TRIAL AND ERROR

I’ve had a lot of messages the last week asking about the results of my scan on the 6thJuly. It was very much a make or break moment as to whether or not I could continue on my clinical trial of immunotherapy and targeted drug. And before we get into the knitty-gritty of my current situation I’d like to thank each and everyone one of you – friends and strangers alike for your good wishes. I’d also like to apologise for not being able to keep up and reply anymore to all the wonderful messages I’ve received from you. I read them all but if I tried to reply to all I would be spending my last days glued to this laptop.  If the power of positive collective thinking could have helped me – I would be in A1 grade health right now, cancer free and flying.

MORE BAD RESULTS

Sadly, as the more perceptive of you will have picked up from my social media posts the last few days, that is not the case. I headed into the Christie for my CT-Scan results last Wednesday full of trepidation. On clinical trials you generally live or die (excuse the pun) by how the results inform the doctors. I knew there hadn’t been masses of improvement in my cancer and the previous week I’d had to have more than 2 litres of fluid drained off my lung due to a pleural effusion. My skin metastasis have been incredibly painful, imagine hundreds of hot little needles threaded under your chest and every so often some cruel fashionista makes another stitch. So I knew I wouldn’t hear my tumours had shrunk but up to a 20% progression and I could stay on the trial and that was all I wanted really. The way immunotherapy works, your immune system can take a while to really get up to speed to I had seen charts online with anything from 3-9 months for initial response.

My first clue all was not well was when I sat down for my regular pre-appointment bloods with the nurse. I immediately clocked she only had 4 vials to fill. There are normally about 10 and different plastic bags to separate them off for phlebotomy and immunology to have a look at. One always needs to go straight on ice. There was no ice, no immunology bag and the nurse said she’d just check we didn’t need more bloods for the trial and came back from the office proclaiming cheerily – ‘no none needed today’. I asked if I was having an ECG, and she told me no, it wasn’t written on her sheet. But I knew from the trial schedule if things were on track then I should have been. Double red flag. Every time I’m in and having my observations done, I have to take a little walk around the corridors to see if my oxygen sats go up after a little exercise. As I passed the waiting room and saw Steve down the corridor I shook my head at him, he could see from my expression, things were not going to go well.

THE GREEN MILE

Then I got put in the consulting room to wait for my doctor. By now feeling like I was walking the medical equivalent of the Green Mile. You always have a little wait for the doctor to appear and we again joked about Schrodinger’s Cat as Steve voiced his wish for her to hurry up and I said I’d almost take that perpetual state of not knowing in that room at that moment as it was better than being told I was off the trial.

But without further delay my doctor arrived… with the trial nurse in tow. Another bad sign, normally it’s just the Doc. The CT-Scan was a page long, so she offered us the edited headlines which we gladly took.  First the one bit of good news: it was the first time I’ve had my head scanned and nothing is currently showing in the brain. But it was all downhill from there. The main killer headline was my measurable liver lesion had grown by more than the 20% allowed. Quite significantly more, and that meant I was not allowed to continue on the immunotherapy. They could have left me on the trial but another 2 months of that kind of progression and I’d be in liver failure with no options left. As it turns out the options are kind of thin on the ground anyway but we’ll get on to that later. On top of all that I now have widespread nodal involvement across much of my upper chest and down into the liver region. Before cancer I was barely aware I had lymph nodes and the importance of their job to drain toxins away, now I’m hearing about them in areas of my body I didn’t know existed and still can’t pronounce.  One of the nodes is pressing on an area where the liver and gallbladder drain which explains the gradual creeping up of my liver blood test results over the last month.  That can be dealt with with a stent should needs be.

Despite all the bad news we’ve still been having fun…

HARD TO BREATHE

But the most problematic area currently are my lungs which are quite frankly a bit of a mess. I haven’t been able to breathe well under any exertion for weeks now. The small pleural effusion – where fluid builds up in the cavity between the lung and ribs due to irritation from malignant cells there – turned into the massive one that 2.3 litres of fluid was drained off two weeks ago. My poor little lung was basically crumpled up like a ball of paper at the top of my chest, I was still doing a bit of work and podcasting and going to all the amazing events my fairy-godmother friends had got me tickets for.  One of the doctors told me how us younger and fitter patients tend to mask our symptoms more. Two nights in the Christie and I was pacing the wards like a caged animal waiting for the over-stretched weekend call doctor to come and take out the drain so I could get home to enjoy that sunny Saturday. There were some very poorly people on that ward and I knew I wasn’t one of them because I was desperate to get out. When I don’t care where I’m laying down, that’s when I’ll know I’m ill.

