Lost and alone - please help

Hi,

I don't have the answers to all your questions but just wanted to say that I'm glad you reached out. You're not alone. There are lots of lovely people on this forum,  some diagnosed with oesophageal cancer like myself, and some are supporting family members. I think all of us will recognise your feelings. It's a very difficult time, you've got so many emotions all at once and so much spinning round in your head. Try to take time for yourself too. 

Does your mum have a specialist nurse that you can talk to about what will happen if the chemo stops? When is her next appt with her oncologist? Make a list of questions to ask them. I've read on here about immunotherapy but I don't know if it's relevant to your mum's situation. Have you considered ringing the Macmillan helpline for support, they're there for family too. 

Keep in touch x

Hello there. My heart goes out to you. You are so brave to come onto the forum and express your grief and anxiety. You will find nothing but positivity and understanding from people on this forum. I was diagnosed last May and can understand the anxiety your Mum and yourself are feeling. The way I coped early on was to read the success stories of people who had found themselves in this awful situation. There are some remarkable stories out there. Have you looked at the Oesophageal Patient Association website? I concentrated on this and the Macmillan site. The other lady who responded to you is right - contact Macmillan or your Mum’s nurse or the Oncology nurses. They are great and can often help you find help and someone to talk to. I don’t know how your Mum is physically, but I honestly found that even a short walk would often pick me up, just being outside and walking helped me a lot. I also found breathing exercises, especially at nighttime, helped me feel calmer (I used the ‘Headspace’ app). It is most definitely a positive that the lesions have reduced in size. Perhaps your local Macmillan Nurse can talk to you further about this. Anything you can do together will be time well spent whether that is going for a short walk, watching TV or doing a jigsaw together. You sound like you are a wonderful daughter. You have done the right thing by using this site, but you may also benefit personally from speaking to your GP or visiting a Maggie’s Centre which many of the larger hospitals run. Take care, and will be thinking of you. 

Hello,

Just reaching out to give support as I am supporting my 53 year old husband who was also diagnosed, like your mother, with Oesophageal cancer in October 2023 and been in hospital since... from Friday 13th as it so happens.

We also have a daughter your age - aged 25 - and a son aged 26. As much as I love their zeal and energy and youth I would suggest not rushing your mother or planning too much - just simple gestures like a tea, or something simple to eat, or running her bath. Short walks, lunch out in a café, watching a film at home, listening to music, looking through family photo albums etc. She will be processing all this dreadfully sad news, evaluating her life, wondering if she has done enough for you and your brothers but life goes on. A family holiday, given the issues you mention, definitely sounds stressful! Also our generation were never so energetic as we just did not face near so many pressures as young people in their twenties do now.

Your mother can be an important source of emotional support to you too during this tough time - alleviating stresses in your life by offering the wisdom of her years on love, career, finances or whatever. This allows her time away from thinking about her own problems and a feeling of being valuable and appreciated as a mother that can lift her spirits and give her confidence in herself.

In the last three months I have spent more quality time that ever before alone with my husband so it sounds that you have precious time now alone with your mother when you don't have a husband or children also demanding your time. Your mother will be happy to hear your stories too - try to make time to go to the gym or cinema, shopping etc or out with friends etc .. these little things will brighten up your mother's day, hearing about your life, and knowing that you will be fine and happy, strong and independent when she is not around.

This beautiful time with your mother will always live on in you and in your personality  - her courage, humanism and strength now  - will be with you later as you bring up your children and you will have stories for them of your mother or directly from your mother that in the speed and chaos of today's world few of us ever get around to hearing.

I think all the questions about chemo and breaks in this will be given so much thought and care by medical staff and they do explain all this carefully to us. Ask these questions below of them.

However  I think the main thing is focusing on this lovely one-to-one time you have now with your mother to do simple, loving things. Your mother is so fortunate to have you, and you to have a mother that you love so much - such mother/child bonds are rare these days. My mother, aged 86, lives in another country - I see her once or twice a year and then rarely alone and only for a week or so - it has been this way since i was 18 when I left home and my native country to work in London. 

I think you have to allow adults/your brothers to make their own decisions as grieving and loss does cause such a turmoil of emotions about life, the shortness of life, our mortality, our aims for our life, questions on what is a life well-lived etc. And in winter 2024 this is all played out against a background of unimaginable barbarism, wars, economic pressures, sense of time lost over lockdown etc. Anyway it means you get your precious mother's wisdom and experience to yourself!

None of this will take away your pain and sense of loss at this dreadful news but hope it can bring some solace.. 

All my love 

Florence

Hello, 

I don't think you are an over thinker, you are a devoted daughter, who is petrified of what the future has in store, for Mum, and for you..

