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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Wednesday 7 March 2012

Rough Justice In This Cruel Cruel World....!

Hi cyber friends and followers,

It's James here Carole's son, firstly apologies for the radio silence people it's been a bit hectic to say the least. You may be able to guess from the title this post is not a positive one. 

Mum has asked me to take over her blog from now on as she no longer has the strength to carry on blogging at the moment, it's been a tough few weeks in particular since mum came out of hospital. 

Literally as soon as she got home I think we all thought it wouldn't be too long before she needed some more time with some medical assistance, it was lovely to get her home and see her relax slightly but it was short lived as the problems started again once she had settled in, she couldn't carry on with the constant sickness and diarrhoea. 

It resulted in her being admitted to hospital again......crap.! Told her other Kidney is no longer functioning properly......double crap! A drain has to be inserted via mum's nose into her stomach..... now your having a laugh tripple crap! So back on a drip to rehydrate her again, anti sickness injections and the list goes on and on.  Surgery was discussed as an option but needed to consider it would be very high risk because of the low blood pressure and high heart rate, truthfully this was not an option we needed to even think about, why put mum and ourselves though this stress to really resolve nothing........ it's not going to change the final outcome and may be looking at a few extra weeks, on the other hand she may not make it through the op! 

She is totally exhausted both mentally and physically, we have discussed between us as a family that mum has reached her limit, we always new there would be a cut off point and I think she actually passed it a while ago. It was never about "get as much time as we can" it was always "lets get some time whilst you have a quality of life", admittedly from a selfish point of view you sometimes find yourself thinking "I want mum here no matter what" those are sad moments when you are down because with a clear head I really don't want to see her suffering and wouldn't want to see her suffering for an extended period.

Having spent some time in the hospital and moved onto a general ward (6 beds)  mum was deteriorating rapidly and just felt defeated, being exhausted and on a general ward is a nightmare, full of weird and wonderful characters and just not the place she needed to be. Palliative care have again been brilliant and had chats to offer there thoughts, basically "It your time now". 

Mum has made her decision with the full backing off all the family to go to Trinity Hospice, luckily a bed became available on Tuesday morning and she was admitted. having visted her yesterday it was a releif to see her in there, so much calmer and peaceful, a place for genuine rest and care, all the staff seem very friendly and caring with a few staff members coming into introduce themselves and just a general chat. 

mum is still very weak but she is happy to be there, well not happy because she doesn't deserve this at all but guess you know what i mean. there has been some very hard moments with us all crying but the key thing i keep telling mum is "You have nothing to prove, your decisions need to made for YOU  now as a lot of previous decisions have been made for us, trying treatments and surgery she didn't really want to do". 

I was dreading having the chat with Dj to tell him things are changing, more importantly how quickly things are changing, how do you tell a 12 year old boy that his mum will not be coming home and is now moving into the hospice! Rab filled him in briefly and corrected his thinking that you don't go the hospice to get better and you go there to be peaceful for the end of your journey, I had a long talk with Dj as always promised that as soon as we knew things were changing we would let him know. honesty has also been the best option for Dj, this is not something we could protect or hide from him and he has a right to prepare himself for the difficult times ahead. We talked about all sorts of things including how amazing "Daddy" (Rab) has been over the last two years, he has been a mountain of strengh, he doesn't like to talk about his feeling too much but has got better over the last few months. Just want you to know Rab the whole family thinks you are amazing and we love you loads and loads.  

2 Years worth of treatment has made us all have buckets full of tears, millions of screaming moments with anger, mood swings, selfish thoughts, moments of faith but mainly doubt, feelings of helplessness....... 

and after all this....................... not one clear scan or a period of time that mum could relax and not think about this b*stard Cancer or as we now have to say Cancers! It seems like not only has mum had bowel cancer she now gets ovarian to top it off!

A CRUEL CRUEL WORLD.....! 

Keep the comments coming as I'll be printing these of and taking them to mum in Trinity as a pick me up, you have all been a great help during mum's journey and I know she has made some real friends blogging, I know lots of people have found her posted helpful too. 

