My Roller Coaster
May 6, 2017 at 12:02 pm #10578
Hello again Catherine. I promised I would enlarge on my thoughts on attitude and give some practical advice, so here goes……
Nearing 70, and told that I have terminal cancer, my first thought was,’that’s very very bad’. My second thought was ‘I’ve had a wonderful life, a fantastic life, spent 25 years with my soulmate, a creative fulfilling career, have done extraordinary things, would I exchange a lesser life for a longer life? No.’ It was incredibly fortunate that our holiday in Japan was to include a stay at a Buddhist temple where the lodging included prayers at 5am. I didn’t want to just be an onlooker so about 3 months before we went I started doing mindfulness meditation. It didn’t help much with the Buddhist experience but has helped SO much with my terminal prognosis. I know it’s not for everyone and is difficult to learn without the hearing to do classes. I use an app on my iPad called Calm. The important sequence for me was the ’21 days of calm’ which has helped me. Key is acceptance. Getting upset about ones mortality makes you miserable, accepting mortality calms you. I feel I have learnt a lot since the prognosis. As a young woman I frequently had periods of anxiety which I learned to control but throughout my life have reoccurred periodically – don’t know why, not bad enough to seek advice, but the racing heart, fear and flight sensation would come upon me. That has gone. I no longer suffer from anxiety. When told you’re terminal anxiety diminishes, you simply accept the day and admire it. Insignificant worries disappear. Another aspect of mindfulness is gratitude. Before my diagnosis I had no idea how many people loved me. My husband of course, but we have neither of us brothers, sisters or children, both are only children so very little family left. The support given by friends has been jaw dropping. I had never truly recognised them for who they are. Gratitude. I’m grateful for every day. Most of us sleepwalk through life, working, getting children ready for school, doing the washing, sitting on the tube. A lack of awareness. That’s changed too. Colours are brighter, food tastes better, the clouds in the sky more beautiful. I watch people on the tube now, I see their lives, I see their humanity, they are wonderful.
We are all going to die, we are all of us terminal, but until something like cholangiocarcinoma happens we push it away and pretend it won’t happen to us. Acknowledging your mortality, looking at it in the face can take away fear – give the skeleton a name and you are in control. That for me was the scary bit – the idea of having no control. Living in fear of CC would give me no control, appreciating every day because of CC gives me lots of control.
Also being informed gives me control. Yes put your life in order, that’s something we should all do cancer or no cancer. I married Alfred because the cancer threatened us. Should have done that years ago. I needed to know that the prognosis was just 2 years so I could do with them those things that mattered to me and Alfred. Pay attention to what a specialist in cholangiocarcinoma says rather than a GP (who really can’t know very much about this somewhat rare cancer – it’s why you’re sent to a specialist) and remember even they can get a prognosis wrong. They are human. And statistics say that 2% with inoperable CC make it to 5 years. There’s something to aim for! But still get your life in order.
Think there are a number of reasons why I’m doing well at present.
Highest by far on the list is positive attitude. Enjoy life. Spend your time living not dying. Don’t panic!
Spend quality time with friends (and family)
Not having pain yet to contend with gives me more resources to combat the cancer, for that I’m lucky.
Be grateful for the invention of the metal biliary stent, it really makes you feel better, big time!
Don’t live for the future (that’s not living to the full) live NOW.
For me, the mindfulness and doing my art strengthens me emotionally.
