Comfortable at home

A lot’s happened since I wrote my last blog. The bottom line is that Ive stopped active treatment against the secondary breast cancer I was diagnosed with in March 2019 and I’m comfortable at home with possibly just weeks left before I die.

That’s such a difficult thing to write and a difficult thing to be living with but I can’t hide from it any longer. And it means I can have those very tender conversations with my beloved husband, sons, brothers, nieces and nephews, friends, colleagues and so many others. I can let everyone know what stage I’m at on my journey through this life.

I’ve had the support of my oncologist and her team every step of the way and frankly I can’t believe I’ve had three such good years since my diagnosis. I can’t thank her enough.

The cancer that was advancing through my body has, sadly, spread even further. In addition to the courses of chemotherapy I’ve been receiving, I’ve also had whole brain radiotherapy. There’s one further chemo available but I’m assured it won’t work and the side effects are brutal.

So for the last couple of weeks it’s been end of life care – at home. I now live downstairs, with all the medical paraphernalia that entails, including the marvellous 24/7 syringe driver that provides me with constant and continual pain relief and anti-nausea treatment.

At various critical times throughout the day, I take steroids to reduce the swelling in the brain, three or four different laxatives to tackle the constipation that the antinausea drug in the syringe driver causes and, critically, an anti-epileptic to deal with any seizures. I have blurred vision, which makes things very difficult. I can only see with any clarity at all things that are at about 8 inches away. If you come and visit me, I’ll only know it’s you by your voice unless you’re within that sweet spot. But at least I’m at home.

It took a long time to get me here from hospital; my last stay, when I was very ill, lasted two weeks. I realised I could die in hospital and I didn’t want that. But they couldn’t discharge me with the symptoms I had as they could only be treated in hospital. I won’t go into detail but I had great difficulty keeping down food and fluids, along with various other serious issues that thankfully have now been addressed. Now I have a team of carers who come in the morning to wash and dress me for the day, the evening to wash me and get me ready for bed so that I will sleep comfortably and during the day to replace the syringe driver when it’s nearly empty. All this had to be in place before I could be at home.

The healthcare teams were amazing in getting me well enough to come home. This time two weeks ago there were days when I barely knew what a phone was.

I am now under the fantastic care of the local hospice. I don’t want to be resuscitated if it gets to the stage where that’s an option. I’ve told my nearest and dearest there’s no need to feel guilty if they choose not to be there or indeed if they want to there but can’t make it. I will either die at home or at the hospice – but not in hospital. 

Life has been so, so good but it’s time to let nature take its course. Accepting that and letting everyone know is such a relief. I’ve had so many beautiful visits, messages and gifts from friends and relatives. They all agree that carrying this knowledge is much better than getting a surprise email or phone call bearing the sad news that I’ve just died. We’ve been able to celebrate our relationships with each other in a way that wouldn’t have been possible had I not been so frank. Friends have weeded and tidied my garden for me; they’ve massaged my feet and hands; they’ve painted my nails; they’ve brought frozen strawberry daiquiris; or we have simply just revelled in each other’s presence.

Those of you who follow my blog may remember I wrote about a wonderful country music song called Bring my Flowers Now (While I’m Living). That’s what’s happening now. I’m genuinely living “with death in mind” and hope that I will have a good death. 

I don’t know if I’m going to be able to continue with this blog for much longer. So let me say now how thankful I am to you all for reading it over the years and for your support. It’s been an important part of my cancer journey, allowing me to organise my thoughts and emotions. Living with advanced cancer is hard, but if what I’ve written has helped any of you, then I’m humbled and grateful.

31 thoughts on “Comfortable at home

  1. Thank you for this wonderful blog and for being so honest and open. I wish you a peaceful and a good end of life.
    If I should go tomorrow
    It would never be goodbye,
    For I have left my heart with you,
    So don’t you ever cry.
    The love that’s deep within me,
    Shall reach you from the stars,
    You’ll feel it from the heavens,
    And it will heal the scars.

    Liked by 1 person

  2. I am so sorry to read this Maureen. I was wondering how you were as you not heard from you in a while. You have been amazing sharing your journey over the past few years. It sounds like you are enjoying life as best you can and supported by your loving family and friends. Your attitude is so brave and inspiring. Go well Maureen, enjoy every minute and I hope you are comfortable. Your attitude is so brave and inspiring. God bless you.

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  3. Maureen, your blog has been such a support for friends that I shared it with. Love to you all you are amazing xx

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  4. Maureen thank you for sharing your experiences and thoughts throughout your treatment. It has been informative, interesting, funny and sad. Above all it has been personal and so you!

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  5. Thank you Maureen. As ever you write beautifully. Concise, insightful, inspiring. I’m proud to call you my friend. I have seen the opposite of a good death. I want the best for you xx

    Liked by 1 person

  6. Thank you for allowing us to share your journey over the past few years. You have helped more than you know. Wishing you peace and love.