There is no way, I can advise you of what that may be,  but I can tell you that in May 2020 I was in a very similar place to you, but with my husband, who's Mets are similar also, Liver, Lymph Nodes, but also Lungs, Palliative care, no cure...  2020  .. nearly 4 years since diagnosis, and he is here, well (ish) and breaking all suggested prognosis.. 

I am rushing my response, ( for this I am sorry) but I wanted to let you know, there is always hope... Please pass that on to your Mum, you can read the blog I write, if you click on my picture into the profile, and if you do, I hope that you and Mum will find some positivity, which is important. 

If I can give you any further support, please reach out, 

Lowe'

I’m not sure how the forum works and whether or not all who have commented will be notified of this message, but I wanted to say Thankyou for taking time to respond so thoughtfully to me. I continue to search for your comments in my lowest moments.

2 months on and a lot has happened. My mum decided to get a stent fitted a week before our planned holiday which left her in so much pain we had to cancel it. We were all devastated, including my mum. We mentioned potentially going planning something else in the future to give my mum something to look forward too but I’m not sure if it’ll happen and I don’t want to put pressure on her.

its been almost 6 weeks since her stent placement and I’m writing this comment at 5:30am in her hospice room. We decided her to be admitted to help with symptom management - to get her off of her morphine drive and give her the ability to have more freedom which she lost completely the moment she decided on getting the stent. Whilst I’ve been heavily disappointed by the treatment she has recieved by the NHS at our local general hospital, the hospice care team is incredible! She’s been here for a week now. The first few days looked incredibly hopeful, her pain was being managed and she was eating!!! But on Monday she started a new chemotherapy (the tumors did end up starting to grow again) , docetaxel, which she isn’t responding well to, and it looks like she’ll be here for another week still. She doesn’t want to continue with chemo after experiencing these side effects which is disheartening.

i sent her a referral to the Christie a couple of weeks ago, we finally have an appointment with an oncologist there on Thursday and an appointment the same day with her usual oncologist. She doesn’t seem hopeful for the Christie centre anymore despite having a negative experience when she was admitted onto a ward in the general hospital for her stent placement. But I intend on asking as many questions as possible at both appointments to look at all her treatment options.

Most days are a struggle for me. I quit work to spend as much time as possible with my mum. I continue to struggle with managing the responsibilities I have taken on within our household, caring for my mum and coping with the guilt I feel whenever I am not with her (hence me sitting in the hospice whilst she sleeps). I feel waves of depression and grief hangover me daily. It’s taken a toll in all my relationships with friends, family and my partner. But the bad times are balanced by the incredible memories I get to make with my mum that I know I’ll treasure for the rest on my life. Simple pleasures of going to the cinema, watching films, gossiping and even sitting in silence go along way. I will be starting counselling which has been offered to me by the hospice which I look forward to.

Cancer is awful. It’s a constant feeling of no control and my heart bleeds for every single person on this forum who has to deal with it in one way or another. I hope everyone here recieves the peace and care that they deserve. Thankyou again to those who left me their support  

Hi there. Thank you for your message. I was wondering how your Mum was getting on.
We feel such gratitude for the kind people who put so much into helping us cope with our situation and you clearly feel this about the wonderful staff at the Hospice. I truly hope that you are shown the same care and consideration when you go the Christie on Thursday.

You are so right to be enjoying the simple pleasures with your Mum, whom I’m sure is reassured by your love and devotion, and I hope that the counselling sessions will allow you to focus on yourself and give you support.

Never give up hope. With love, Julie

Hi, thank you for letting us know what's happening. I'm glad the hospice staff are being so kind and lovely. I'm sorry that treatment at your local NHS hospital has not been so good. I'm sure your mum appreciates everything you're doing for her. I'm glad you're already considering counselling because you need support too. I can understand how this situation is affecting all your relationships - you need to do what is right for you and your mum. I just wanted to send you a big hug and say keep in touch. We are all thinking of you and your lovely mum.  

Take care,

Amanda x

Thank you for having the strength to share with us all that is happening with Mum and with you, I am sorry that things have moved so fast and have not been positive.

Your Mum will be getting the best care possible in the hospice, it is vitally important that you ensure that you are accepting care that others are trying to provide to you.  All of the feeling of grief and depression are normal and understandable, as you process everything that is going on around you. 

There has been a great deal of change, very quickly,  not only with Mum, but with work, family, friends and Partner as you have mentioned, added also to by the much needed holiday for all that needed to be cancelled. You are exhausted, emotional and are dealing with things that in a perfect world, you should never have to deal with.  

I am glad that you will getting some counselling, this will be time for you, please try not to feel guilty when you are not with Mum, the few moments you take for you will give you the strength when you return to her. She would want you to look after you too. 

I do hope they find some treatment that Mum can cope with, that does not cause her to be in more pain or discomfort, you are in our thoughts 

Lowe'