My Roller Coaster
August 26, 2016 at 2:30 pm #9366
10th June 2016
Some of you may know that Alfred and I have just had a fantastic holiday in Japan. We were there for a month. Just returned. But it wasn’t ALL fantastic.
The first thing that wasn’t fantastic was an irritating kind of upset tummy (change of diet?). Nor was the itching fantastic. Now this has happened before in heat, and it was hot, about 30 degrees at times. My pee was unusually dark (really should drink more water, especially in the heat). Three weeks into the holiday I didn’t think my eyes looked right and asked Alfred if he would take a close look and tell me if the whites were turning yellow. They were. I emailed my GP and asked if these symptoms could hold until my return in a weeks time or should I get medical advice in Japan. She said to see a doctor immediately. We were in rural Japan in the mountains. Cancelled our guest house forthwith and set out for the long journey to Tokyo where we found St Luke’s International Hospital. Blood, ultrasound and finally a CT scan. The diagnosis was not good. Obstructive jaundice suspected Cholangiocarcinoma. The doctor said we should return to UK as soon as possible. The medical advisor at the travel insurance wasn’t happy or convinced that I was fit to fly and insisted that we returned to the hospital for another set of blood tests. By this time I looked like a buttercup, the readings relating to the bile had deteriorated, were deemed critical and no way could I fly. Went into hospital the following morning for an operation to try and clear the blockage from the neck of the bile duct with a stent and also investigate the potential cancer. I was in hospital for 4 days. Yesterday I was given the news that the tumour was malignant, had started to spread to my arteries and that an operation to remove the cancer would not be feasible without immediate chemotherapy to shrink it. I was discharged today. We are still in Japan, the insurers are working on getting us a flight home as fast as possible.
I am dealing with this and am strong. We are both very focussed. We decided to tell all our friends en masse so the story doesn’t have to be continually repeated. Also I don’t want to have to cope with too much of my friends upset, it would weaken me, upset me, and I need to stay strong.
I will press the ‘send’ button for this mail when we manage to get back to the UK, and for those friends round London please forgive us if we don’t meet up for a short while, we will be trying to find the best treatment possible.
Love to you all
22nd June 2016
This drama really should be scripted and turned into a television series as it would be worthy of a bafta………….
Unfortunately the treatment hasn’t started. As my diagnosis wasn’t made in Britain I’m not on the conveyor belt. I’ve been referred to the Royal Free in London but can’t get started until my case has been discussed by the various consultants. I was due to come up at last Tuesday’s meeting but they wanted the scans I brought back from Japan on disc before I could be included on the list. The secretary tried so hard to get a message through to Alfred’s phone, but what we didn’t know was that O2 had switched off his voicemail due to ‘suspicious activity’ in that we were in Japan! You need security measures for being outside the country? At least tell us! So she wasn’t able to leave the message, and by the time she got hold of him we had missed the deadline for the meeting which means another week is lost. All a bit unfortunate due to the aggressive nature of this cancer. We are doing all we can. Alfred was on the secretaries doorstep Monday with the discs, to no avail, my case won’t be discussed until next Tuesday, two and a half weeks after the doc in Japan said I needed the chemo immediately. The way my lucks holding the Royal Free computers won’t be able to read the Japanese format!!
Feel a bit like flotsam flying on the winds of fickle fate.
I’m not in pain. I have discomfort that paracetamol sorts out and the itching remains intense at times. That’s the worse bit. Alfred and I got married today, simple ceremony at Camden Town hall with 2 witnesses. Presently we are on the top of London, literally. For our wedding night we have been watching the sun set over the city from the hotel at the top of the Shard. In front of us is the Gherkin and the Cheese grater and the rather ugly Walkie Talkie. To our right the Tower of London and tower bridge.
Who has time for chemo with this busy schedule.