I am under the hepatobiliary team at Royal Free hospital in London, my oncologist is Roopinder Gillmore, a lovely lady. The first 4 cycles of gemcis (each cycle 1 day a week for 2 weeks then a week off) were easy with very little in the way of side effects. When I had my chemo I visualised the chemo going in like little spinning blades attacking the cancer (which was lime green) the cancer being snipped away in little bits, and when I went to the loo (which you do frequently as saline water is pumped through you prior to your chemo and after) I pretended I was peeing out the cancer! Childish but liked doing that! I had some gastro upsets, odd smells and tastes, rather too much energy due to the steroids. I was expecting a month off to recover after the first 4 cycles, but that didn’t happen. It got tough during the final 2 cycles (cycles7&8) where they had taken me off the cisplatin to protect my hearing and upped the gemcitabine. The gemcitabine part can hurt when it’s being administered, and if it does, tell your dad to ask the nurse to run it slowly and to run it simultaneously with saline to dilute it. Makes it a lot easier. By the final cycles energy levels went down, (had been taken off the steroids along with the cisplatin) I had muscle cramps and rigidity, gastro and a nasty chemical taste in my mouth that would last days. They have now gone, my hair is beginning to thicken again, and the discomfort is worth it if it’s going to keep me alive to spend a bit more time with Alfred. For me the chemo for the most part did not take away much in the way of quality of life and I accept that being palliative it will be part of my life again when the cancer ceases to be stable. It’s a price I’m willing to pay. My cancer is wrapped round the artery entering the liver so there really is no way an operation is possible, but if chemo keeps me alive long enough, by the time my body starts rejecting it, which it will, there may well be the possibility of immunotherapy trials for CC which expensive though, it is could well be a cancer game changer. The only clinical trial I personally would consider would be immunotherapy. Others may not agree.
When having consultations, if you or your dad has a smart phone – record the conversation. It’s easy to forget major things, or get 2 versions of an opinion in an important consultation. Useful to play it back and check on the info.
At the end of the day I think that quality of life is more important than quantity, though you may not agree because you want to keep your dad in your life as long as you can. I’m living my life fully, and this is what your dad should do, and that can include chemo.
Fingers crossed for all of us! AnitaMay 6, 2017 at 8:02 pm #10579
Thanks for your message Julie
CatherineMay 6, 2017 at 8:09 pm #10580
Thank you for taking the time to reply to my email. I hope you have a lovely holiday in Brittany.
Dad is meeting the oncologist the week after next and his jaundice has fully cleared. I would love to receive more advice on attitude and tips re chemo . I’m trying to keep positive at the moment and would love nothing more than to be able to keep Dads spirits up. I am happy to share my email if this could be done. If not, I will follow your posts on this forum.
Thanks again and enjoy France .
CatherineMay 18, 2017 at 8:16 pm #10639
Thank you again for taking the time to email me. I really do appreciate it. I am going to share your email with my Mum and Dad as I know they will benefit from your advice.
By way of update, Dad met his oncologist Mr. Bird on Tuesday. It is the first time in 5 weeks that I have seen the twinkle back in my Dad’s eyes. They felt very reassured by him, and for the first time since this awful prognosis Dad felt that he was being given a fighting chance. The Oncologist spent a great deal of time with my parents explaining the treatment. Dad has stage 4 CC, and it has spread to the lungs. He will be starting the chemotherapy ( the gem/cis regime) next Monday. He has to get a hearing test, flu vaccine, and his teeth checked before then. Even though he is going for Chemo, he is so positive about it and wants to get started ASAP. He is not going to take this disease lying down!
He discussed immunotherapy with Mr. Bird but at the moment, it may not realise any better results. He would need to get a sample of the cancer cells from the lungs or bile duct, which may be difficult to get and these must be sent to Manchester. While this is being done, his Chemo would be delayed. But if the Chemo goes well , and he gets to a stable stage, then it would certainly be worth looking into.
Thank you again for your insight and advice.
CatherineJune 13, 2017 at 1:52 pm #10739
YES!!!……….all still stable .No spread. Another 3 months chemo holiday!!! Got my wish!June 14, 2017 at 11:12 am #10767
Thank you for the update and for sharing your news.
Enjoy your chemo holiday!
JulieJune 14, 2017 at 10:53 pm #10770
I’m delighted for you. Enjoy the chemo holiday .
CatherineJune 18, 2017 at 4:53 pm #10785
I just thought I’d pop in here to say thanks for sharing the very good news about your ‘chemo holiday’ – relish every day (as I’m sure you will!)
Your post for Catherine on 6th May is just amazing – you write so eloquently about your outlook on life since your diagnosis, and your positivity is truly uplifting.
Have you read Ram Dass, ‘Be here now’? You put me in mind very much of his thinking – and it’s a lesson all of us could do with taking on board …
With all good wishes
HelenJune 19, 2017 at 8:44 pm #10787
Just thought I’d let you know my Dad got great news today.
