My CC Story

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This topic contains 12 replies, has 6 voices, and was last updated by  RachaelC 8 months ago.

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  • #9242

    RachaelC
    Participant

    I am a 43 year old mum of 4 and I was diagnosed with Stage IV Cholangiocarcinoma on December 29th 2015. 

    However my CC journey began in the Autumn of 2015 when I started getting a niggly shoulder pain that wouldn’t go away, my skin started to itch all over (and there was no rash and it was not helped with antihistamines) and I was tired 24/7 no matter how much sleep I was getting. I had had my son Charley in September 2014 so could put a lot of my symptoms down to normal post new baby stuff, and even when i went to the GP and told her I wasn’t ok and described what was happening to me, she gave me antidepressants and put my symptoms down to anxiety and stress.

    Two weeks after I had been given those antidepressants, in November 2015, I fell very ill and was blue-lighted via ambulance to a local A & E department with a suspected gall stone attack. After an ultrasound it was believed that a gall stone had got trapped in my bile duct and the subsequent serious infection had backed up into my gall bladder and started to turn it septic, hence the excruciating pain I was in, the jaundice and the itching. I had an emergency ERCP and a metal and a plastic stent were put in place in my main bile duct and after 4 days on IV antibiotics in hospital, I was sent home with the promise that within 4 weeks I would be readmitted to have my gall bladder removed.

    On December 16 2015 I received a phone call informing me of a cancellation and that if I could come in the following day i could be put on a list for the day surgery and removal of my gall bladder. The following day I went in at lunch time, saw the anaesthetist and sat waiting for the surgeon. When he arrived he examined me, asked me some questions and then said – “I am not prepared to do your op as your liver feels inflamed…it shouldn’t be…we need to find out why before we do any operation in that area.” So I was admitted for further tests and after 4 days of scans, an MRI and an ultrasound I was told they had found large mass in my liver and I needed to have a biopsy to find out what was going on. The biopsy was carried out the following week and by December 29th we were told to come in to see the consultant who had refused to do the original op. His words were: “I’m sorry Mrs Cornish. You have inoperable cancer. It is throughout your liver, your biliary system and your abdominal lining. You need to prepare yourself for the worst. Less than 12 months…”

    In January 2016 I began an 8 cycle Gemcitabine/Cysplatin chemo combo treatment, under the care of Dr Harpreet Wasan, to hopefully shrink the tumours and to keep me here for as long as possible. I have just finished those and am now taking 2 months off so my systems can recover before the next stage of this CC journey. I have tolerated the chemo well and am physically feeling ok. The side effects have been a pain – I lost my hair in March and am constantly tired but apart from that I have been very lucky. My last liver bloods showed that my liver function is normal…which considering how ill I am supposed to be is really amazing. My last scan, carried out at the end of May 2016 showed no change after 6 chemo cycles from my original diagnosis in December. So the chemo is controlling the disease but not shrinking the tumours. Therefore my condition is still classed as Inoperable and terminal. I have sought a second opinion and am now looking forward to hearing if anything can be done differently to what is being proposed for the autumn. After my 2 month treatment holiday I am to be given another scan to see if there has been any change since May. Then it will either be have some more Gem/Cis chemo or maybe they will try something else…who knows.

    Life has taken a twist for my family, a curve ball has been thrown that we would never have dreamed would happen to us, and we are having to readjust where we are going and what we are as a family as a result. Our ‘normal’ has had to change in so many huge huge ways. But every day I wake up is a blessing. Every moment I am alive and breathing, living and loving is celebrated. Cholangiocarcinoma is like an unwelcome house guest right now – unfortunately she appears to be here to stay for a while, so I need to come to terms with her presence, the mess she has brought into our lives and make the best of it… for the moment until she decides to move out. 

    #9246

    Helen_ammf
    Moderator

    Welcome to AMMF’s discussion forum, Rachael.

    Thank you for this amazingly eloquent and courageous description of what has happened in your life, and that of your family, over the last months since cholangiocarcinoma decided to make itself known.