The CT showed the effusion hadn’t yet refilled, which is a very common thing to happen in this situation. But it showed a horrible condition called Lymphangitis is now developing where the lymph fluid isn’t being drained away from the lungs and they are gradually sucking up the remaining fluid like sponges and severely hampering my ability to breathe. There are also areas of inflammation in the lungs which is probably down to the immunotherapy ramping up. They put me on some steroids to try and calm the situation. My reaction – ‘I don’t want to be fat and have a moon-face’!!! Then overnight things deteriorated somewhat as I woke up every hour totally out of breath and just knowing that I needed oxygen. Add to that chills and a high temperature and oxygen sats of 74 on arrival at hospital and I was snatching the steroids out of their hands.

GOING BACKWARDS

So, I’m home now from another 2 nights in The hotel Christie. I was sent home in an ambulance on oxygen and had to agree to a ‘do not resuscitate order’. I have a bag full of pharmacy drugs that any dealer would be proud of. I am taking steroids by the bucket-load, and swallowing along with them my vain worries about dying fat! An Oxygen machine has been installed at home. I hate it, it is noisy and a sign of the creeping medicalisation of our home that I watched happen when my dad died. It has an incredibly long plastic tube attached to it so I can move around the house and garden. Anytime a toddler, dog or family member treads on it my head gets whipped back like Beyoncé in full swing.

So, the low down is – they had one more trial left for me at the Christie. I have already pre-screened and have the necessary mutation required to take part. But any respiratory issues must be stable. That means not being on oxygen and not having my lungs fill up with fluid again. I managed a full day without extra oxygen yesterday, now I just need my lungs to stay fluid free this week. The doctors said we just ‘need a few days of stability’ so I can sign up. I see them tomorrow, I’ll have my best game face on. Let’s do this.

GALLOWS HUMOUR GETS US THROUGH

I should mention that on the same day I got my bad news, my wonderful friend and fellow You, Me & the Big C podcaster Debs aka Bowelbabe also heard her cancer was back. She is still full of the fight for this as well and we have kept each other, and the rest of the You, Me and the Big C team, on Whatsapp amused with our death GIFs and plans for sponsored goody bags at our joint funeral. We have laughed about beating each other to the finish line in a race neither of us fiercely competitive ladies want to win. But if you don’t laugh you’ll cry and sometimes a GIF of two Grim-reapers chest bumping is just what you need to put a smile on your face!

That feeling when you finally find someone who GETS your death jokes!

FOR FRED

I have planned for some time to write a memoir for Freddie, just a book about all those old stories your parents tell you over the years and the advice they give you. I want to leave as much of an imprint of myself around him as possible. This has now given me the impetus to get started on that. As regular readers of my blog will know and as you’ll have garnered if you’ve read this far, I’m never one for brevity! So, it’s going to take a lot of my time up over the next few weeks to get everything down in a coherent and entertaining way for him.

 

I can’t thank you enough for all your support, I’ve been truly overwhelmed. Keep your positive affirmations coming my way and here’s hoping I get another shot at kicking this cancer where it hurts.

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71 Comments

  1. Tracey Savage
    July 17, 2018 / 4:25 pm

    Rachel you are one brave amazing lady and I admire you so much…I found your blog on the coldcap back in January and I can’t thank you enough,I completed my chemo for ovarian cancer back in May and managed to keep my hair,your advice helped me so much…I know you will keep fighting Rachel….sending you lots of love and positive vibes xxxxx

  2. Tim
    July 17, 2018 / 4:36 pm

    Gosh this is a heart-rending read – but as always you’re so honest, and you have a wonderful ability to smile through it all. We continue to send all of you all our very best xxxx

  3. Lucy Morris
    July 17, 2018 / 4:40 pm

    Dearest Rachel, there are no words. I have been thinking of you and hoping.. I will keep hoping and praying for you and your dear family.. your strength is an inspiration. With love.. Lucy xx

  4. Simon Keeping
    July 17, 2018 / 4:47 pm

    Thank you for sharing Rachael, my daughter Gracie is living with cancer and this whole journey seems slightly less surreal when you realise you are not alone. Wishing you all the best and sending lots of love xxx

  5. Nathalie
    July 17, 2018 / 4:48 pm

    My hopes and very best wishes for you. I can’t begin to imagine the fight you are in and but you are astounding and I wish your lungs a super speedy recovery so you can get on the next immune therapy and karate kick this thing.

