I’m a ‘Stable Mabel’….

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I’ll cut to the chase as it’s been weeks since I posted and obviously things weren’t great when I last updated you all.

As many of you know through Facebook, text, or email the bone scan and CT scan results I got two weeks ago were as good as they possibly could be and I have joined the ‘Stable Mabel’ club – the moniker we proudly proclaim on the Secondary Breast Cancer online forum I’m a member of when nothing changes.

For anyone living with Secondary Breast Cancer (SBC) remaining stable is as good as it gets. That’s all we want (and if by some miracle there is a drug that improves things, even a tiny bit, for any one of us, we all celebrate – wildly). But we know that we are not going to be cured. I am not going to beat cancer. I am going to be living with it until it kills me (that, or I get run over by a bus!)

So for me to be a Stable Mabel really is as good as it gets – and I can’t tell you how happy that makes me J

Going forward my treatment remains the same. Three more rounds of the wonder drug Kadcyla (a combination of Herceptin and chemo) – once every three weeks, plus my bone strengthening injection (Denosumab) every four weeks, and then another set of scans.

Before each injection and infusion I have a blood test the day before to check various things – my liver function because the Denosumab can damage the liver, my white count in case it’s too low to have the Kadcyla, and then there’s the echo of my heart every 12 weeks because the Kadcyla can damage my heart, and a dental check every 12 weeks because the Denosumab can cause my jawbone to disintegrate and teeth to fall out. Throw in other appointments – oncology consultant and then the scans after every three cycles of Kadcyla and I’m at the hospital most weeks at least once. But I am not complaining. I have the most amazing team looking after me and for that I am immensely grateful.

I can’t pretend the last month has been easy by any stretch of the imagination. In fact I think it’s been the hardest since this whole journey began in November 2014.

Four weeks ago today I lost someone who had become an incredibly close friend over the 16 months I had known her. We met when I joined the local breast cancer support group and from the first moment I was in awe of Julie’s courage and beauty (inside and out). She had already been through some much but in November last year Julie was also diagnosed with SBC and we became a lifeline for each other – crying, laughing and often just ranting at the unfairness of it all. We got each other through the toughest of times and all I wanted for her was to have as much time as possible with her lovely husband and three wonderful children (4, 9 and 11).

Julie had such plans for the summer holidays, for forthcoming birthdays, and for Christmas, knowing after her latest scans and diagnosis in February that these would probably be her last. She was doing well, on an oral chemo, but kept getting dreadful headaches which nothing could touch. Nothing showed up on brain scans (the greatest fear for anyone with SBC) but Julie collapsed, was put on life support and died suddenly. I am so glad I got to see her in intensive care the night before because, quite honestly, if I hadn’t I don’t think I would have believed it and would have found it even harder to cope than I have. We went from bantering on text about when she was escaping from hospital on the Thursday, to her being on life support on the Saturday.

I am so sad and angry that my lovely friend didn’t get to do all the things she had planned – and also didn’t get the time to leave everything as she wanted for her hubby and children.

She gave me a cushion the last time I saw her which says “When it rains look for rainbows and when it’s dark look for stars.” I will and I’ll know she’s watching over us all and that she’s one of those shining stars. I’ll treasure our friendship forever and try to be as positive as Julie always was.

Julie’s death, the side effects of my treatment (mainly chronic tiredness and fluey symptoms), and one of my occasional spells of depression have made this last few weeks incredibly hard, both for me and my amazing husband who is, as always, an absolute bl**dy saint.

I gather my energy, plaster on a smile (and a bucketful of make-up) and get on with things but he is the one that lives with the reality of the situation. Of me in pieces when I get home (or even just into the car and we’re alone) when the mask slips and I dissolve into a weeping wreck. I tell him often how much I love him but am just putting it out here too. This is not just my fight, it is his too and I couldn’t hope to have anyone better or stronger in my corner.

As time goes on I realise that my life now is going to be punctuated by love and loss. Not only have I lost Julie but two other members of the local support group who also had SBC have also died over the last four months. There were four of us and now there is just me. Three ladies from the online forum have also died in the same period.

My new diagnosis has also meant changes to how we plan our lives. Anyone who knows us knows we would have holidays planned and booked years in advance (mainly to get accessible accommodation). We did have great plans for an amazing holiday to Australia at the end of this year but we have had to cancel that, losing money in the process, because I am no longer allowed to fly long haul. It’s just short flights for me from now on – a maximum of four hours – because of the progression in my lung. Long haul means higher altitude and increased cabin pressure which puts me at more risk of lung problems and DVT.

I also need to stop buying tickets for things because I have learned that I am often not well enough to go to things (I’ll watch on the telly instead!) and, because of the three monthly scan cycle, we have to work any potential holidays into that as my oncologist wants me to have had a stable set of scans and three cycles of Kadcyla before any foreign travel. Lastminute.com is going to be coming into its own!

I was so fed up of a diary with so many things crossed out (including Australia) that I have bought a new 18-month academic one and am only writing in things for the coming 3 months in pen. Everything else goes in pencil until nearer the date and if we can’t do it, it gets rubbed out, rather than remaining with lines through as a permanent reminder of something we’ve had to give up!

Apologies for this being a bit of a ‘down’ post – thank your lucky stars I didn’t try writing anything two weeks ago! I’m as well as I can be, it’s been a struggle over the last few weeks, but I’m thinking positive and focussing on the future (well the next three months at least!)

Thanks as always for your amazing comments and messages and apologies to those of you who have been in touch and who have haven’t replied to yet. It’s been tough but I’m getting there and will be respond.

How I feel pretty much all of the time!

How I feel pretty much all of the time!