    The description of your visit to the GP, your earliest symptoms and how your diagnosis was reached, and your treatments and side effects, will be familiar to some and incredibly helpful information to many. I’m sure many will come in and be encouraged add their own comments and share their experiences with you.

    Cholangiocarcinoma can do many things to a person, but it has met its match in your indomitable spirit!

    Enjoy your chemo holiday, and come back and update us often!

    #9247

    RachaelC
    Participant

    Thank you Helen – it is an honour and a privilege to be a part of the AMMF family, and to be able to share my story with others on the Forum.

    Cholangiocarcinoma can only affect your life in a negative way if you let it – that is the message that needs to be put out there. It cannot take away who you are, it cannot change your character and it cannot destroy your life unless you allow it to. I have become more ‘me’ than I ever was since my diagnosis and I am loving that. I am scared about what the future may hold, and that I will be taken away from those i love sooner than i had wanted to be but I don’t know when that will happen, so when the fear comes in I recognise it for what it is, say hello, shake its hand, talk to it and let it go. It never stays for long, there is too much that is beautiful and magical and happy in my life for it to be a permanent fixture.

    It is strange but before i had cancer I did not realise how happy and blessed I was. This disease has given me almost as much as it threatens to take away. I am liking me more than I have ever done, I am at peace with who i am and I am no longer afraid of showing how much i love life and those people in my life because I have such huge amounts of love and support being shown to me. Every new twist and turn that this path we are now on is to be embraced for the learning experience it is. No regrets, no weeping and wailing about the situation, it is what it is, and i accept it with an open heart and mind for to do otherwise would only cause unnecessary pain and sadness. Getting cancer is a random event, its noones fault least of all mine. I just picked the short straw this time around….and so i have to make the best of the hand i have been dealt for my sake and that of my family. If my children see how I deal with adversity what better role model do they have for what life will throw at them in the future.

    Thank you to all at AMMF for your love, friendship and support. You help make this journey dealable with and i could not do it with the positive attitude i have if I did not have you there as part of my army to fight along side me.

    #9282

    Clare
    Participant

    Hi Rachael, Thank you for sharing your CC journey – I somehow missed that you were only diagnosed at the end of last year. I love your positivity. Sending you some more through the cosmos tonight. x

    Clare

    The light of a star continues so shine long after the star itself is gone.

    #9296

    Amanda
    Participant

    My dearest Rachael, your words speak my thoughts too at full volume. We can only look & keep moving forward. We have hundreds & thousands of reasons to live, with our families being a major driving force.
    Take care warrior woman.
    Amanda

    #9305

    RachaelC
    Participant

    Amanda and Clare thank you both for your kind and supportive posts. Your strength and positive vibes are more than i could ask for… Much love and light always. Rachael xx