If you have found her blogg useful or interesting maybe you would consider donating a pound or two for Trinty Hospice, it takes £8,000,000 a year to keep them running and only a third is received from government funding, meaning they needs to raise approx £5,000,000 in private donations.  
          

40 comments:

  1. Dear James
    Thank you so much for your update on your precious and lovely Mum. I have been checking in to see how she is.
    I really feel so much for you all. This $$^%%% disease is evil. It has been a part of my life for over 27 years :/
    I have only commented a few times on your Mums blog and each time she has taken the time to answer despite the fact she must have been feeling so unwell. What a lovely lady.
    It makes me so angry that this disease affects such beautiful people.
    I have read alot of your Mums blog as it is so helpful, ive lost all my family to cancer apart from my son. Both my mum and Dad had bowel cancer, and my sister had 3 primary cancers aswell as a brain tumour so I can totally understand how it feels that Mum has been diagnosed with ovarian cancer aswell. How can life be that cruel :(
    I think im rambling abit James I just wanted to send my love to you all. All through your Mums blog her love for you and DJ and Rab and your wife...and all her family shines through her words. And as a mum I speak from my heart to you, You have done absolutely everything you could do for your mum, and your love and support have been her strength and courage.
    I am so very sad for you all tonight but I also know that as a family you will cope with all of this, as hard as it is, because you have eachother and because you are a part of your mum, and her strength is inside of you x

    Carole I send you my love and I have a much deeper understanding of what my family went through because of you and your honesty in your words. You have helped many people and more importantly you have given this world two special young men that make it a better place to be in.
    ((((((gentle hugs))))))
    Love sally xx

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  2. I see your mother's forthrightness shining through you. Your mother is a remarkably brave woman, and she never flinched from the truth, no matter how difficult. I am glad for her words on this blog. No matter what, you will know where to come to hear your mother's voice once again. My prayers and love to all of you.

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  3. Thank you James for taking over your mom's blog. She has been such a trooper through all of this! What is even more amazing is how she reached out to so many others and helped them through their own rocky stages while all the time she was fighting her own tough battles. She has been a dear friend and inspiration to many. I'm so glad she has such an amazing family to be with her at this time. Thanks for sharing her with all of us. As always... you are all in our thoughts and prayers.
    Carla

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  4. Thank you for updating, I have felt that things were changing for a while now. Please give your mum my love and a big hug. She has been so strong and courageous, a real inspiration really to everyone who has had to deal with this horrid disease. I am pleased to know she is comfortable and surrounded by those she loves and who love her.
    I also follow Carole on Face book and pop in to say hello when I can.
    Thank you again James, and I am so sorry for all your mum and her family are going through.
    Much love and always in my thoughts....xo

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  5. Carole, I never thought you'd get there first but as you are you can put the kettle on for when I join you and we'll have a cup of 'Good Heaven' tea...Til then take it easy my friend and enjoy learning to fly! (From caterpillar Gabi)

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  6. So very sad to read this post James. Yes it's a cruel cruel world where nobody deserves to suffer like your mum has. I know you'll be showing these comments to mum so Carole, you're a bloody legend! You have helped so many people in so many ways by sharing your experience. You have put everyone else before yourself for so long, now I echo James words and say this is your time to complete your journey as you wish. I'm pleased that you are now being cared for in a calmer place. Carole I feel honoured to know you. Much love Nicky xxx

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  7. James, when my Mum was dying I stumbled upon your Mum’s blog and your updates from when she was in hospital. Your Mum’s beautiful and searingly honest words have meant so much to me as I tried to understand how my mum felt as she couldn’t express how she felt from the moment she was diagnosed. Not a day has gone by since this time that I have not thought of you all. Please tell your Mum how much she has meant to me and helped me just through her words, and thank her from the bottom of my heart. You and I are the same age, James, and I have a couple of times tried to comfort your Mum that even though my Mum has gone, she really does live on in everything we do and say, and this is really comforting. I know just how very painful this time is and if you ever need anything, I am here. I like you have had so much family and friends support, but sometimes people who are going through it too understand in a way like no other. Much love to you all and a gentle hug for your Mum, Alice xxxx

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  8. This post breaks a piece of my heart, but also gives me peace knowing that your Mom must be so proud of how you have written about all that is going on.