  6. lucyleeallen
    July 17, 2018 / 4:50 pm

    Sending you lots of love and good wishes. You have a beautiful family x

  7. Bri
    July 17, 2018 / 4:53 pm

    Rach, I don’t really know what to say. I’m keeping every single thing crossed for you. Bri xx

  8. Sharon Marriott
    July 17, 2018 / 4:57 pm

    Hello Rachel. I started following your blog today. Thank you for sharing this most awful time in your life and helping us to understand all the things that go with it. Your positivity and bravery will be so beneficial to anyone fighting cancer now and in the future. Keep shining bright and kicking cancers ass xx

  9. July 17, 2018 / 5:01 pm

    Wow Rachel, I’ve been following you since February when my 7 year old son relapsed and we found out he needed another 2 years of Oncology care. I found the community of Oncology bloggers on Instagram so comforting and am truly grateful for the honesty and humour you have shared. I’ll have everything crossed that you get approved for the trial tomorrow. Lots of love and healing, positive vibes to you. Rachel Daley x

  10. July 17, 2018 / 5:17 pm

    Cancer sucks. Hopes and best wishes. Big positive vibes all round from one Rachel to another.

  11. Liz Twitchell
    July 17, 2018 / 5:18 pm

    Fingers crossed for some ‘lung stability’ and a chance on that new trial. All the very best to you and your family xx

  12. Jane Hamilton
    July 17, 2018 / 5:19 pm

    Today is the first time I have read your blog and I’m overwhelmed and with your bravery and passion to remain with us as long as possible.My heart goes out to you and your precious family.I know you will not want pity so I’m sending you oodles of positive thoughts and pray you hang around with us for a while longer.Take care xxx ❤️❤️

  13. Lisa Mortimore
    July 17, 2018 / 5:20 pm

    Cancer really does suck, I LOVE your spirit though – you’re a true inspiration to us all. Even through reading all your bad news the Beyoncé bit did still make me smile!! Got everything crossed for you and your family at such a worrying time x

  14. Sue Carson
    July 17, 2018 / 5:22 pm

    Rachel my partner is on immunotherapy for lung cancer and I am ever hopeful that this will work. Your blogs are amazing you are so strong. Sending you love and good wishes

  15. Mary Pennell
    July 17, 2018 / 5:23 pm

    Still never met you but feel I know you. You’re strength is infectious. Sharing your story has made me, and others, feel we are not alone and hopefullyall the messages you get in response to your experience give you some comfort too. Continue to cross everything for you xxxxx

  16. Joy
    July 17, 2018 / 5:27 pm

    You have been in my thoughts and prayers since I heard about you via Martine McCutcheons post.
    I have read and re-read your posts and was desperately hoping you would reach the 10k followers.
    You’re determination and the warmth that comes from your posts is truly inspirational….. your little Freddie will grow up knowing you have touched many people’s lives even complete strangers… an accomplishment that not everyone can say they achieved in what we all take for granted as a full life span.
    You have certainly touched my life…. so Thank you xx

  17. Rita Leaman
    July 17, 2018 / 5:27 pm

    If you want some gallow humour and honesty, my first thoughts on reading your scan news, were, “that’s deadly news.” D’oh! You are managing all this in a way that’s right for you and that’s right. My love to you all, as always. Rita

  18. Helen
    July 17, 2018 / 5:41 pm

    Rachel, I have been thinking about you and feared that your news was not good. I wish you all the best and hope for a miracle for you. Love Helen xxx

  19. Joanna
    July 17, 2018 / 5:46 pm

    Dear Rachael,
    I was really hoping you would have better news. Your blog and podcast have meant so much to me after my own diagnosis with breast cancer. You really have brought comfort and humour and insight to so many people and I am so grateful to you.
    Jo xxx

  20. Jo
    July 17, 2018 / 5:48 pm

    I’m doing my best to continue to live with stage 4 MBC. You are so very helpful and inspirational to me and you always look Ab Fab. Keep strong lovely lady with an amazing beautiful and bubbly personality.