    Liked by 1 person

  7. Thank you for sharing your experience, hope and strength with us. So glad you are able to spend time with loved ones and are able to be home. Sending you as much peace as your heart can hold today. God speed.

    Liked by 1 person

  8. I want to say that I am so sorry to read this. However, you have written such a positive blog on dying well, saying goodbye with dignity and giving permission to friends and family to have no guilt on where they choose to be when the time comes. Sorry seems the wrong word. So I want to send you my very best wishes on a life well lived. Keep enjoying those flowers and gifts. The biscuits look good!

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  9. Dear Maureen, I am so very sad to read how your cancer has progressed. I have followed your blog from the beginning (we were both diagnosed on 13/07/2015, I believe). Your blog has been so informative and straightforward. You are a very brave lady Maureen, how you have coped with the news that we all dread, that it has returned, has been awe inspiring. I love that you have gathered all your loved ones around you and enjoying your time with lots of fun and laughter. All my heartfelt love to you and your husband and boys, may peace fall on your home and the end of this journey will be serene and tranquil. Thank you Maureen and go well. Pam xx

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  10. So hard to read this Maureen, I can’t imagine how hard it was to write. These last stages seem to have progressed so quickly – amazing to think it was just a year ago when we had that lovely lunch with Sophie B. You have been – and continue to be – so brave through all of this. A real inspiration to us all, showing such strength and resilience no matter what has come your way. Sending lots of love to you and the family. I hope you make some special memories together in these next few weeks. Sophie x

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  11. Maureen, I’m so thankful for letting me feel your presence at this time. Knowing what’s on you mind brings me closer to you.

    Your writing is a great treasure. It is full of wisdom, honesty and courage and it teaches us how to live better.

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  12. Maureen, my shipmate and bunk pal. I’m so sorry to be reading this blog but equally it’s a beautiful post to see that you have been embracing every minute and are comfortable surrounded by your family. You’ve been the biggest inspiration and I’ve always been amazed by your bravery. But, that’s exactly what I saw on the boat so I wouldn’t have expected anything less. Sending all of my love and fond memories from St Lucia, and best wishes to Andy and the boys. They are all a credit to you. Caroline / Cazza xxx

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  13. Dear Maureen, I’ve followed your blog for a while now and you have been truly inspiring with a zest for life and fun!
    Im sad to hear your latest news but you still manage to inspire with your positive attitude to such a difficult situation,
    Sending you lots of love and thank you for being you! From Sally xx (who had breast cancer in 2016)

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  14. Dear Maureen. You are one remarkable lady. Your blog has always been informative, heartfelt and even humorous. Sharing your experience will have helped so many and even in your final days you have still managed to convey warmth. Rest peacefully my dear friend. I will miss you every day. Karen 🥰

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  15. Hi Maureen, a typical post from you – brave, honest, inspiring (these same words crop up time and again in the comments) – but the hardest to write and read. The comments here sum up how much you mean to so many people.
    You have shown the way in how to live with cancer and, eventually maybe, die with it. You are doing it on your own terms in your own space and that’s pretty much all we can all ask for in the end I guess.
    Hoping to see you in the next week; I’m en route, finally ✈️
    All love from all of us xxxx

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  16. Hi Maureen I am so sorry to hear that your cancer journey is nearing its end.  You are so very brave in how you have gone through it and are now facing your death in the same reasoned and courageous way. I wanted to thank you for everything you have written.  Your blogs have been so helpful and assuring to read.  The normality that you have sought throughout, in amongst the total abnormality of treatment and carrying the knowledge that the cancer is incurable, has reassured me that my own responses are not peculiar and has helped me strike a balance between accepting the inevitable whilst also being thankful and living as well as possible, whilst I can.   When I first found your blog, in the spring of 2020, I had just been diagnosed with secondary breast cancer with mets in my spine.  I had been treated in 2016 for the original BC and had had those years without the cancer being active/detected/impacting.  I was 49 when the secondaries were found and you were one of the first and few women around my age who were public about their experience.  I also studied in Glasgow in the 90s and lived in London for about 15 years, so there seemed a few parallels.  Although I just have one son and am not in a relationship and I swapped out cycling for swimming many years ago after falling off, a lot!  It was very easy to relate to you; your attitude and outlook have been very similar to my own.  To be able to read honest and informed journals of your treatment and life was invaluable to me, as I’m sure it will have been for many women.   I am still on first line treatment and the cancer is currently stable.  As we all do, I hope for longevity.  At least enough to get my son as close to adulthood as possible.  He is 14.  That is the hardest part for me.  In many ways though, the diagnosis has made me focus on living in the present and doing as much with him as I can, while I can. These past two years have been contradictorily, the toughest and also the best we have had.  I am hopeful for another few like this but am prepared if it turns out less. I’m sure you will have many messages to read and I hope that isn’t too exhausting for you and that it lets you see the fantastic impact that you have had on others, including me.  I hope that you can celebrate your life with your family and friends in these next few weeks and that all your flowers are brought.  I hope that when my death comes I can face it with similar dignity, courage and openness. Thank you so much for sharing your thoughts and journey.   Huge love to you and your family. Janetxxx