    All I can truly say - is - I will keep your family in my thoughts, and heart. May your Mom find all the comfort, love and peace she needs at hospice.

    As a daughter with a Dad who has battled stupid colon-cancer, I know this must be so incredibly hard for you to keep us updated - but THANK-YOU.

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  9. Send her my thoughts I just stumbled across her illness while reading up on information for my father in-law who has bowel cancer. The saving grace is that the pain and suffering will end the misery does not go on forever, it's a crazy thing this life we all experience and I'm not sure what it's all for, I am like you in my religious beliefs but find it very difficult to believe life has no purpose, one thing I will leave you with, remember all the fun you have had before you fell ill, was it worth it, (yes) would you do it again? (yes)and my guess is you are destined for a lovely place and you will see your children smile again, hope you are pain free Carole, Love and thoughts Richard.

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  10. Thank you for letting us know how your mom is doing. She has been so inspirational to me. I'm newly diagnosed but it helps tremendously to see that someone can face the very worst that cancer can bring with grace and generosity and such caring towards others. My heart goes out to you all.
    lrs

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  11. My heart goes out to you all, James. Thank you so much for taking the time to update us. Your mum has been an inspiration and great help to me during my journey too. I am holding her hand, virtually, as she takes her final steps.

    Much love to you all, especially Carole.

    Katherine xxxx

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  12. Oh James . . . so very difficult now. Well, none of it's been easy, but these next days, weeks and months will be some of the hardest. I think you know how much I love your mum (and you and the rest of the family) and, like all of you, can't imagine life without her. Your mum is an amazing woman and it's been an absolute priviledge and an honour to be able to call her my friend.

    I really hope Rabah recognises just how much Carole loves him and how much his help and support has meant to her these past couple of years, and how much his strength has helped her through some of her darkest times.

    I hope, too, that you and Dj will keep hold of the good times. Your mother has always been so immensely proud of both of you.

    If I can get to see her in the next couple of days, I will but in the meantime kiss her for me and tell her I love her.

    xx

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  13. My thoughts and love go to you Carole, James and family, please tell Carole i am thinking of her and send my love and good vibes to your all, lots of love lizzy (sharons daughter) xxxxxxxxx

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  14. A message for all of you...
    Carole, James, DJ, Rab and Sarah.
    I am thinking of all of you and wishing you strength and the ability to get through this. I can't imagine how hard this is for you. Carole....I wish you a calm and pain free stay at the Hospice. I am always thinking of you. I am gutted! Bastard cancer! Love and hugs tp you all.
    Carol x

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  15. Dear carole I started reading your blog 2 years ago I have been so amazed by your strength and courage. I love the way u write its funny and very honest im sure it helps lots of people with there own struggles cancer or not. I really hope u get better I know its not your time yet.xxXXxx

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  16. Dear Carole,

    Karen contacted me yesterday and gave me a link to your blog. And I've been reading it ever since. I don't know what to say and if I don't send this quickly it will go the same way as my emails-saved as draft and never sent lest I say the wrong thing. I'm very sorry that I didn't get to know you better and when I think about the times we met it seems like only yesterday. We are thinking of you all-Thomas and Kirstin still fondly remember Dj-they also play minecraft, especially Thomas. You always said what an incredibly good son James is and this really shines through his words. I hear so many people moaning about their sons but you truly have two of the best ever. You are right to be proud of them-if only everyone could bring their children up equally well what a great country this would be! And it certainly sounds like you also have a wonderful husband. You are an amazing woman and whilst I don't 'do' praying as such, I am willing you a drop of extra stength with every keystroke-I'm rambling now so I hope that's a good deal of extra strength that gets through......with lots of love and wishes, Rina, Thomas and Kirstin XXX

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  17. James,
    Its so good to hear from you. You've inherited your mum's talent for writing, and I know all Carole's blog followers will be grateful for you taking the time to post an update. You've written beautifully and honestly.

    I keep thinking back to that day in January when we all met up. It felt so right us all being there, and I felt like I already knew you all - probably thanks to your mum bringing you all to 'life' with her writing over the last couple of years. You are all exactly as I'd imagined - a kind, loving, strong family.

    When I came away that day, I felt so glad that your mum was surrounded by so much love.