  21. JO FRANCIS
    July 17, 2018 / 6:01 pm

    Dear Rachael, I hope your lungs behave and you can move onto the alternative trial soonest. KBO. Jo xx

  22. Jean
    July 17, 2018 / 6:10 pm

    Hi Rachel I have only started following you over the weekend. Wow just read your blog. I am recovering from breast cancer, thankfully cancer free (touchwood) can never say it without doing that. Omg people have said to me that I’ve been an inspiration but no I truly cannot measure up to you. I know it’s not a competition but your spirit just shines off the page. You are so my inspiration to live life and I cannot send you enough love and good thoughts. Since cancer diagnosis I have ‘met’ some wonderful people and you are one of them. Keep smiling when you can Rachel xxx

  23. July 17, 2018 / 6:15 pm

    Rachel – you are one brave lady..an inspiration to us all. Tears were rolling down my face at one stage but mixed with laughter as well at the gallows humour! Love and prayers xx

  24. Anne Boychuk (Canada)
    July 17, 2018 / 6:15 pm

    As a new follower I have just read your post. My heart breaks for you and your family. I send my best wishes for stability so you can participate in the new study and continue to fight this horrible disease.

  25. Jessica Olson
    July 17, 2018 / 6:23 pm

    Rachael, what a heart breaking read. Wishing you the best for the new trial and hope good news is on the way soon. You and the rest of the you me big c team have played such an important part in my own cancer journey and helped me in ways you will never know. Xx

  26. Joanne
    July 17, 2018 / 6:28 pm

    I’m so very sorry I so hoped this would be of help everything crossed for the new trail. God willing you’ll get the green light for it, your upbeat honest posts are lovely, sad, emotional while reading your ability to plough on through all this has to be acknowledged as I’m sure it’s so very difficult to comprehend. Your in my thoughts & prayers ❤🙏

  27. Elaine Ryder
    July 17, 2018 / 6:36 pm

    Your breaking my heart Rachael but making me laugh too! Have you tried cannabis oil.. nothing to loose girl… did u see the story in the daily mail today? Maybe get in touch with that lady.. she was given 6 weeks.. but now cancer free xx much 💗 love

  28. Ellen
    July 17, 2018 / 6:44 pm

    Gosh you are having it rough, I’ve had a few collapsed lungs in my time and a pleural effusion, they are horrid. So sorry you are going through this utter crap and I send all my love to you and your lovely family xxx

  29. Alan G
    July 17, 2018 / 6:53 pm

    my fingers are perpetually crossed for you Rachael – its amazing how many people your story is touching – long may it continue – good luck – we all love you xx

  30. Jo. X
    July 17, 2018 / 6:56 pm

    No words, so sending you a lot of love and support, you are a true inspiration X

  31. Dora Jones
    July 17, 2018 / 7:12 pm

    Rachel, you are amazing, your sense of humour hasn’t changed a bit. Your strength through all of this is incredible you truly are an inspiration to so many people who are also fighting as hard as they can. You are also inspirational to those who aren’t. You are so strong. I too hope your lungs settle down so there is another trial you can join. Sending you lots of love. Tonnes of love from Dora and Mark, and Sophie and Toby too xxxxxx

  32. Laura Northam
    July 17, 2018 / 7:19 pm

    Hi Rachel, thank you so much for sharing your thoughts and updates via your blog, I’ve loved following your story and chatting to you, you are such an inspiration and your strength is remarkable. Sending lots of hugs and positivity your way, fingers crossed for your miracle xx

  33. Rich Davis
    July 17, 2018 / 7:20 pm

    Amazing writing Rach and everything crossed that something positive comes out of getting in the next study!
    Good luck, best wishes for the family,
    Rich x