I’m in good nick mentally helped by the fact that I started doing mindfulness meditation about 3 months ago and am reaping the rewards of having done that now. I have lived more in my 68 years than many people have in 98 – think of the years and adventures on our boat Reveller, the 24 year playtime with Alfred, few responsibilities, the early years of exhibitions ultimately the west end shows – I’ve had it all. It really is a case of ‘don’t cry for me’. I’m just so grateful for everything that’s happened in my life, all the people I’ve met, my wonderful friends, I’ve been so privileged.
24th June 2016
News hot off the press…… I have an appointment to see a doctor from the Hepatobiliary and Pancreatic surgery team at the Royal Free on Tuesday at 2pm. Seeing as the assessments are carried out on the Tuesday morning and I already have the first appointment in the afternoon maybe I finally have their attention!
30th June 2016
The meeting on Tuesday was a bit of a damp squib really.The surgeon just concurred with the Japanese opinion that the cancer’s inoperable unless chemo can shrink the tumour, though I did learn a bit more in that the cancer is in a very awkward place at a conjunction of ducts and arteries going through the liver. I said I would like another set of scans as I want to know exactly what the situation is since 3 weeks have past. They said they hoped to get me an appointment to discuss options with the oncologist on Friday, tomorrow, but this hasn’t happened. My first appointment with an oncologist will not be until 8th July. The surgeon said I should have chest scans and at the same time would repeat the gastro scans. When? I have no idea. No appointment has been booked by him. He said he would organise it. One month on from Dr Okamoto saying that it was imperative that I started chemo immediately I still will not have been given any treatment. I’m losing faith in the NHS ability to move at any speed even at a famous hospital like Royal Free. Feeling a bit low at the moment.
7th July 2016
Mini crisis last night when I noticed my eyes going yellow at the peripheries – tried so hard to get advice from the Royal free to no avail, went to see GP who is very supportive and I think quietly as fed up as me about the service I am getting. He could not voice it but could be seen in his eyes
8th July 2016
I had a VERY good meeting with the oncologist today who I warmed to immediately. A delightfully enthusiastic positive energetic young woman with a wonderfully clear voice. Had up to date blood tests on my iPad via my GP’s instigation which showed her immediately that the stent in my bile duct had failed (my yellow tan might have given her a clue too). So chemo will still be delayed, but this time for good reason in that the jaundice must go as it would be dangerous to mix the two. The stent must be replaced. Will be having the scans for this on Monday or Tuesday (I hope) in order to have the jaundice (and the horrendous stinging ITCHING which is becoming……..no words!) organised within 2 weeks when she wants the chemo to start. So close to things happening now! So close!
And I’ve found out more. The cancer is in such a position that there is very little likely hood of surgery thus a cure even if the chemo shrank it so we are talking management. So…..The ultimate question….it had to be asked…….what is the prognosis? On a rocky road where things didn’t go too well I could have a MINIMUM of a year. A whole year! If things do go well (and why shouldn’t they?) I would have longer! We had been looking at the possibility of months. Asked Alfred if he regretted marrying me seeing as I’m going to be about to disrupt his life somewhat more than expected. Couldn’t squash his smiles. Tell you this. If I get the extra couple of years or so – they are going to COUNT! No I’m not going to be traveling the world (who would insure me anyway). If in the garden I’m really going to be in the garden. If I draw I’m really going to draw. I shall pay attention to the small things in life having discovered they are as important as the big.
AND with the type of chemo I shall be having I won’t loose my hair. It might damage my hearing though, but then my hearing is so damaged already I probably wouldn’t notice.
9th July 2016
After all my enthusiasm and a vision of treatment being started this is almost embarrassing to relate……… My first CT scans to deal with the jaundice are booked in for 25th July. That is in 2 weeks time and on the day I thought I was to start my chemo which of course can’t be started until the jaundice has gone. Another two weeks delay. I feel like weeping. I have contacted Dr G’s secretary and she is trying to get hold of Dr G to get more details of my treatment plan. I can’t comprehend it. The jaundice is worse than it was when I was considered critical in Japan, my skin a rather lovely mellow Asian tone, but I would rather it a blotchy Caucasian pink and this horrendous itching stop. It’s all very dispiriting and I’m not doing very well in making each day count!