    I only wish that I could have met your mum under different circumstances. Her friendship over such a short period of time has meant so much to me. She knows this, but I'd like you to tell her again...and again :-)

    James, I know that you must be so proud of your mum - and I know she's incredibly proud of you.

    Please send my love to all. And tell Dj that Tom is thinking of him.

    Stay strong,

    much love, Lisa xxxx

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  18. Dear Carol, Rab, James, DJ and all your wonderful family.

    My thoughts love and best wishes are with you at this time. Carol you have been, and will forever continue to be, a real shining star. Your family are a real credit to you and the love and support that shines around you have been a joy to behold. I thank you from the bottom of my heart for the words of support you once gave me and say goodbye with all my love.

    For your family when the time comes they will miss you and think of you every day but in all of the difficult and sad time ahead, they will be sustained by the courage you have shown, and that you have made a part of all of them x

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  19. Dear Carole,
    I started reading your blog a year ago, and it never stopped to amaze me how corageous and graceful you have been throughout this b@stard disease... You have fought so hard, and it's so unfair for it to go this way. I know you'll continue to be just as amazing through the rest of your journey.Rest assured that you have been an inspiration to so many people.

    And to your family, I send them all the strength and peace I can.

    Andrea

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  20. Hi James Your Mum must be very proud of you and DJ you sound like wonderful sons and Rab a wonderful husband and father , I know how much you all mean to Carole. Please pass on my love and prayers to Carole. You are all always in my thoughts and I pray for a peaceful final journey for Carole and strength for you all at this awful time. All my love Stef ( mum123)

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  21. Hi James - I came upon your mum's blog only a couple of weeks ago through an old school friend of mine who also has advanced bowel cancer. I sent her a couple of messages telling her how amazing I found her and she answered me with such honesty and wisdom.
    I had cancer myself some years ago and found if terrifying; I never reached the point of acceptance that, from reading, her blogs it was clear she had reached. That kind of acceptance requires great courage and maturity - which your mum so obviously has.
    Please tell her that from all the messages on here she has so clearly helped many people, which is a great achievement. Let her carry that with her to wherever she goes next.

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  22. James, your mum has always impressed me with her strength and her determination and the fight she has put up to get this far is incredible. She once said to me that she hated talking about putting up a fight as if losing it, meant she hadn't tried hard enough or had just given up. Carole - Nobody could accuse you of that. Some things just cannot be overcome no matter how much you try. Know that you and Rab and the boys and the rest of the family are in our thoughts
    Tracy xxx

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  23. Thank you so much for updating the blog James, I am sending so many thoughts and wishes to you all, Carole is one of the most inspirational women I have ever known, words don't seem enough right now but I hope you all can take comfort in everyones wishes, her love amazing love for you all will keep you going in the darkest times xxx

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  24. James, as you know your mum is a true inspiration. I have been reading her path and found her blog via a dear mutual friend. I wish you, your Mum, and family good thoughts, bright days and restful times. I hope the hospice continues to be a source of comfort for her now. Love from my husband and I. (Wendy - Australia)

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  25. James your mum is an amazing woman.she helped my through my own battle with cancer and I'll never forget that and will always be grateful to her.my thought are with you all.much love Donna and family xxxxxxxx

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  26. I only found this blog after visiting the cancer research site after my Husband was diagnosed with rectal cancer. I'm so very sorry to hear the news about Carol. I've found her blog inspirational and the information I've discovered from it has helped me on my own journey as care-giver whilst my poor soul mate battles on.
    I lost my own Dad to cancer and experienced the feelings of relief mixed with sorrow as he went in, unwillingly to a hospice.
    May the times ahead be gentle on you all.

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  27. Hi James, I have come across this blog tonight and just want to say thank you to you and your mum for sharing in this inspirational blog. Your strength is amazing. Love and thoughts are with you and the rest of your family at this time xx
    Sue- Somerset

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  28. Thank you James...I will be in prayer for your mom and your family...I appreciate you continuing to share your mom's life during this time...