  34. Helen
    July 17, 2018 / 7:38 pm

    Been following your story for a while and just wanted to send you and Freddie and your husband all my love. ❤️❤️❤️

  35. Corinne
    July 17, 2018 / 7:52 pm

    Thank you for being brave enough to share all this. You are amazing and thank heavens for your husband being there to support you. Please keep writing – we need you. With love x

  36. Becca
    July 17, 2018 / 8:02 pm

    Sending you heartfelt support. I have been listening to your podcast recently and it is wonderful in so many ways – funny, informative, moving and inspiring and I can’t wait for the next series xxx thinking of you and bowelbabe and keeping everything crossed xxx

  37. Alyson
    July 17, 2018 / 8:26 pm

    Hi Rachel, I’m not given to writing comments to strangers but I used to work in Diagnostic Radiology at The Christie and regularly listened to you on 5 Live.
    I’m so sorry you’re having to spend so much time at Christies but I’m very glad they’re looking after you well and can tell you that all the staff there know just how fabulous the patients are – I met people who’ve stayed in my heart for my whole career.

    I hope your lungs start behaving themselves and the trial kicks cancer arse.

    Much love and best wishes,
    Alyson xx

  38. Huriye
    July 17, 2018 / 8:28 pm

    All the best for tomorrow’s clinic appointment Rachael, and I’m praying you will be accepted on the new trial. Also fingers crossed a publisher and agent contact you ASAP about the memoir for Freddie. He is such a gorgeous little boy, a combination of his beautiful, strong Mum and stoic Dad. I’m praying for all of you to remain as a family together for as long as possible. 💙💜💚🙏

  39. Marise Mitchell
    July 17, 2018 / 8:34 pm

    You feel like a friend. Write for Fred. X

  40. July 17, 2018 / 8:56 pm

    Thanks again for such a frank and honest description of what you’ve been getting up to recently.

    I feel so very sad about it all and as always I am praying hard for you all.

    God bless

    Mary x

  41. Jane Munro
    July 17, 2018 / 9:03 pm

    I am honestly totally heartbroken and I don’t even know you personally
    How you have remained so honest, articulate & humorous throughout this ordeal I have no idea
    You, Steven & Freddie do not deserve this and it is outcomes like the one you are dealing with that totally questions any hope I have about there being a god
    If I live long enough to give just 1% of the positive impact that you have had, I would consider myself to have achieved something
    What you have done is immeasurable and no matter what you have a legacy not just for Steve, Freddie & your family but for every single person you have helped, who has listened to you & who has prayed for you- you are a truly remarkable lady xx

  42. Sam U
    July 17, 2018 / 9:06 pm

    Dear Rachael, this is the very last thing any of us wanted to hear. Your generosity of spirit and selflessness, when most of us would have just put our heads under the duvet and wept, are amazing and inspirational. Please know that you are valued and loved by many who have never met you. Beautiful inside and out. Freddie will be very proud of you. Sending love and strength.

  43. Lynne
    July 17, 2018 / 9:43 pm

    Thank you for writing this. I don’t know how you do this but I’m very glad you do. Keep on keeping on Rachel. We are with you. Much love xx

  44. Jacqui
    July 17, 2018 / 10:04 pm

    ❤️❤️❤️

  45. Millie
    July 17, 2018 / 10:04 pm

    Sending you and @bowelbabe all the love and positive vibes I can muster. It’s shit, there isn’t much else you can say but we all have your back and we’ll be here to support you in any way we can. Lots of lovexx

  46. Jo
    July 17, 2018 / 10:08 pm

    New follower here, sending all the positive vibes your way. What a woman you are! Much love to you xxxxxx

  47. Helen
    July 17, 2018 / 10:48 pm

    Dear Rachael,
    I’ve followed your blog and tips on cold cap from the beginning and we even shared a comment of support as we both have young children. I remember listening to you on radio 5 whilst I was undergoing chemo and admiring you working through it all! I was even jealous you kept your hair and I didn’t at the time which in the grand scheme of things makes me feel pathetic! I have and will continue to send virtual hugs and strength. I have no words to take your pain and sadness away just love and admiration for you sharing your story and helping so many others at this difficult time. Praying for you and your beautiful family love Helen x