12th July 2016
Would love to tell you that all is launched and on the move but the waiting game continues. I was supposed to have heard from Dr G’s secretary the plan for the stent replacement yesterday but no email came. Have just mailed her to ask what is happening. I’m sure the doctors are excellent at the Royal free but the administration is dreadful. Or maybe there are simply too many patients for too few staff.
The plan for the chemo once the jaundice has been sorted and the bilirubin is on the way down, is weekly on a Monday over 2 weeks then a week off, this for 6 months with a gap after 3 months for recovery. The drugs they are intending to use are Gemcitabine and Cisplatin combination to start with. This is the preferred one, but if I notice my hearing deteriorating they will switch to Oxaliplatin. The hearing damage with the preferred option is usually tinnitus which I have already and loss in the high frequencies which I also have already so think I will be ok with the GemCis option as the damage it could cause is already done.
I have a shiny new stent and to prove it here is a gory picture of it in place!!! Chance for the itching to go! Yes the procedure was uncomfortable but the mindfulness was a godsend –
Stay with the breath, be with the breath, think only of the breath, there is nothing to do here except focus on my breath.
As a result I was as still as a rock throughout and they couldn’t believe how chirpy I was in the recovery room. It was euphoria, it had been a success with no complications and I had got my stent in place without even a sore throat. Alfred came to get me with the intention of getting a taxi to take my battered body home, but I preferred to get a bus, go to Ruby Violets ice cream parlour and celebrate with a salted caramel cornet. Collapsed now, think the anesthetic has worn off and am sore, and in this heat who isn’t collapsing, so am in bed and knackered.
I have an appointment on Friday to see the oncologist and on Monday for the scans (which I thought were necessary for the stent but obviously not). They took brushings during the stent replacement so I imagine that this along with the scans will give some idea of the cancer staging. But I might be wrong again!
30th July 2016
Just come back from the Royal Free appointment and Dr G is not happy with the placement of the famous stent – it has been put too high and has entered one of the biliary branches blocking the other, so has to be removed and another one inserted before chemo can start, another 2 weeks at least. And I have to go through that unpleasant procedure again. 3rd time.
But why am I not tearing my hair out over this? Fed up about it true, but the good news overwhelms the bad, which is that the tumour has not grown or altered in any way since the Japanese scans two months ago! So it doesn’t matter that chemo hasn’t yet started. That is mega good news and I am smiling! She is also in contact with and liaising with the Japanese doctors to discuss their findings and compare. Doctors talking to each other around the world. Precious Dr G is obviously bigger than the rules of the NHS and I am so glad she is my oncologist.
No idea when the stent is going in but it has to be before the pre chemo assessment on 12th and the first chemo session on 15th both of which are booked in. My guess is that it will be next week rather than this.
3 August 2016
My husband has just listened to a message on my phone which was left yesterday telling me that my stent replacement will be on 11th August at 9am. Wondering if this is cutting things a bit fine as I have an appointment with Dr G the following day at 10.45 and pre chemo assessment in the afternoon. When they did the previous stent placement I slept the whole of the next day recovering from the sedative and with discomfort from the endoscopic procedure. I don’t think I will be very perky for my appointments. What do you think?
15th August 2016
FINALLY am sitting in bay 3 of the Chemotherapy Unit at the Royal Free Hospital in London. Day 1 of the first cycle. The 3rd stent endoscopy was somewhat uncomfortable but the recovery time a fraction of the previous two times due to being so fit I think. Really fit and well. No real jaundice bringing me low to deal with.
