My mum was diagnosed with secondary breast cancer in March 2022. It was in her peritoneum, omentum and lymph nodes. She had to have an ileostomy due to a bowel blockage caused by the cancer.
She started capecitabine but it didn't work. She only did 2.5 lots of capecitabine as on the third time of having it, we all got covid and she couldn't stop being sick. She ended up in hospital and I think really she went downhill from there.
Because capecitabine didn't do anything, my mum ended up with skin mets and pleural effusion. She then moved on to paclitaxel but only managed to have one dose of it.
She kept having to go into hospital because her ileostomy stopped working due to blockages. Every hospital stay, she seemed to get worse and worse.
Last week she had to have her lung drained and ascites drained. She came home and couldn't walk up the stairs, she had to be carried. She had lost so much weight. One of her eyes had started to bulge and her vision was blurry.
She came home from hospital this Monday just gone and on the Tuesday I rung the macmillan nurse because I was so worried at how weak she had become.
The macmillan nurse spoke to the oncologist and on Wednesday he had my mum do an urgent head scan because of her eyes. The scan showed inflammation behind her eyes which he said was clearly cancer. The oncologist said he could see how much worse she had got and she was too sick for further chemo. He said to take the steroids she had and if she did improve a great deal then she could try chemo again next week but he very much doubted she would be well enough. He said I think you are coming to the end of your life.
I broke down. My mum started soothing me and saying it was OK. My mum was quiet and calm. She just said can we go home now. We spoke to the macmillan nurse after and she asked my mum how she would feel about a hospice because getting around at home was becoming so difficult. Mum agreed, she said maybe just for a few days. I asked my mum why she was so calm, was it because she was in shock or had had enough and she said she was just tired of it all.
In private, the macmillan nurse told me she thought my mum had only weeks (I asked her this when we were away from my mum for a minute)
I was so shocked. I couldn't believe what we had been told. When I was strapping my mum into the car, I started crying on her shoulder and said please can you just not leave me. She said I'm not going to.
We went home (my house as my mum had been staying with me since March and I had been looking after her the best I could) we took a longer way home, a way my mum loved to go. My brother had to come round and carry her upstairs. She said thank you to us and we said she didn't need to thank us, we wanted to help her and we loved her. We got her in bed and she asked me to go and get her a bottle of rhubarb gin from the shops which I did. She managed a small amount. She also asked for a few gulps of double cream, she loved fresh cream.
I kept asking if she wanted me to sit in the bedroom with her but she kept saying no.
That evening, she began bringing up brown vomit. She had had it before so I didn't think anything would become of it. But it got worse and I had to ring 111. They took about 5 hours to send a Dr out!! The Dr gave my mum some morphine and something to stop her being sick. My mum also had to agree to a dnar before he could give her it. The injection stopped the sickness but I felt so bad because she was laying naked in a dirty bed. The bed had the brown sick in a few different areas. All I could do was get my mum to sit forward so I could put a clean sheet on top of it all so she wasn't laying in it. My plan was to get her in the chair and do all the bedding and give her a proper wash when my brother arrived. I was too scared to do it alone incase she fell or something. I did wash her mouth but she asked me to stop. I kept asking if she wanted me to sit in the room with her and she kept saying no.
So the Dr came about 4.50am. I gave my mum a kiss on her head and told her I was proud of her after he had gone. I again asked if she wanted me in there but she said no. I checked on her again a couple more times, the last time being about 7.45 am. I asked her if she wanted anything and she said no she just needed to sleep, I asked her if she wanted me to sit in there and she said no.
My brother arrived at about 8.20am and went to check on. I heard him say "mum, mum, mum" in a frantic tone. She was gone. He came down and told me I broke down. I couldn't believe it. How can someone go so quick? They said weeks.
I had my brother check her again because I couldn't believe it. I called my husband to come back and he checked. She was really gone.
My teenage son was still asleep so my husband woke him and took him to his aunties. We told him nan had gotten worse and needed to go to the hospice so he was going to his aunties so he didn't have to see her being taken out. I couldn't tell him she had passed away in the room next to him. Later on we told him nan had gone to the hospice and had some medicine and fallen asleep and not woken up.
We had to wait hours for the undertakers to be given permission to take mum. It was hell. I did go in and see her a few times. I asked her if she would wake up, I said sorry that I had let her down, I told her how much I loved her, I pleaded with her not to leave.
I don't know how to cope now. My mum was my best friend. She was the person I always wanted to spend time with. She was everything.
I have so much guilt. I struggled to care for her sometimes and would feel resentful. I never told her that obviously. The last few weeks I have been trying to encourage her to do more for herself because I wanted her to get some independence back. I didn't know she was so close to passing away.
I feel awful that she died alone. I should have insisted on being there. The thought of her being alone breaks me in half.
I feel so guilty she had dirty sheets under her. I was too scared to get her up alone so there was the brown vomit on the bed. I tried my best to cover it up with a clean cover so she was laying on that instead.
I can't stop picturing her in the last days and weeks. I used to work in care. I should have realised how near the end she was.
I'm also so angry at the hospital ward she was on last week. How did none of them realise how ill she was? It took me ringing the macmillan nurse. I feel she suffered more because I didn't have the support in place. If I had known how ill she was, I would have asked for support earlier. I would have spoke to my mum about a hospice before. I don't know how I didn't realise how downhill she had gone. I still had right to the end that chemo would somehow work.
I don't know how I'm going to go on now. I can't live without my mum. I don't know how to do it. I don't know how I can live in my house when my mum suffered in there so much. I don't know how to get over how I failed her. I should never have left her alone, I should have realised how ill she was.
I just need to get this out. I don't know how to cope.
I'm never going to be able to get rid of this guilt, I'm never going to be able to go back and do things differently, I let her down. I'm never going to be able to take back all the suffering she went through. This is unbearable. I'm never going to see my mum again, how will I ever come to terms with that?
