answer now so I don't want to push. My hubby has been amazing he just can't do enough for her. I think with my mum she just wants everything to be the same. Getting on with normal day things. Treatment is completely out of the question as i can't force her. So I'm making the most of the time we have. We still laugh all the time and still enjoy our daily gossip. Im protecting my children from any morbidness as this will make them look at there nan different and that's the last thing she'd ever want. Time could be any time really. I suppose it's upto her how strong she can stay. I'm keeping positive. 

     

    Thank you Marj. Xxx

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    Hi Ruby. I'm sorry to hear about your mom's diagnosis. Similarly, my dad's lung cancer was also unexpected as he had no symptoms and he was not a smoker. Doctors found a 7cm tumor in his right lung. Dad was diagnosed with stage 4 non small cell lung cancer. While it had not yet spread to distant organs, it had spread to his chest wall and adrenal glands. We were told that his disease would require an aggressive treatment of both chemo and radiation which would only give him about 9-12 months but without treatment would be about 3-4 months. My family and I opted out of treatment as we preferred quality over quantity. We didn't want dad to suffer through the treatment especially since he already suffered from dementia so he wouldn't understand why he is suffering. I never told him that he had lung cancer. As it advanced and he would cough, I reassured him that he just had a little cold and that he would be okay. I slept 35 days with my dad in the hospital. There was nothing more to be done for him. Dad was sent home with hospice and spent the next 30 days bedridden at home. We played movies, his favorite music, etc. His grandkids were there playing nearby so that could see snd hear them. It was bitter sweet. I reassured my dad over and over again that it was okay for him to "let go and go with God", and that we would all be okay, and I would take care of mom. From diagnosis to death was only 17 weeks. I took numerous pictures and videos throughout our journey together. I always put my hands on him and prayed for him. I would strongly recommend you make videos and get your mom's voice recorded. Let her tell you her favorite stories from when she was a young girl or how she met your dad, etc. These memories will be priceless some day. Say everything you want to say. FORGIVE. Leave nothing unsaid. All the best to you.

  • Offline in reply to rebvelaz83

    Rebvelaz83

    I'm so moved by your story. Thank you for your story. She's at the stage where she doesn't want any fuss. She doesn't want nurses or doctors. So I feel like im protecting her from anyone slipping up and upsetting her. Feel like her personal bodyguard. 

    I will do all the things you said because i speak to her practically every day. Dread the day she's not here and she's giving me advice or just telling me to pick myself up. Will miss her voice. She's literally the centre to my family. She's the matriarch. 

    I'm sorry you lost your dad. I haven't got my dad anymore either so the thought of having no parents eats me up. Even though I have my own family i still feel like a little girl around my mum. She still treats me like her little girl and i absolutely love it. I'll miss that. She's the best mum. Xxx

  • Offline in reply to Rubymoo

    Hello again, Ruby. You are absolutely right, you are your mother's bodyguard. You are also her advocate as you will fight through this journey with her. It is important that you become her legal power of attorney and her medical directive to make decisions in and outside of the hospital in the event that your mom cannot. I know that it is hard to think about let alone speak about but you need to ask your mom her final wishes in a worst case scenario. For instance, would she like to be resuscitated? Granted, it will most likely never come down to that BUT you meed to be prepared to make decisions based on her wishes and not on anyone else's. My dad's lung cancer was already advanced in stage 4 and it was terminal. Although he was only 77, it didn't make sense to resuscitate in the event that he would be naturally passing away as that medical procedure can be very aggressive. My uncle was resuscitated and not only did doctors place tubes down his throat and through his neck but his ribs were broken during the chest compressions. He was placed on life support and died anyway so I personally would not have opted to resuscitate my dad as he would've wanted the Lord to take him peacefully which is how he passed. You would need to know if your nom prefers to be buried or cremated, etc. I apologize for going off topic but I am trying to emphasize the importance of getting those legal documents NOW, and you can obtain them in the hospital (for free), internet (also free) or some retail stores. Also, any attorney can draw them up for you as well (for a small fee). 

    Getting back to your response, if your mom doesn't want doctors and nurses in her face right now, respect her wishes to some extent but also don't completely avoid them as they can help your mom be more comfortable. I don't know exactly which stage of the cancer your mom has but you mentioned that it has spread to her bones. As the disease progresses, you want your mom to be as pain free as possible so you will need the assistance of medical professionals. As I previously mentioned, my dad was sent home with hospice coming to our residence however like your mom, my dad just wanted to rest comfortably and I didn't want our home to feel like a hospital with nurses constantly coming in and out so I had limited visitation to about twice per week or only as needed. You need to keep mom as comfortable as possible but like I said, do not deny her of medical care that will help her feel better.

    Also, you need NOT to dread the day that she is not here because I did that with my dad. It's a condition known as "anticpatory grievance" because you're grieving before the death occurs which I learned is unfair to both you and your mom because you are missing out on the fact that she is STILL HERE! So live in the moment although I know it's easier said than done but don't lose valuable time. I completely understand that your mom is the center of your family but I'm sure she is tired and wants to rest too. She took care of you and now it's your turn which is an honor to care for a parent.