Pre chemo assessment led to Saturday being a serious in depth house cleaning day and from now on trips to restaurants will have to be at times when they have very few customers. If I still have my taste buds. No theatres, no crowds, no public transport at rush hour. No coughing or sneezing anywhere near me please! Dreaded infections. And I must remember the hand washing and yet more hand washing and even remembering to empty the washing up bowl! Never remember to empty the washing up bowl. Still not sure why I’m doing this. Feeling so fit and alive at present and am walking with my eyes open into the grim world of chemo. Three months to see how I go. Quality is more important than quantity in life and if doing the chemo gives me a bit of an extended future with the quality I’ve got now then it will be worth it. At the moment don’t know what side effects I shall succumb to, fatigue certainly, but as for the rest? We shall see.
22 August 2016
One week of chemo finished. Presently here at Royal free getting dose two and not had any side effects yet. I know it’s accumulative and may well be sitting in the corner gaining malicious strength to bite me – but a good start! Have put 3.5 kilos on since my lowest weight – which is good – however it’s all gone on my middle. Removed from arms and legs and displaced to belly and hips so am no longer a Jerry Hall clothes hanger. Good job I didn’t buy those jeans a size smaller. All is well.
August 28, 2016 at 10:35 am #9369
- This topic was modified 7 months ago by Anita.
Firstly, welcome to AMMF’s Discussion Board, and to our CC Family – certainly not a family any of us would join by choice, of course, but one in which, as in all good families, we support each other and we’re there for each other.
You certainly have been on a rollercoaster since first noticing your symptoms in Japan, and I’m sure many of us will sympathise readily with the frustrations you have been through with the NHS , not to mention the difficulties in getting that stent in the right place – which is incredibly important.
Looking for the positives, it is good that there has been no disease progression since those initial scans, and that you are under the care of the Royal Free, which is one of the UK centres that really does understand Cholangiocarcinoma. The Gem/Cis chemo is considered the best regime for inoperable disease and many people do very well on it. Chemo side effects are not compulsory (!) and it’s great that you are coping so well, but you are right, the effects can be cumulative as the treatment cycles go on. Again, though, many manage with few side effects other than fatigue, so fingers crossed for you.
Thank you for sharing your story so eloquently with us, and I hope you will come back often with updates. There is a wealth of information on AMMF’s website, and we here to help if we possibly can.
PS Congratulations to you and Alfred on your wedding!September 11, 2016 at 6:51 am #9395
I have just read your amazingly detailed post and wanted to thank you for sharing your story with us all. I do believe that reading about the highs and lows that others have had on their cancer travels is both inspiring and supportive and certainly you did that for me.
I have had CC for nearly 6 years now and at some point I will get to telling everyone my story at some point… In the meantime keep up that positive attitude – it is so helpful whatever is happening.
HelenSeptember 17, 2016 at 10:23 pm #9415
Thank you for your encouraging words, and I do feel encouraged. The right choice was made I think in going to the Royal Free. The decision was made from my researches which would have been so much more informed if I had found the AMMF site earlier, but I really appreciate having found it now. A valuable resource for us all. Thank you.
Have just finished cycle 2 of 4 cycles of GemCist after which another set of scans will tell what the next course of action will be. I do have some side effects now, but nothing I can’t deal with – some IBS, a bit of reflux (lots of fresh ginger tea helps), some strange hearing disturbances (I am hearing everything double – not all the time – but often when one person speaks it sounds like 2 people) but most of all I still have ENERGY! Don’t know where its coming from. Must be the steroids. If so keep them coming I say! No sickness. Got my hair. All is well.
AnitaSeptember 17, 2016 at 11:07 pm #9416
Dear Helen T
You have had CC for 6 years – I would love to hear your story.
In terms of the positive attitude, I think its the only one to have. Since being diagnosed and now having started treatment, I am noticing that this condition doesn’t simply take away, but can contribute to life as well. Colours are brighter, friends are more precious, I make time for the spontaneous, there is an awareness, a focus, a wholeness.It’s as if I’m really living as never before and as a result the world is offering opportunities which I probably would not have even noticed previously, being too busy getting on with life. I have never been as happy as I am now. A high maybe, and there will be lows, there has to be. We are all of us terminal, but some of us just have a bit more information, and that information can contribute to a freedom if you let it. Sometimes I find it hard to stop smiling, which is rather absurd really. It’s not hysteria honest! I want to live as long as I can, would like to stay in this bright light and feel that the CC is perhaps aiding that focus. Wouldn’t choose to have it, but if it’s with me anyway……..let it bestow the good as well as the bad!
