From Diagnosis to Passing Away

Hi Everyone,

A little over 3 months ago I posted on here about caring for my mum who had Stage 4 Small Cell Lung Cancer. Now i am fully aware there are different sub sections of lung cancer but basically what my mum had was terminal.

On the 27th June 2015, my mum was given the diagnosis oh Lung Cancer, we was then passed on to an Oncologist who explained that mum would have to have Radiotherapy as she had 3 Brain mets and Chemoherapyfor the cancer in her right lung. Now me being me I am a research person, I can't help it and I can't stop it once I've started. When my mum was discharged from hospital in June we was given discharge papers which stated what staging my mum was. At no point when we met the oncologist did he mention how far along she was. I had to research myself and I told my sisters because they had no idea.

My mum never wanted to know anything I looked at or researched because she was adamant she was going to beat this as we was told 2 years and she would be fine?!

At this stage I handed my notice in and left my job as I felt I needed to be by my mums side all day every day. We went to Radiotherapy and from then on mum began to change, she was tired all the time. Slept a lot, didn't feel like eating unless I made her (which sounds terrible but the truth). Didn't want to go out and started to become really tired if we walked to the shops which without a doubt about 3 minutes from our house. She wasn't well.

Her birthday came, 18th August. Now my mum has always been the life of the party always the one arranging the party, and this year she didnt get out of bed. She would fall asleep holding my hand so tightly and when I thought it was safe to sneek away she would wake up and ask where I was going? She wanted me to be there every second of every day and I loved it. I loved spending the days snuggled in bed (litterally in bed) watching films we both love, making her dinner and getting her drinks, making sure she took the correct medication. Mum and I became closer than I ever thought we could be. We laughed and talked all day. I would sometimes feel like I needed a break but when I did go out or see my boyfriend, all I would want to do is go back and be with my mum.

On the 22nd August mum went into hospital as she contracted pnuemonia, she was very grey in the days before she went in and always saying she couldn't breathe. They put her on Oxygen and gave her Antibiotics and she started to get better. The oncologist knew she was in hospital and said she had to go for chemo otherwise it would just get worse. Now in my opinion, she wasn't strong enough for chemo but he pushed for it anyways. So she had the chemo and she wasn't herself. She couldn't wash herself and never asked a nurse to help, she waited for me to arrive and wanted me to do it, which of course I did because you do what your mother asks of you. She started losing her hair a lot and was incredibly weak.

On the saturday before she died, she fell and hit her head and the side of her back. As procedure they have to take blood and check your observations more regularly. The found the pnuemonia wasn't going away and she was susceptible to infection, so we was moved to a side room. August bank holiday Monday, she was being sick constantly and wouldnt eat or drink, begging for help because she was in pain but no nurses assisted, when we asked for help the Sister of the ward told us to go and wait our turn. All whilst my mum was begging for air whilst being on oxygen and in huge amounts of pain.

1st September 2015, I stayed over night on the monday and left early in the morning as I had to get some sleep and I knew my sister was coming around 8 am. I got home and went to sleep. About 11 am my brother in law was banging on the front door and ringing me, I answered and he said.. you need to come to the hospital. I arrived at the hospital to find half my family were in the room and my mum coughing up blood, her face was grey and puffy and he hands and feet were ice cold. She was dying. The doctors told us my mum has Sepis and that the next 36 hours were critical. Not once was she moved to a ICU or anything like that but kept on the respite ward. Mum was begging for air and was asking for us to open a window so she could breathe but kept taking her mask off, she was aggitated and didnt really recognise who was there and who wasn't.

At 2:55pm on the 1st September, my mum passed away with her family around her and love in her heart. She was/is my bestfriend and now she isn't here in body to watch me grow up and have children or get married. I feel like I can no longer go on, and I want to be with her. My life has changed dramaically and all i want is my mum to hold my hand.

Sorry this is extremely long but I just needed to tell my story... and this is actually only half of it. :(

  • Hi Kell, I'm so sorry to read about your Mom's experience with this terrible disease and then her passing away. My heart goes out to you as you are certainly taking this very hard. I hope writing down your feelings about your loss has helped somewhat becasue getting it out there is a healthy thing to do, rather than keeping it bottled up inside you. Also, people on this forum understand completely how you're feeling in this terrible loss. All of us on here are either dealing with our own cancer, or caring for someone with the disease, and also, most of us have lost loved ones due to cancer. You write that the care she received was not adequate to meet her needs, and from what you say, perhaps it wasn't. It seems like some people get good care and then others are not feeling that they did. I don't know what to say about that, but I'm sure it does happen at times, due to shortage of staff, or large numbers of people needing care. There never seems to be enough resources to go around for the large number of people needing them. I wish there was something I could say to help you with your loss, but I know it will take time for you to work through this grief of losing your Mom. It will get less difficult as time goes on and you will reach a day when you can start to remember the good things you had with your Mom.