    #9709

    RachaelC
    Participant

    I just wanted to update this forum with where this CC journey is taking me.
    I have had a break from chemo (GemCit combo) since the end of July which has been great. I have been regularly scanned and have also had a second opinion in that time which has given me hope and confidence in my treatment thus far. Everything in the last few months, over the summer, has stayed stable and it has felt like we were winning this battle but that is no longer the case.
    Yesterday I received the latest CT scan results at my monthly oncologist meeting. Not good news really. The facts are that the cancer has now spread inside my liver, there are new tumours and not just ‘spots’ that could be related to an infection I had last month. And there was I thinking that maybe for just a little while the score was Cancer 0 – Rachael 1….Looks like its more of a draw now which is (plain and simple) JUST NOT FAIR!!!!!
    I will be starting chemo again in the next couple of weeks. I am to be treated with Oxaliplatin and Capecitabine this time. I was told that there is no guarantee this will work but that after 3 cycles they will know whether to continue or to stop the treatment. The bonus is that it appears to be only a short time at the chemo unit for the Oxaliplatin drip and then I can take the other chemo drug in tablet form at home.
    I have so enjoyed the respite from chemo over the summer and in a way I think I had almost convinced myself that that was all that was needed to win the war. Licking my wounds I had celebrated the sunny days and warm nights with my friends and family, and happiness came home to Chalkyfield Cottage in a riot of BBQs and normal life…I had gone back to almost being me, just Rachael, not Rachael with Cancer.
    Two weeks ago when I started feeling a little worse for wear and my pain meds were upped to 24/7 Morphine, I knew in the depths of my heart that things were not going to stay the same for long. I even had the courage to begin talking about what will happen when the disease hits again and ‘comes back’. But talking about it with a chosen few is so not the same as hearing the oncologists words in a cold, clinical consultants room. Seeing Richards face set in a mask of pain and his grip on my hand get tighter was the reality of it all. This disease is going to kill me and maybe sooner than we had all wanted to hear.
    On the way home yesterday I told a few of my closest friends and family via text message. When we got back I told the girls and mum. Today I wrote the Facebook post and told the rest of my army. But I have yet to cry and the bubble of panic I want to set free keeps rising and falling on the crest of a wave I seem to be controlling without really knowing why. I should be able to let go and allow myself the tear or two, and some messages I have received to day have nearly made that happen.
    Part of me is still wanting to scream out  Monty Python style “I’m not dead yet!!!”…the other part is whispering in my own voice “But you nearly are!!!”. Maybe that’s the problem – the not knowing when its going to happen. It’s still not my time to go but the truth of the matter is I don’t think I will ever be able to say it is the right time…how can it be when there is still so much to see, so much to do, so much to live for.
    There are so many questions I want to ask but have no way of getting an answer for. Questions like will the new chemo work like the old combo, and will it hold back the cancer flood gates? Or will it not work and play tricks on us all and then the cancer can carry on marching me headlong towards the sunset when all I want to do is look back at the sunrise and stay there. Stay there because the sunrise promises hope and a whole day of warmth…not the dark, not the cold of nightfall, not the extinguishing of light.
    It is rather poetic that this news has hit at the start of autumn if you think about it…but I will try to be positive and strong because really I have no choice…I owe it to everyone around me to remain so. To Richard, to my children, to my family and friends, to those who I hardly know yet have taken time out of their lives to support me. 
    This is a real ramble of words I know but an accurate description of the inside of my head today. Time for a nap and a reboot. 

    #9710

    Anita
    Participant

    Dear Rachael
    Your eloquence in relating what is happening in your life is astounding. Your willingness to share what is happening in your heart as well as in your body embraces us all. Reading your account I cried for you, for your family, for me, for my husband, for all of us facing this dreadful struggle. It did me good. Like you I haven’t done too much crying and it can be a release. Then, like you, I look at my blessings and cherish every day I have with those I love. I stopped crying. I smiled. We are not sleepwalking through life. Thank you Rachael for letting us know who you are and sharing yourself with us.

    I send you my very best thoughts and wishes,

    Anita

    #9712

    Helen_ammf
    Moderator

    Anita, Thank you so much for you lovely reply to Rachael. You understand so well what Rachael is going through and you both have a wonderfully kind openness in allowing us to share a little of the experiences you are undergoing.

    Dear Rachael

    To receive such devastating news is the most shattering blow – and there are no glib phrases or soothing words that can make this situation any better for you. I certainly can’t pretend this isn’t what it is, nor offer false hopes.

    Your eloquent observations and open honesty are truly touching, and your words are powerful. So, remember this, Rachael – absolutely no matter what, you are not a statistic. You are you – and that can never be changed.

    Anita puts it so well when she explains that she looks at her blessings and cherishes every day she has with her loved ones. It’s not always easy for any of us to do that, but just being in the here and now is something all of us should focus on.