    Thank you as well for your kind words about my dad. Truly, I feel EXACTLY like you when you said that you still feel like a little girl around your mom. When my dad passed 2 years ago, I was 34 years old yet I still felt like a little girl who needed her daddy. We are never too old to feel this way. It means we were blessed to have such lovely parents. I too am dreading having no parents. My mom was recently hospitalized  and diagnosed with congestive heart failure. I believe it was due to a broken heart because she still cries for my dad almost everyday. I feel like after my mom passes, my lonliness is going to get even worse! I don't have a spouse or children so I will really feel alone but we always gave God! Sometimes when I think that my dad was taken from me too soon, I read other people's stories who lost their parents in their teens and twenties then I realize I'm blessed to have had him in my life for as long as I did.  My dad will never meet my potential future husband or kids (only spiritually), and my mother is always asking for a grandchild which she might never get from me so you are very blessed for your mom to have met your children.

    Stay head strong, fight for mom and try not to cry infront of her. Try to make it joyful. Play her favorite music dance a little (if possible), pray togetheror just pray out loud for her, watch favorite shows together, look at pictures, hold her hand, let her know she has been the best mom ever, etc. Keep her comfortable and remember to get power of attorney right away. Have faith! Take care of yourself first so that you can care for mom. Bless you and your family. 

  • Offline in reply to Rubymoo

    Hi Ruby, sorry it's taken me awhile to get back to you. I have had a chest infection. I can fully understand  why you want to protect her. Also why she just wants things to go back to normal. One thing I will say. I am assuming she doesn't really talk a lot about her illness. However never underestimate the power of wanting to live. When I told my oncologist it was inconvenient to die within the time scale given. Plus everyone all coming to the same conclusion. I should have died. I knew I would not pass away. I realky was so so determined to fight with everything I had. I like your mum did not ask for this vile disease. No one does. We all carry cancer through our body. It if it triggers or not. What causes it to trigger. I know in my case. It's a genetic twist. That's between our parents that's actually triggered it. What I was going to say, I am one of 7 children a brother was diagnosed 4 and a half months prior to me. That was the first time cancer had ever arisen in both sides of the family. No one had ever been known to have had cancer. I noticed my brother who was diagnosed stage 4 lung, he cried but then gave up. Having been around this vile world of cancer now for so long. It's something I have noticed time and time again. Nearly everyone who gets told they have terminal cancer. Literally give up. That's what I didn't do. If anyone had have seen me that day as well as my sister. I am sure I would have given a few people a laugh not because of the prognosis. It was I took umbrage that cancer had invaded my lungs. How dare it. Seriously that's how I was how bloody dare you trigger, I did not ask you too. So you can just untrigger. I just don't know why. But seriously I really was how dare it. Who the heck do you think you are. This is me talking to the cancer. That's when I told my oncologist that no way was I going to die in that time period. I felt angry and really put out because something had the audacity to come into my body. Yes the audacity how dare it. Has I have told you, already the places and people who have studied my bloods only one thing they agree on I should have died. Now even they believe it was just my attitude towards it, it's the only possible reason I am still here. Now because your mum doesn't say to much, just try to get over to her in your own way. About fighting it. I mean really fighting it. I will be honest there have been times I just wanted to give up. Then all I kept thinking how dare it trigger. My brother said to me before he passed bless him. I guess I will be seeing you soon our Marj. I told him has much as I loved him I had no intention of going with him, I asked him to come back to us and fight. I was surprised he didn't actually. He said you can't fight it. It always gets you. I told him only if you lay it. If he could only just see me now. How long I have had extra to him. I think maybe he might of thought about fighting. I find that the moment cancer is heard people always just roll over, because we don't hear about people like myself often. Which I think the cancer world should tell people how many people have lived a lot longer. For not having given up. I know I can not be the only person who's literally refusing to die. Surly not. I do put mine down to fighting. Yet truthfully that's what I believe. But I do wonder sometimes. I wish you all the luck in the world to try to get your mum fighting. Who knows she could probably get a extra 6 years like I have. I hope and pray she does. You never know what's she's thinking. Hopefully she's quietly fighting. You are amazing person. Trying so hard to keep the morbidity away from the children, I am so pleased you have such a wonderful husband who's supporting you. My last paragraph to you, is literally do not underestimate the power of wanting to live. Urge your mum to fight please. The power to live is one of the most powerful instincts we have. It the most powerful. It just sometimes needs some help from ourselves. Keep me informed Ruby please. I am keeping everything possible crossed for your mum. Wether you believe in the powers of above not necessarily god. I am praying with all my heart and soul for you all. God bless you. 
    lots of love and best wishes Marj xxx

  • Offline in reply to rebvelaz83

    I don't know, if you already know this. Ruby I hope you read this actually I will send a copy to you. I have put a medical directive in place myself, that way no one has to fight for my rights. I put a DNR in place, because although it's myself dying, I felt much like you did about your dad. What is the point of resuscitating me, if I have a stroke. No food no water no treatment. Why have all that done if I am only going to die anyway. You can make a living will. Prior to dying. I genuinely went to my GP with in a week of prognosis. I told him I wanted to to put medical directives in place. That way they are all legal and above bored, should medical staff go against it and resuscitate. They will be in so much trouble and can be struck off for it. I asked my Gp to put it on National computer data base. So where ever I am in the uk, it can be seen my wishes. I am sorry about your dad I think you personally had the correct way of thinking. God bless you xxxx

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