Mum doesn't want anymore chemo

Sorry to hear about your mother. I have the same cancer as your mother. I was lucky enough to have 2 liver operations last year despite COVID-19. The consultant thought he’d got rid of the tumours on my liver and I was expecting to have a bowel operation. However, tests over Christmas have shown that there are more tumours on my liver, so I won’t be having a bowel operation. I had 14 rounds of chemo before my operations, which worked really well. I’ve now started another course of chemo, which didn’t go well to start with, but they adjusted the drugs and it’s bearable. I can understand your mum not wanting any more treatment and you are respecting her wishes. I lost my mum just before I was diagnosed and we cried together when the hospital said she wouldn’t survive. Yes plan things with your mum when she feels well. We’ve booked a holiday with family including my 14 month old grandson in the summer and this is keeping me going. We haven’t been able to see famIly since Christmas because of COVID. I wish I could ease your pain.

Hello Emily-Grace, I am in a similar position as yourself except I am aged 56 and my husband is 72. It is my husband who has cancer and having been in remission once we (despite been told it could come back) mistakenly thought we were in the clear. However, not only has it come back but it has changed to a more aggressive form. We were told that a different version more intensive course of chemo would go ahead. After the fist cycle made little impact on the cancer but a huge impact on  the side effects the chemo was intensified for the second cycle with horrific side effects for my husband. This was made much worse by the fact that he had to remain hospitalised for 3 weeks to have daily doses of antibiotics,  transfusions of fluids, platelets and blood. All in all this was a very distressing time for both of us made worse due to the inability to see one another due to COVID. He managed to get discharged for a few days before cycle 3. However, after much discussion with his consultant and each other the extremely difficult decision was made to not proceed with further treatment as it was simply too much for his body to copy with and it would not give him a sustained period of remission. His first thoughts were for me, wanting to make sure everything is in order for me for afterwards, so great is his love and selflessness. Believe me I never know I could cry so much as we go down this journey.  The positive in all this is that many people do not have the opportunity to put their affairs in order, have the opportunity to ensure they do not leave things unsaid and say the goodbyes without regret. My husband and your Mum has that opportunity as painful as it is. My advice is do not feel guilty about your feelings be is sadness or happiness, our emotions are windows to the love we feel .  We only received confirmation on Tuesday last week and its a lot to process so we are taking it stage at a time. First my husband wanted to sort out our financial affairs, now he has raised the subject of where and how to have a service - as he says if he can do anything now to make it easier for me later he wants to. Overall I am allowing him to guide me with what he wants and when is ready to talk about things. But then that is the great thing about our relationship and marriage we have always made time and been able to communicate with one another; talking and listening. My husband prognosis is measured in weeks. It must be so difficult and yet different for each and every one of us who are left but he is under strict instructions to save a place for me next to him on his cloud cos he's not getting away from me. Together your mum and your will find your strength to get through this difficult and when the time is right you will have a life and a future of your own. There is no right way or wrong way to be, just simply allow yourself to be you. Thinking of you and your mum

I'm really sorry to hear that. It sounds like you're coping extremely well though. I feel like I can't really plan anything with my mum at the moment as she is so weak. The consultant gave her steroids to take for 12 days and she's been so much more alert already but I know when she comes off them she's going to crash. I'm hoping they may put her back on them again at some point. I would love to go away again with my mum but I just daren't book anything due to Covid and just how weak she is :(

I am so sorry to hear about your husband, especially as his prognosis is weeks. My mum is doing the same regarding finances etc. She's already paid for her funeral and today we were sorting out funeral music. It's so hard for me to go along with it all as I can't bear to think that I'm losing her but she has always been super organised so I know it makes her feel better getting everything in place now. You're completely right regarding us all having the time to prepare and say goodbye's. One of the hardest things for me to come to terms with is that my mum won't ever see me have children or get married. I have no siblings to turn to and I'm not that close to my father either so I feel very alone. My boyfriend has moved in with us to help me care for my mum but we've had many discussions regarding our future in front of my mum, jokey conversations about getting married and what our children will be called when we decide to have them but it's just so hard knowing she won't be there to see it all. She's honestly my best friend and absolute rock and I really don't know what I'm going to do without her. 

You're right to take it a stage at a time. That's what I'm doing- I'm also trying to keep a journal of the things we do each day so it's something to look back on about this special time. 