AnitaSeptember 18, 2016 at 10:44 am #9417
Thank you so much for coming back with a progress report!
I’m very glad to know that you are coping well with the Gem/Cis – and that you still have your energy (steroids definitely help in that department) and that you have kept your hair.
And it’s great to read from your reply to HelenT (who is herself an absolutely amazing lady) that you are finding positives in all this. You make me think of Ram Dass and his philosophy of ‘Be here now” – certainly a useful lesson for all of us.
Good to know that ginger tea is helping with your reflux. You may have already found this organization, but the Penny Brohn charity in the UK are pioneering in their ‘whole life’ approach to helping people with cancer – and they have useful hints and tips on how to deal with treatment side effects, nutrition, supplements etc. Their site is certainly worth a look:
Keep thinking positively, Anita – and please come back and update us when you can.
Helen xxFebruary 21, 2017 at 8:21 pm #10229
, your story is absolutely inspirational! My mum has just been diagnosed and I had become quite negative tonight about what is in store for her and us but reading this has given me hope.
I am pleased to read that GemCis worked well for you and that you were able to continue with normal life. My main worry being that my mum is currently well in
herself and I don’t want chemo to destroy this.
Mum’s story is much the same as your one in the way that she turned yellow quite suddenly and had terrible itching. She also had a stent fitted in the incorrect place and a new one will be re done next week following the bilary drain she has had in this week. I am anxious that time is going on without the chemo starting just as you were but I guess once the stent is in and settled this will all be put into place. You seem to manage just taking each day as it comes very well. I am hoping we can do the same.
Thank youMarch 16, 2017 at 10:52 am #10360
Thought it was time for an update. The first 4 cycles of chemo (gemcis) were unexpectedly a doddle for me, the steroids giving a ridiculous amount of energy, enough to do a lot of work and man a 4 day art fair, though the downside was that the energy continued during the night and made me desperate for bread and jam which put weight on. I was even able to go to the gym to try and keep the weight sensible.
Email 19th October 2016
Just thought I’d let you know about the meeting with the oncologist today. Very good news. She has told me that the chemo has worked amazingly well. The tumour has shrunk by a third, there has been no spread (frequently goes to the lungs and the liver – but not with me so far), the lymph node spread remains local, no movement there from the last scan, my case is due to come up with the entire team to discuss whether I might have moved from inoperable to operable. Has said to expect a no to this, but the fact that the question is even being asked is extraordinary. She is going to send me a synopsis of the meeting when it takes place. Would like to be a fly on the wall for that. Meanwhile I start another 4 cycles of chemo on Monday. Suddenly I’m very enthusiastic about chemo even though it is beginning to nick some of my hair – it’s WORKING!!! Can’t ask for better than that!
It wasn’t until Christmas that I had any problems. Went out on a jaunt with a friend in crowded transport central London and we both caught flu, mine of course landed me in A&E, though just for one night. It lasted a long time, lung infections with breathlessness, and side affects started to accrue, though have to say that my healthy friend was actually sicker than me with the flu, it was a nasty virus. The main side effect was blood clots up my nose (platelet problems). I refused to take nasal cream prescribed as on the info leaflet it said not to use it if you had hearing problems as a side effect of it could be hearing damage. Was willing to risk my small amount of hearing for chemo but not for a bloody nose which could be controlled admirably with NeilMed sinus wash and vitamin E oil. My clinic appraisal decided to remove the cause of the nasal and possible hearing problems by removing the cisplatin and leaving me with the gemcitabine alone, and the nasal problems stopped. The second cycle of the new regime saw the white blood cells going too low to have the chemo, but that was just one week out, managed to scrape through on the cusp for the rest. Got a bit paranoid about going out in case I caught something with so little immunity (memories of flu) and bought myself an Airtamer to wear around my neck (look it up on Amazon). This and lashings of hand sanitiser gave me confidence to continue normal life.The last few weeks of the chemo gave a new side effect in that the muscles in my neck arms and hands went stiff and ached like mad. Skin on my arms and hands very sensitive. This went away as soon as the chemo stopped. That one would have been complained about if it had happened earlier.