  48. Janet OCallaghan
    July 17, 2018 / 10:49 pm

    I was diagnosed with breast cancer the same time as you and googled everything to feel close to anyone going through the same treatment . I looked at different blogs and yours was the one I kept reading. Your candidness honesty and bravery through everything your going through is amazing, I send you all my prayers and love to help you through this xxx

  49. Jessica
    July 17, 2018 / 11:10 pm

    ♥️

  50. Shawn
    July 17, 2018 / 11:17 pm

    Firstly, I am never one to comment on anything via the internet, including Facebook for example.
    I am one of those ‘snoopy’ people that pretty much keep check on their friends and ‘liked’ pages, I think I ‘liked’ your Facebook page some years ago (must’ve heard you on the news!) and have kept an eye on your courageous battle. I just wanted to say how heartbreaking it is to read your latest blog, but at the same I also wanted to say how much I admire how brave you are. I wish yourself and your family my bestest wishes.

  51. Jennifer
    July 17, 2018 / 11:21 pm

    Thank you for sharing your experiences so candidly. My mum and I are with you every step as she fights cancer with all she has too. Much love and positive energy xx

  52. Tracy
    July 17, 2018 / 11:30 pm

    What an amazing, inspirational woman you are! Massive hugs and will be praying for you and your lungs 😘

  53. Annmarie
    July 18, 2018 / 1:18 am

    New follower… you really are an incredible woman. Stay strong and keep fighting x

  54. Wendy Malhan
    July 18, 2018 / 6:37 am

    Hi Rachel you are truly amazing and brave. I lost my mum who was 65 to cancer 8 weeks ago! It was the biggest shock of my life. She also had immunotherapy but unfortunately it only worked for a few weeks. She never accepted her fate and fought bravely until the end. Where ther is life there is hope a life is still life ieith cancer. None of us are guaranteed tomorrow. My sister in law who was 52 died of a sudden heart attack in February she was a non smoker non drinker and as fit as a fiddle. Life throws curve balls at us. Keep positive and hopeful. I hope they find a trial for you and you can carry on being a true inspiration for other sufferers. Xoxo

  55. Helena
    July 18, 2018 / 8:29 am

    Im not sure what to write but I just need to let you know, your blog has blown me away. You’re truly amazing. And your family too. Such strength and solidarity between you all. It is inspirational. Don’t underestimate the impact you are having. In return please enter today knowing you have my gratitude for your words and my continued support, I wish I could do more. Keep going and keep strong xxxxx

  56. Deborah Davies
    July 18, 2018 / 9:20 am

    Wow what remarkable woman you are. Truly wish you all very best on this hateful journey you find yourself on. Your son will be very proud of you I’m sure, and I hope by some miracle it’s a long time before he needs your memoir, xxxxx

  57. Kate Howells
    July 18, 2018 / 1:47 pm

    Dear Rachael, we only met ‘down the line’ when you recorded the Radio 4 Appeal from Salford, but I’m thinking of you and admiring your courage and strength. You are a great interpreter of medicine in terms I feel I can understand. I found the clarity of your blog astonishing, given that it’s your own body and life you are writing about. You are doing such good work in publicising the potential of research for women’s cancers. Your Radio 4 Appeal is really strong and I hope you’ll give it a blast so that as many people as possible hear it on Sunday (and donate!) All power to you, and admiration and love. Kate Howells (Radio 4 Appeal.) xxxxx

  58. John mcilroy
    July 18, 2018 / 10:58 pm

    Hi Rachael I’ve heard you on the radio for years…. from you reading the news on five live late at night, to you being a main presenter. You are a true inspiration. You certainly don’t bury your head in the sand. You face things head on. Good luck… you must be making so many people proud ( now and in the future) 😃

  59. July 18, 2018 / 11:44 pm

    The greatest legacy to Fred is your love.

  60. Marina murdoch
    July 19, 2018 / 12:01 am

    It is extremely spooky how much our lives are the same right now. I’m 38 single mum to a 14 and 7 ur old. Diagnosed TN April last year, got the full triple whammy of treatments, told May this year it had returned and spread. Given anything from 4 to 12 months to live depending on my response to treatment. I too have fluid on my lungs, just finished a 2nd dose of antibiotics for chest infection and have steroids I’m debating about taking, I joke I have a death rattle already. But seriously fear my breathing issues are going to be the death of me. Hope you get a reprieve and manage to get on the trial 🤞🏻I have my first treatment review beginning of August, judgement day is fast approaching 🤣. Best wishes Marina.