    You are about to start on more chemo, so please know you have many positive thoughts coming your way for that. And please keep us updated …

    Helen xx

    PS If you’re not already aware of Ram Dass, have a google, (“Be here now”). He is inspirational …

    #9727

    Martins1602
    Participant

    Rachael,

    Your story sounds very close to mine although I had a predisposing condition. Diagnosed 22/12, same chemo programme but 12 cycles Jan 2015, very good response in my case with significant shrinkage at 3 and 6 months but the tumour just started regrowing as soon as streatment stopped so now starting a FOLFOX programme in a week or so, another 6 months of chemo (that’ll be 12 out of 15 months under Chemo) so there can be options after the Cisplatin/Gemcitabine cycle. 

    Now retiring under ill health, 16/17 and 13/14 (6th Nov and Dec) boy and girl which has been a challenge. Remain positive and fit, I’m convinced that’s the best approach!

    Martin

    #9765

    RachaelC
    Participant

    Thank you Anita, Martin and Helen for your kind, supportive and caring responses to my post. Know that anything written is much appreciated and taken to heart and cherished.
    It is now one week on from starting my new chemo regime, Oxaliplatin/Capecitabine combo, and I am doing ok. The first hospital infusion of the Oxaliplatin was tough going and kept me at one in bed for a few days recovering, but apart from that I seem to be responding to it ok. I have also been prescribed anti anxiety meds as my hospice nurse felt I was getting a bit too wobbly and needed a little boost to help me fight and get my mojo back. They are working too and for the first time in weeks I feel like I am coming home.
    I am also going to get my CC profiled for the gene mutation FGFR 1 and am off to London next week for a meeting to begin that process. I think the key here is taking back what control you can from the cancer and letting ti know in no uncertain terms that it may win the occasional battle BUT IT WILL NEVER WIN THE WAR!!!!!
    To all going through this journey as a patient or a carer please know the road is rocky, it is hard, it painful, it is cruel but we can walk it safely and with faith in the end goal of success because we have no choice. We lucky few who have the support of AMMF and Helen and her team are blessed indeed. WE owe it to them and all those who have lost the fight never to give up.

    #9769

    Martins1602
    Participant

    Agree with everything you say Rachel and take any support available that helps you to remain positive and focussed, none of this is easy and you can’t expect to get through it all without some external help be that medication or personal support.

    My first FOLFOX treatment seemed fine, few limits side effects including feeling uncomfortable and gripe in my gall bladder and abdomen area for a few days post treatment which required me to up my pain meds for a few days (now dropped back to before), I’m taking this as a good sign. Started a new gym regime yesterday as I can’t do what I was with a PICC line in, have never been a major gym person before although I have always been active, the irony is that I’m probably fitter and healthier than I have ever been, certainly since I was a teenager which is too may years ago! However, I am convinced that positivity and focus on fitness contributed to my positive reaction to my first round of chemo (which did shrink the tumours significantly, albeit they started growing again) and am loathe to change anything.

    #10178

    RachaelC
    Participant

    Update: After a CT scan in January my results have showed that the Oxaliplatin and Capecitabine chemo combo was not suited to me and the disease had gone rather rampant throughout my body. I now have multiple tumours in my bones and lungs as well as new ones in my liver and lymph nodes. I have had emergency radiotherapy to alleviate symptoms on tumours in my shoulder blade and two vertebrae (these ones of particular concern as they are putting pressure on my spinal canal). My options now although limited are still there – and I have chosen to go down the clinical trials route with the research tam at Guys Hospital in London headed up by the wonderful caring Dr Sarker. After an initial meeting it was decided to put me on steroids to get my energy levels back up and then next week I am off for a meeting to discuss participating in a Phase 1 trial TAS-130. 
    Emotionally I am still a little shell shocked at the aggressive nature that my CC seems to have. I have my moments of panic when i look at my kids and the fear creeps in that my time is so limited with them….that I won’t be able to grow old and grey with my husband. Its just not fair….its as simple as that. But I am an optimistic soul at heart and I know that every moment left has to count for something so each day I wake up I make a concerted effort to look at the small things that will make the memories special, that will mean my life has counted for something. 
    So its onwards and upwards for Team Cornish. The fight is far from over, the war is yet to be won. We can do this, we will do this. Through living and loving anything is still possible, there is no such word as CAN’T!!!

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