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  29. I am from "cancer caught me" blog and from colonclub.com. Please let your rmom know that I have read her blog from the beginning and so so appreciate her sharing her story it has been so helpful even though sad at times, especially now. And thank her for the kind comments she has left on my blog making me feel better and cared for and understood. I will keep her and her family in my thoughts. I wish her nothing but peace.

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  30. Carole,
    Hey there, kindred rectal cancer warrior. I am so sorry that battle has taken this turn, but take solace in knowing that you're in a peaceful, comfortable environment. I'm hoping you get all of the quality time you can with your loved ones. Cancer may take your body, but it can't take your spirit, and I feel fortunate to have had the chance to come across yours. The spirit you've shown while battling cancer has been inspirational.

    Thank you for all your supportive comments on my blog when I was going through my own treatment. They always brightened my day a bit. You and your family are in my thoughts.

    (Doug - Portland, Oregon)

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  31. I have stayed in touch with your mom for a long time. I too have battled cancer. I live in the USA and have followed her blog for quite some time. I wish peace for you and Carole.
    Aaron

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  32. Thank you so much James for updating your mums blog, you are doing a grand job, you have been so strong and such a big support for your mum and DJ also Rab and we know that she is so proud to have two wonderful sons in Djamel and you and loves you so much as we do also.
    We would also like to thank all of Carole`s friends that she has made through her blog, i know that your support and love and encouragement through this horrid journey has been a big comfort to her.
    Carole has put up such a strong fight against this bastard cancer, but unfortunately you cant win all the fights, and she doesnt have any fight left in her.
    You have dont enough my darling you just need to rest now,love you so much darling , Mum and Dad xxxxxxxxxxx

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  33. thinking of Carole,safe journey,thank you for all your wise words of comfort x

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  34. You are so brave. I am sure your mum must be very proud of you all.... Our thoughts and prayers are with you all in this final part of your journey....x

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  35. Dear Carole
    I have been reading your blog for over a year. Thank you for your amazing love, spirit and strength. Your sharing of your journey is such a support to so many.
    Sending much love and biggest hugs from California to you and your wonderful husband and sons.
    Joanne

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  36. Dearest James, Dj, Rab and family, I have just come across Caroles blog this very evening. What a bastard this disease is. So heartening to read and see how many wonderful people admire Carole and her beautiful family. Indeed dear Carole, just rest now lovely lady. God knows you have worked hard enough for it.
    With all my love and thoughts from Australia
    Rose

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  37. Dear James,

    Even though it is very hard for you to post here, you are a very brave person just like your lovely mother. Your mother is a wonderful lady.! She is the first one who wrote to my thread about my mother. She was so caring, so nice.. I have been thinking about Carole every day and praying that she will have a peaceful journey. It breaks my heart to say goodbye to her so soon but life is so cruel as you said. Please tell her that my mother is doing better now. And I thank her so Much for the support she gave me. Please give my love to her. My heart goes out to you and to your family. I am sending sun shine to Carole and your family from Istanbul, Turkey. May God be with you all.! Soley xxxx

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  38. Dear James, still thinking of you all especially your lovely mum Carole. I am hoping she is comfortable and relaxed so she can sleep and rest and know that you are all there right beside her.
    You are truely an amazing family and your mum has helped so many people, she is a shining light to anyone out here who is feeling lost and alone.
    Gentle hugs to you all
    Much love sally xx

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  39. Hi James. Was finally well enough so I went to see your mum yesterday. Can't say I was particularly looking forward to it - found myself dawdling along The Pavement rather than walking with any kind of purpose! - to be honest, part of me was dreading what I might find, but I was worrying for nothing.

    Obviously, she's worn out and has very little strength left, but she seemed so very calm and peaceful. I stayed with her for about three quarters of an hour - mostly we just sat in silence, or held hands. (although I will confess to having subjected her to a bit of a kiss fest when I was leaving, but that was just to pay her back for the "Oh my God!" when I walked in!!)

    Trinity is an absolutely wonderful place and absolutely right for your mum now. She clearly feels able to rest and be peaceful there, and it must be a huge relief to all of you to be able to go and see her in such lovely surroundings and not a General Medical NHS Ward!

    Hoping that I can get back up again early next week, but in the meantime I'll be thinking of all of you, and especially your mum.

    Love, Louise xxxxxxxxx

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