    • Niamh
      July 24, 2018 / 9:51 pm

      Marina, hang in there. Sending all positive wishes to you and your children. I hope you guys are getting to do some nice things in between all the not so nice things X

    • Sarah
      July 27, 2018 / 11:05 pm

      Good luck Marina, I hope you have lots of love and support surrounding you. Wishing you the very best and positive news for August.

  61. Niamh
    July 24, 2018 / 10:03 pm

    Rachael, wishing you only the best and that more options open up for you. In the meantime, glad you got to take a break and enjoy some family time and have some fun! X

  62. Karen Hunnisett
    July 26, 2018 / 2:01 pm

    I found that a very diificult read but your honesty is truly inspirational. You are a remarkable and beautiful lady inside and out and I am praying and keeping everything crossed that you get a reprieve and another trial. I know from experience how amazing the Christie are and if anyone can pull it off they can. Sending you all my love, heartfelt best wishes and strength in abundance. You can do this xx

  63. Steve Way
    July 27, 2018 / 9:55 am

    Hi Rachel,

    You are an absolute hero in what you are doing for those who have no option but to share your journey with Cancer and to those of us that do so because of the uplifting power of your work. I almost feel guilty to have tears in my eyes every time I read a post, either because things are looking up or, as in this case, because they are not.

    I have two daughters (14 and 5) and often look for suitable role models for them (Disney stars going off the rails not working for me!). I can hold you up as someone who has achieved so much in her chosen profession, found a fantastic partner in life, been a great Mum and has faced the worst possible circumstances with bravery, humour and good grace.

    As an avid Radio 5 listener you’ve been in my thoughts and prayers for some time now and will remain so. Should you get that publisher my daughters will each receive a hardback copy of the book you’re writing.

    I do so hope that you get on the next trial. Thank you for all you continue to do.

    Steve Way

  64. Marina Kaplan
    July 28, 2018 / 8:59 pm

    thinking about you — I also have metastatic TNBC. I’m on a promising clinical trial that has had fairly good results. It’s sacituzumab govitican, it is an antibody drug conjugate and was previously called IMMU-132 – it is now in phase 3 and I believe recruiting nationally.
    also, I had a great run with carboplatin – it was the best chemo for me (the more typical TNBC chemos such as adriamycin, cytoxan, taxol and eribulin did nothing for me) another chemo that is not typically used for TNBC that I had some success on was irinotecan. Hope this helps

  65. Marta Daniel
    August 11, 2018 / 9:44 pm

    Dear Rachel, tonight I’ve read your blog for the first time and I think you’re amazing. Keep up the fight and don’t lose your sense of humour. My thoughts and prayers are with you and your family.

  66. August 12, 2018 / 10:35 pm

    You’re an incredibly brave woman Rachael.

    I’m 41 with Stage IV lung cancer (never smoker). I was told in February it had spread to my brain in 6 locations and my bones in 2 locations, as well as the disease in my lung. I was rejected from all trials to which I applied. I then spent some time putting my own treatment plan together, based on some experimental drugs, some “repurposed” drugs that are used for other illnesses, and an immunotherapy drug. All in all, I put myself on a combo of 20 drugs, along with exercise and diet, which was very challenging. I found out in July that things had gone as well as I could have possibly hoped, with no evidence of disease on MR, CT, PET scans, or liquid biopsy. This result is unprecedented, and I’m so glad I decided to put my own treatment plan together after being rejected from the trials.

    I also have a 1-year-old son, who I hope I can spend more time with now.

    So, never give up hope!!!

  67. David Thompson
    August 12, 2018 / 10:35 pm

    Just come across your story. no words I have except now thinking of you and your family and humbled by what you are doing, love from all of us to all of you

  68. JS
    August 16, 2018 / 10:34 am

    You’re story is completely heart rendering to hear. You are an amazing person and the one thing (actually there are many!) that comes across is that you are completely filled with love for your son, family and friends. You are incredible x

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