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16 thoughts on “I’m a ‘Stable Mabel’….

  1. karen

    My very dear friend fiona iam so sorry for your loss of your friends but to have you in there’s life’s would have been lovely to know you, your a very brave person and you will fight this horrible cancer I hate the word so much but with all treatments maybe one day we won’t need to use that horrible word, keep strong fi and lovely ray love you both very much xx

  2. Lindsay

    Your blog makes me cry but it is also a privildgeto read someone so articulate who is going through so much. I am today fit and healthy but we all know its a lottery and what you are living is reality for a lot of people around us.

  3. Mags

    Fi, thank you for putting all your thoughts an emotions into words and sharing with your friends. It’s brave to write this and I’m so sorry for the loss of your friends. You have so many people on your side but the equally brave some you’ve met Ali g the winding road of battling this have an understanding that I guess others of us just don’t. Nonetheless we’re with you every step of the way – in admiration, love and support. Your tribute to Ray is inspiring too. You guys are a dynamic duo!! So much love to you both. Xx

  4. Mags

    Drat! Clumsy fingers and predictive text Garbled my comment and brought Ali g into it! That should read ‘brave women along’ sorry!,! Xx

  5. Rachel Baddeley

    Oh Fi, I’m afraid I’m nowhere near as good with words as you are but having read your latest blog I just had to tell you how brave and inspiring YOU are! To be facing such adversity with such honesty and bravery is truly remarkable. It must be so hard to have lost such a dear friend and such a shock, I’m just so pleased you have the rather lovely Ray with you every step of the way. Sending you all our love & strength….keep fighting Fi! Much love, all us Baddeleys xx

  6. Karen

    Hi Fiona I’m so sorry to hear that the last few weeks have been such a nightmare, and sorry to hear that you have lost some dear friends. Your updates are an inspiration to us all – and I’m sure you were a huge help to your friends. I’ll message you about a catch up soon, Much love Karen xx

  7. Glad you are a Stable Mabel…I am on a similar trajectory to you and so am walking with you, and remaining upbeat! (or as upbeat as possible, for as much of the time as possible!)

    • Jan b

      Hi Wendoxford
      Hope you’ll forgive my intrusion, I assume you are in the Oxford Area. Wondered if you know there is a BC Support group in Oxford, http://www.bosomfriends.org.uk, which I help to run and also one specifically for people on your path, run by Breast Cancer Care. If you’d like details, do get in touch. Good Luck with your journey xx

  8. Marie

    So brave of you to share your words with us Fi. You are dealing with so much and yet still make time to share your journey. It makes me so sad to hear what you are going through, life is just so unfair, but the way you are dealing and coping with it is an inspiration to us all. You really are amazing. Keep strong and enjoying every minute that you can. With your super organising skills I bet you cram a lot in over any 3 month period! Sending love and hugs to you both xxx

  9. Jan b

    Hi Fiona
    Thank you for sharing your thoughts, it is a blessing that you can articulate so well. We share your sorrow at circumstances, and admire your strength and courage. You and Ray have such a special relationship, giving one another strength to take each day at a time.
    I know you do live each day as fully as you can, and long may it be!!!
    A huge hug and love Jan bx

  10. Hello Lovely Lady Xx
    Sorry to hear about Julie she sounds like a wonderful lady x
    Keep smiling laughing & fighting we are all beside you in this fight x
    I have 2 boys here who say when you want a hug let them know & we will get in the car & come up to see you & will bring the freewheel cos Boo wants to give Ray a go lol
    Take care love to you both
    Gary Boo & Oz
    Xxxxx

  11. Manda

    Dearest Fiona, may your inner strength always pull you through….even if that means dragging you kicking and screaming sometimes! If you feel angry sometimes, that means there is a fire in your belly….and where there is fire, there is life! Channelling all the different emotions you experience into positivity must be no mean feat in itself but keep doing what you’re doing because your honesty and positivity is an inspiration…… Eat cake and drink Champagne, especially if salad and lemonade was the original plan!

    Always in our thoughts…love and best wishes..Julia and Amanda xxx

  12. Wendy

    Fiona
    Life throws us many obsticles in our way, some are small but others are huge! Your friendship with so many people maybe a small thing to you but to them it is huge. Ray is a huge support to you and he has not taken to it lightly, he knew the risks of the cancer may have on you and he knew he loved you no matter what.
    Your friend Julie may not be you in body but she is looking down on you and willing you to keep fighting, as we all do!
    Enjoy the 3 months planning at a time, you always find that extra special place for you and Ray to go to.
    Be strong my friend, even though we have never met, hopefully one day we will????
    Enjoy life to the full as much as you can and just know that a lot of people out there consider you as a HUGE part of their life
    Take care
    Lots of Love to you and Ray
    xxxxxxxxxxxxxxxxxxxxxxxxx

  13. Becci

    Dear Fi

    I’m so sad to read your latest update but am greatly cheered that in spite of your loss, your hectic treatment schedule and your ailments you continue to be a tower of strength to many and an inspiration to us all (not to mention a wonderful friend who manages to get a birthday card in the post to me on time – I marvel at that!)

    You’re a wonderful woman. I’m so fortunate to have you as a friend. I’ve been thinking of you so much over the last few weeks. Now I know why.

    Keep fighting, smiling, loving and laughing. Hope to see you very soon xxx

  14. Janice

    Dear Fiona, I can’t really find the right words but wanted to leave a comment to say that you are in my thoughts and I wish you all the rainbows and stars that you need xxx

  15. Jane

    Dear Fiona, what a tough time you have had, and are having. Sending you hugs and fingers crossed that you will be well enough for us to meet up when Jayne comes south next month xx

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