    Come back on to the forum and continue to write about how you're feeling and over time, that will help you to come to terms with what has happened. I hope you and your family members can support one another through this difficult time.

    Sending you hugs.

    Lorraine

  • Hi Kell 

    I am so sorry for your loss. I too lost my daddy almost 4 weeks ago to lung cancer which spread to his bones. Diagnosed end of August 2015 and he died in respiratory clinic 15 October 2015. Diagnosis was too slow 4 months of running back and forward to gp and xrays, and all the time persistent cough and losing weight, tiredness and not eating. Daddy only got agigated 3 weeks before dying. Palliative care only going in that time and waiting over another week to get a hospital bed in his house. He had this for 88 days until he had to go into hospital. Oxygen and neubilizer didnt help at the end they just cannot breathe, hospitals in my opinion either leave them or leave it to the family to try and feed them. My daddy died with cancer but pneuomia was what killed him. I miss him every day as he done everything for me and Im 46 and a proper daddy's girl no man could measure up to him as my dad done everything and done it better. I feel lost at the moment even though I would love him back but not to suffer and they suffer, when he asked God to take him it broke us as a family. We as humans dont know how to say goodbye and it is not easy for an adult child to watch their parent die. At the moment I feel fractured pretty like yourself but I pray to God each day to help me get through as I have 2 children and they still need me. I hope some day like yourself to find peace and whilst I cannot take your hurt and pain away and wish I could. Please believe me when I say you will keep living and keep surviving there is a plan for all of us. We just have no idea what it is.

     

    Take care

    Olivia

  • Hi Olivia,

    Thankyou for your response, I guess for me it helps to put things into words. I really find it helps when i read other peoples posts and comments.

    Your experiance sounds very similar to mine, I guess I'm jsut angry at the minute and I praise you for finding the strength for your children. I wouldn't say i am coping amazingly well at the minute but i'm sure I will get there. I really appreciaite your response though.. even if it did make me cry.

    All the best,

    kelly x

  • Hello Kelli, sorry to read such an upsetting story, how fortunate your mum was to have such a lovely daughter. I have worked in the care industry and seen people at the end of their lives all alone, so sad. You were there for her and did your best, be proud of yourself..I found I had to research the Internet to find out more about my condition which  is not the best idea  and also had to read the discharge sheet from the hospital for info.I am so sorry that your Mum was not cared for well in hospital , have you made a complaint ?  I wish you all the best for the future. 

    Eileen 

     

     

  • Hi Eileen,

    Thank you for your response, i appreciate you taking the time to reply.

    If I'm honest I wouldnt even know the first step to complaining. I read some very horrible things and had to compare things i read on the internet to how my mum was it was a very eye opening. I wouldn't recommend it to anybody but I didn't listen when someone told me not to research.

    Best wishes,

    Kelly xx

  • Hi Kelly, you can get  info from CAB website, there are various ways to complain, writing to Chief ex of hospital. A friend of mine did this when she was angry about her mothers neglect at the end of her life. I have stage 4 cancer and I tend to avoid the prognosis bits as everyone is different and it is hard to predict how the cancer will progress.. The most important thing for me now is to spend as much time as I can with my family and you did all you could to be with your Mum and  I am sure that would have meant so much to her. Have a happy future and remember the happy times you shared.

    Eileen 

  • Hi Kelly, 

    I lost my Mum to small cell lung cancer in February, it still seems so unreal tbh... My mum dragged herself on for almost 2 years post diagnosis, but, in all honesty, I wish she had let herself go sooner. She was so very sick after the radiotherapy to her brain, she had seizures and dementia - sometimes shed ask me where I was, which as heartbreaking.

    I never got the chance to spend the quality time with her, as I was battling my own cancer too, and she was in a nursing home due to the dementia..I missed being with her at the end by a few minutes. I think she knew I was on my way and wanted to be alone...but I will always regret that I never said goodbye.

    The toughest days so far have been Mother's Day which was just 2 weeks after she died, my birthday and hers - which was 19th August. I'm her on,y child and I feel so alone now...nothing ever prepares you for this...

    My thoughts are with you, I hope, that like me, you will start to gain some peace from knowing that her pain is over and that she is at peace, but most of all that she knew you loved her xxx