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  17. You always were an extraordinary person Maureen, probably the wisest of us all and your words are an inspiration to us all. I have so many happy memories with you and Micheal and I wish you both peace and tranquility. Lots of love, your friend Brian xxxx

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  18. I will miss you, Maureen. You know how much I love you. I have always appreciated your sincerity, your generosity, your compassion, your thoughtfulness, your human-kindness and your laughter. Go peacefully and may you feel the love of so many of us who carry you in our hearts 💕

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  19. Maureen, my wonderful big sister.
    You truly are amazing. Throughout your life’s journey you really have shown us all “how to live a life well(unbelievably well)” and are now showing us “how to die well”. You helped save my life, and were there for me at my lowest point, there are not enough words or pages long enough for me to let you know how fortunate, grateful, thankful and proud I am to have you as my sister. Time is the most precious thing that we have, and you gave so much of that priceless precious gift to me. Many flowers have been previously sent, no more are coming from me in Glasgow as I don’t want to get sent to the naughty step, just sending you virtual ones. Your blog has helped me immensely and through reading them all, I feel closer to you and admire you more, if that is at all possible. You are a gift that keeps giving. You are extraordinary, inspirational, and thank you for being you and for being my sister
    I love you x
    Your wee brother Stephen 🌻❤️♠️♦️♣️🌻

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  20. Maureen, thank you for the friendship and love you have given me all these years. I always felt that even if months went by without seeing or writing to each other, when we met again, it was as if we had seen each other the day before… and you always had so many interesting things to share and tell! Thank you for all the moments we have spent together in trips, walks, conversations and letters. I keep them all in my heart.
    I love you, Maureen, and that’s why it’s so hard for me to let you go.

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  21. I’ve followed your blog for a while now and I’m sad to see your latest post. Although I don’t know you, it’s clear from your blog and from the comments, how good you are at friendship and living in general – a rare and deeply admirable thing. I wish you a peaceful time in the place you want to be, surrounded by the love of family and friends, whether they are physically present or not. Your life is clearly a gift to so many.
    Jane

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  22. Hi Maureen.
    ‘Inspiration’ is a totally overused word these days when it’s bandied around about television personalities and random nobodies and so many ways, and its value and true meaning seem to have been diminished. But to read your latest blog gives it new and real life, and it’s a word which truly applies to you in the way you have tackled the last few years, and the present day head with such courage and bloody-mindedness!
    I know it’s a while since I last saw you, when we met for a coffee and Euston when I was down with my dad and Pauline, but she has kept me up to date with your situation all the way through your illness, and to see the way you have tackled your situation – confronting it, challenging it and finally embracing it in the most practical way – has been heroic. I know you kept up your sport and exercise regime for as long as you could, and the number of miles you were cycling until relatively recently is more than most ‘healthy’ people could even begin to contemplate without needing a seat and a stiff drink.
    The details of your situation, and the manner in which you’ve chosen to deal with it have been a total reality check, and have put so many of the trivial annoyances, frustrations and first world problems I face every day into perspective, and it’s honestly pathetic how banal they seem in comparison, yet I let myself be consumed by them. Get real, McHugh!
    Although, it’s difficult to say it, in the spirit of your practicality and blunt honesty, I know I’ll never see you again Maureen, and I’m sitting here reminding myself of all the laughs and nonsense we all shared when you were round at ours, or down at The Eagle Lodge, or via my friendship with Michael… and it was a joy and a privilege to have known you. I hope can ‘enjoy’ your last days and weeks here. It sounds like you have found some peace in where you are at the moment, which must bring some comfort to you and those closest to you, and I hope you’re able to make the most of your remaining precious time with them. Thinking of you. Bye, Maureen.
    Alan xxx

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  23. Hola Maureen!

    You most probably will never get to read this, however I wanted to write it anyway. Maybe someone might read it out to you.

    I know we said our physical goodbyes a few weeks ago in the hospital and it was lovely face timing you from Vancouver on your birthday and seeing you so happy.

    I also know you know that I love you, however it is only over these last few weeks that I have realised how deep that love is, and will always remain, for you.

    I’m sorry I never got to bring you flowers one last time.

    Adios,

    Your one and only big brother.

    Michael

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  24. My dearest Maureen. 54years we have been friends, special friends. Growing up I felt like the sister you never had. In fact you had 2 plastic sisters, Carole aswell. It was wonderful growing up with the Kenny’s and in a way the Kenny brothers were brothers that Carole and I never had too. We could not have asked for a better friendship. Even though, as we grew up and created our own family life and time could pass and we didnt speak or see each other, but when we did speak, or meet up, the conversation flowed. I miss you Maureen but take comfort you are able to say goodbye, I know you are at peace. You will be joining my beloved Alan and that brings me comfort. Rest easy my friend. We will meet again. My memories and love for you and your family will go on. My dearest Maureen ♥️

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