You may recall my Dad was diagnosed with stage iv bile duct cancer at Easter, with mets to the lungs. He completed his fourth session of gem/ cisplatin regime chemo today. His Consultant visited him on the chemo ward to say that his bloods show that the tumour in the bile duct has reduced significantly ( 60%). While he cannot comment on his lungs, the hope is Dad is responding very well as he has no respiratory issues at the moment. It’s the best piece of news he has got in weeks and he is over the moon. So far no nasty side effects either ( save a rash on his face).
He is a warrior and I hope this post gives other warriors hope .
Catherine .June 19, 2017 at 9:25 pm #10788
Catherine I am SO pleased. Totally delighted! Thanks for letting us know how your dad’s getting on and power to him. Let us all try to put these little monsters behind bars where they deserve to be!
AnitaSeptember 8, 2017 at 10:31 pm #11224
What a shock! Stepped off the scaffold again. At clinic today have been told that the cancer remains stable and I have another 3 months chemo holiday. That will be 6 months of chemo giving 9 whole months of serious living! Can’t believe it! Why? I am so lucky! I remain a palliative person living life to the full. My wonderful oncologist offered to put me forward for a cutting edge clinical trial with a different type of radiotherapy for which I thanked her but said no. So long as the cancer remains stable I don’t want to rock the boat and am happy to go back to the GemCis when the monster wakes up. She knows that I will listen very carefully to an offer of immunotherapy, but that’s not on the table – yet. Maybe in the future it will be and if it is I’m sure she will let me know.
Meanwhile I am working hard on an exhibition called ‘Hidden Messages’ which will open on 24th October until 3rd November at the Menier Gallery, 51 Southwark St, London SE1 1 RU. I will be sharing the show with Alfred Huckett, my best friend, husband, and greatest support. Part of the show will include a wall installation called ‘Cholangiocarcinoma Helpline’ in which are my talisman – ‘Cholangiocarcinoma Showgirl’ being one of them. The work has been described as ‘challenging her situation with a mixture of displeasure, indignation and a large dose of grim humour.’ True. Well described. The preview is on the 24th October 6 – 8pm. It will be party time and will probably be crowded so I won’t be able to talk to people easily, especially with my rubbish hearing, but I invite you. There were times when I honestly thought I would not be there, this to be my bucket trip exhibition – that was perhaps a bit premature. I will be there throughout the show, so if there is anyone in the London area standing up to the Cholangiocarcinoma monster who would like a hug, you know where to find me.
Attachments:You must be logged in to view attached files.September 11, 2017 at 10:51 am #12385
What very good news on two fronts, Anita!
We’re delighted to hear about your exhibition, which will include your ‘Cholangiocarcinoma Helpline” installation – I’ll make sure the date is in AMMF’s events diary. And what great news that your cancer has remained stable. Obviously, keep on doing whatever it is you are doing!!February 5, 2018 at 1:37 pm #13166
Sitting in the red chair again, chemo started anew last week, got through my exhibition by the skin of the teeth. Won’t dare do that again, but so pleased to have had that one last, and very personal exhibition. Didn’t want a bucket list holiday but a bucket list show. The nine months of fitness the first bout of chemo treatment gave me, allowed my show. Finished cycle 8 in March, was stable until November when the CT scan came up poor stable, so a negative result was expected and sure enough the cancer has moved from the biliary tree into the liver so another 6 months of chemo, hopefully for another reprieve to do something special.
This time though, things are not so straight forward because in about September I developed gastro problems which turned out to be severe small intestine bacterial overgrowth and bile acid malabsorption both conditions affecting the enzymes coming from the pancreas. I’m hoping this will not be my nemesis but presently it’s making life more difficult than the cancer, giving gut pain, bloating, flatulence, diarrhoea and more. And theres the chemo. Trying to treat these multiple conditions is no easy task, not least trying to jigsaw the medications together. Apparently there is a susceptibility to these issues with bile duct cancer but not automatic – I’ve been unlucky on this one.
So a bit of a hermit at present, the Gastro problems keeping me pinned down, but I thought I’d write this to say that I’m still here, still living, still looking to the future.
AnitaFebruary 5, 2018 at 2:47 pm #13168
Welcome back to the forum and good to hear from you again.
Sorry that you are having a difficult time at the moment but as always your positive outlook for the future shines through.
All of us at AMMF send you our very warmest wishes.
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