Hi Everyone

I have been on this forum for hours every day for the past 7 weeks reading what feels like every post as I have struggled to come to terms with my mum's diagnosis, through her suffering, needs and finally saying goodbye to the most amazing person to ever walk this earth last week as she took her final breath with her children and grandchildren holding her hands.

I was in too much of a daze to ask anything or offer any help to others. Im sure like many, just having the opportunity to read so many experiences here and gather useful knowledge was a lifeline in the hardest time of my life. Now i feel ready to firstly offer my story for anyone who needs it and to also reply to some questions the best I can. I hope I can help in a small way in time.

Diagnosis - My mum had lung cancer with brain mets. It is so strange to say it even now, as around 7 weeks ago she was fit and driving all over the country doing the things she loved. I had a call one evening to say mum had not been able to move all day (stuck in bed) and my brother had to help her as she kept stumbling. After paramedics came out she was much better and she was told to see her GP. For 2 weeks, even with limited and declining mobility and memory my mum was told she had a b12 deficiency and 3x weekly injections were organised. I knew in my heart from all my research on sites such as this that there was something more seriously wrong. I insisted my brother take her to A&E as she was not improving and after a simple cognitve test there that she kept failing, they rushed her in for a CT scan that revealed the mass on the right side of her brain. It was a singular large suspected tumor. She then had another appointment 2 days later where they did an MRI and discovered the lung cancer but diagnosis was only listed as likely pending a biopsy. Due to bank holidays and strikes it took so long for the biopsy and although the steroids prescribed had stalled the worst of the decline, she was still slowly getting weaker each day and week. We had weeks of buying mobility aids, learning how to lift her, change her, sort out all the meds. We barely slept and mum was frustrated at not being able to just get up and do what she was able to do before. Finally the biopsy day came and she also had a lung function test that she struggled to pass. The day was ok though and we had good days and bad days for this period.

Pallative Care - I remember crying so hard the night before the biopsy results. I knew what was coming the next day, but in that moment, there was still a chance i was wrong. I still had some hope, even though i knew better. Being on skype with my family to hear the consultant say there is nothing they could do to save her was the most helpless feeling and seeing her cry was soul destroying. I knew it was coming but i have never wanted to be more wrong in my life. From the day of results, my mum lived a further 2 and a half weeks. They were the hardest days for my family. Her mobility reduced to only the use of her right weakend arm. My brothers and husband had to transfer her multiple times a day between bed/wheelchair/recliner and toilet. Lifting her for as long as they could while i got chairs and furniture in place before lowering her back The brain tumor and combo with the high dosage of steroids meant that she did not sleep much and had no concept of time/day etc. They also caused severe fluid retention that blistered all over her feet and lower legs. For 2 weeks she had what felt like half the pharmacy in pills to manage all the symptoms. We had limited help so we provided all the care for her icluding feeding, washing, changing etc. In the final week she was so fed up, she cried and begged the doctor to end it there and then (another soul destroying helpless moment). We did however manage to get the most amazing quality time with her. Going through all the photos, keepsakes. Endless visits from friends from all over the country and most importantly...I took the time to say goodbye. While she was still her, feeling ok and the brain tumor was not affecting her too deeply. Told her how much i loved her and how thankful I am for all she did for me and her treasures (her name for her grandchildren). She dedicated her whole life to us and she said at the end...having us was the greatest achievement of her life.

Active Dying/ Final days and hours - 4 days before she passed, there was a noticeable shift in deteriation. She refused food and drink and for the first time was in bed sleeping nearly the whole day. She was in so much pain, I spoke to our local GP and he came to see her and said it was time for a syringe driver. The nurse team was out within 2 hours and they had a tel number we could call any time of day if we were concerned or needed the nurses to come and check on her. They started on a low dose so in the final days I had them out to see my mum a lot as she was suffering so much with pain and needed regular increases. 3 days from death she was barely able to open her eyes, but was thirsty so we helped with a small syringe. She managed a few tablespoons. She was also delerious and calling out the wrong names for family. She was so brave and gave me many hugs and told me she would love me forever. The day before she passed we had to stop the fluids with the syringe as she was struggling to swallow so we used a moist sponge to wet her lips. She was sleeping a lot but would respond to touch and some brief interactions. I believe due to her nervous system being under stress she became extremely sensitive to touch and had near constant muscle spasming in her arms that were only noticeable when holding her hand. Her final morning - I went in to check her and i noticed the death rattle...not overly loud but there. She opened her eyes once and they were so glassy and teary. I knew the end was near. She was groaning and so i called the nurse to come out to give more pain relief. She did the max dose she could. That was at 12.15pm. She told me she thought it would not be in the next 24hrs. I don't know what it was but things all feel into place as they should. I sat in her room holding her hand. My older brother came in and sat close by. My husband and children came in quietly and i called my younger brother to tell him we don't have long. He arrived 30 mins later and we put John Lennon's imagine song on (Her favourite) and about half way through the song she took her final breath. No struggle, so peaceful and I kissed her forehead and told her how beautiful and brave she was and how we loved her so much and it is time for her to rest. She died at 4pm. The doctor came to certify and hour and a half later and the funeral providers collected her some 6 hours later. 

Im sorry I know this is a long thread and I have so much detailed info missing, but I just wanted to give the general timeline. I will hopefully do some more detailed posts about my experiences with each stage including some advice, but for now I just hope that if anyone is reading this that has found themselves forced on this same horrible journey, sending you the biggest virtual hug and thank you so much to all who came before in this forum. You have no idea how much all your words and advice helped me get through this. Much love x