Then the CT scan, and the meeting with my lovely oncologist and the e mail to my friends
10th March 2017
The clinical / oncologist meeting today went just about as good as it could for someone who has got to remain palliative. Over the last 3 months the tumour has reduced AGAIN. There has been no spread and the cancer is considered stable. NO MORE CHEMO for a while. So pleased there’s no more chemo, the final cycle got a bit heavy. 3 months chemo holiday then scan, clinical assessment and repeat until the little devil wakes up again. Normal life, no bruised hands, hair will thicken again, you may sneeze near me though I’d prefer that you didn’t. New prognosis? Difficult one really, but remains the same as it was at initial diagnosis but starting as of now, so 1-2 years with the 8 months since original diagnosis as a bonus. Keep moving the goalposts like this and I might live forever.
So there we are! That’s where I am at present. I did ask Dr Gillmore at the meeting why was it that I have never had any pain (this could be one of the reasons for my resilience) and she said that the tumour was located in a place where there were no pain receptors. I said ‘Aren’t I lucky!’ She said ‘Well not really as it’s wrapped round your artery going into your liver which makes it inoperable’. I don’t do pain very well so I do think there’s a bit of luck here even if it’s just for the moment.
I have made a talisman to help with the luck. It’s a cholangiocarcinoma necklace. She’s yellow because of the jaundice, you may notice the bile ducts in her tummy (seaweed), she’s swimming mermaid like through her problems and in her head is her life force (the blue gem). I dedicate it to all of us. May it bring us luck.
I have posted a photo of her on my art blogspot which can be accessed on http://anitaford.blogspot.co.ukMarch 16, 2017 at 11:10 am #10361
Your mum and I really have followed a similar path in our CC journey!
I delayed my reply to you because I was hoping to give you more good news to pass on to your mum.You can only take each day as it comes as you say, otherwise you loose yourself in upset. These days are precious, and need to be lived.This is true of course of everyone, but we in this unenviable position have the opportunity to put it into practice. If your mum responds as I have to the chemo, it’s very do-able! Im assuming that she must have Perihilar cc (though that may not be so) to have such similar experience, and maybe very little pain. The chemo may be a bit uncomfortable at the end game, but it doesn’t necessarily put you in bed, even with the stiffness of hands I still managed to make my necklace. Most of my chemo experience was positive. I have had my hearing re-tested at ENT and the additional effects had nothing to do with the chemotherapy but with an ongoing eustachian tube problem, so when the tumour becomes active again I will happily go back on the Gemcis regime if that is considered appropriate.
My best wishes to you and your mum. Spring is here – let’s enjoy it! AnitaMarch 17, 2017 at 7:35 am #10363
I am so pleased to read your update. I was waiting and checking to see how you are getting on. How lovely to have a bit of a break now too.
Do you have a personal e mail or is there a way to pm people on these boards?
SummerMarch 17, 2017 at 9:46 am #10364
Unfortunately we don’t have the facility to PM users on the forum and we recommend, as per our forum guidelines, that you don’t swap contact details as the forums are public your posts may appear in internet searches.
You could either use the PM facility on Facebook, or AMMF can act as an intermediary and help you both to exchange addresses, if both of you agree to it. Please contact email@example.com
I hope this helps.
JulieMarch 18, 2017 at 11:00 pm #10366
I’ve given permission via Julie’s link to ammf to give you my email address.
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