Take care and thank you for your reply x

Thank you for your support I am sure you will have already thought of this but how about creating a memory box with your mum knowing it can be shared with her future grandchildren or even to help you look back at remember the good times. At first (I know from having lost both my parents) it will be too painful to look into, but gradually bit by bit I found that I could look at it more and more. Yes each time the tears flowed and the paid was very hard, however over time the pain lessened I could look with fewer tears until eventually I realised the tears were of joy. Joy of having the privalage of having such amazing parents and love in my love. Don't forget that Macmillan are there too to help with home care but you need a medical referral from either a consultant or GP. My husband's consultant sent a letter to our GP and copy to us putting everything in writing. It was hard to see it in black and white but it confirmed the prognoses and that a referral for what the letter called "community input for his symptom management at home and will refer accordingly". The letter is dated 3rd February and I have heard nothing further so rang my GP and was told it could take two to three weeks for someone to call me and they couldnt confirm if it would be Macmillan, some other organisation or District Nurse. Neither my husband nor I want want him to be in hospital or a hospice but i do need help.at home to care for him as I am on my own. I have a frozen shoulder so taking even his reduced weight is a struggle as I am afraid that we may stumble and fall. I know everyone is overworked and there are so many too many people in need of care and support.  My advice is dont leave it too long to ask for help although it may be different in your area. You and your mum are fortunate to have each other.

Hi, Yes I may suggest that to my mum and see what she thinks. It must be so difficult for you to care for your husband especially with your frozen shoulder. I've struggled to lift my mum sometimes and she must only weigh around 7 stone maximum at the moment. I'm thankful my boyfriend is here as he can help me lift her if needed. 

The past couple of days have been really tough, hence me only just replying now. Mum suddenly started feeling really sick 2 days ago and she's taken some different anti sickness but it's just making her so drowsy, she's slurring her words more and today she has slept solidly all day. I'm so worried these are signs that she doesn't have long left. 

Take care xx

I am sorry to hear about your mum's situation. The sickness is awful, I know my husband keeps feeling and wanting to be sick but he is not eating and has nothing to bring but nonetheless he keeps retching which is awful to hear and awful for him. At long last we have the support we need. Eventually on Thursday I managed to get through on the phone to his specialist cancer nurse who said she would ring macmillan herself and that I should hear within 24 hours. Sure enough the following morning I got a phone call and then a visit that afternoon to assess what was needed. Now today we have equipment, medications and macmillan also arranged for district nurses to come and so we also have what they call a care package in place. The district nurses arrange for someone to come and help with personal care which can be daily or on a number of days as agreed. I have found that on the NHS website there is information to explain what to expect at end of life and although it can be distressing reading I find it good to be prepared. My husband has acknowledged and accepted his situation and everything is now in place, from financial to agreed funeral arrangements. At his instigation we discussed what he wanted and although a painful conversation we have always prided ourselves in our ability to communicate with one another well which has certainly helped in this situation. He is now ready to go, not to leave me, but knowing that things are in order he can do with peace of mind. I have told him that I will never be ready for him to go but that I dont want him to hang on to linger in pain, distress or discomfort for my sake as I will have to face it whenever. Like you I think it wont be long and the lady from Macmillan confirmed that from her observations and experiences he has begun the first stages of dying and she was horrified that. Its hard for me to think that and hard to type it. My advice for what it is worth is to speak to your mum when she is coherent and discuss getting Macmillan involved sooner rather than later. My thoughts are with you. I send you hugs.

Hi Emily-grace,

I am so sorry to hear about your mum. This must be so hard for you to deal with. I’m sort of in the same position as you. My aunt has secondary spine and brain cancer and her progonosis is a few weeks. She’s like a mum to me and has refused any treatment to control her symptoms. At first I took this really badly but then I realised that she only wants to be happy and comfortable for the time she has left rather than be tugged and pulled about. It will be hard for you Emily but just remember that it’s what she wants and you just have to make her happy and comfortable and enjoy every day with her. It’s so hard trying to make things happy for her when all you want to do is cry, trust me in exactly the same. I want to make my aunt laugh and happy all the time but all I want to do is scream. Ever need a chat message me. I’m the same age as you and I can completely understand what your going through. Stay strong babe x 

Hi Elle, thank you for your message. I'm so so sorry about your Aunt. It's so hard watching someone you love suffering. The issue we have is this past week mum has deteriorated so quickly and we're not sure if it's a blip with her meds or if it's the beginning of the end. 

I'm really struggling because she's sleeping all the time so she's not being able to enjoy life at the minute. She keeps saying she wants it to be over as she has no quality of life at all at the moment. I'm just trying to keep her as comfortable as possible but she feels sick and in pain. She's also been having mild hallucinations aswell which is difficult for me to watch but I'm just trying to stay strong. It sounds like you're coping incredibly well though and yes also feel free to send me a message too. We're in this together xx

Hi,

Thank you so much. We got a hospital bed delivered this morning which should hopefully help my mum and we also have a commode too. Our stairs are really steep so it should save her having to treck up and down to go to bed or to the toilet. She's in so much pain and feels so sick and I just feel helpless. The GP came out yesterday and said it may well be a blip with her meds but the symptoms my mum has do happen anyway as the cancer continues to grow. It's just so hard. Sending you my love xx