November 25th 2021 a worried consultant got me a CT scan to see what was going on and the result were much more positive than my state of being suggested. I am still in a 'stable' state. Nothing nasty has grown, my CA 125 has shot up but that could be in reaction to the etopiside pills.
Thursday Dec 2nd 2021 I finally had enough fluid to drain out of my abdomen, so spent the day on a hospital bed reading a novel, unable to concentrate on anything more taxing. Some relief ! ! ! they took 5 and a half litres out of me !!!!!!
My sister came and looked after me for 4 days. Absolutely bliss.
Next consultation I discovered I was anaemic so the next action was to have a blood transfusion ! ! ! Vampire Jones anyone?
Wednesday 15th December 2021. 2 hours for one bag of blood to go through, 1 and a half hours for the second bag of blood to go through, no nasty side effects, another day of sitting on a hospital bed reading. Flashes of vampire movies pulsing though my brain.
Thursday 16th December 2021 A consultation revealed that my platelets had shot up to 158 Wowzer !!!!! We Hey ! Great News but all the other graphs ( blood enzymes and other counts that I don't understand) were going in the wrong direction. (I think my CA 125 has gone supernova, I didn't ask the specific number.)
I am unable to eat enough because of swelling belly( the fluid has started to come back again) so I am threatened with especially prepared fortified meals in drink form, EEW! This should also help my swelling feet and now legs too. We shall see.
Plan of action.I am booked in to have and ultrasound and possible drain on Tuesday 21st December 2021 Consultant is hoping the blood transfusion will help my body regain a balance and I won't have to drain. She will then give me etopiside pills to take away for xmas. First I had 2 days worth, the next time 3 days and she's hoping to give me 4 days worth of the drug to kick me into the new year in a better state.
Here endeth my litany of woes but hey we have a plan and I can escape my bedroom for a week and visit family over xmas.
Friday 5th November 2021
I got my first dose of Etopiside chemo in pill form + 50% of Carbolatin. Spent the day waiting for weird side effects to appear but luckily, nothing more than I already have for carboplatin. My sense of style is totally confused. Because of my big belly I've abandoned trousers and belts and am now sporting soft jersey yoga trousers, leg warmers and an outsize baggy jumper. A cross between a dancer, a bad boy with low slung trousers and an ancient punk with a wonky mohican. It is all topped off with an old 1950's parka. A confused style statement if ever there was one!
Thursday 11th November 2021
My platelets are smashed down to 22 so no treatment for me this week. My feet have swelled up again so I was whisked off to ultrasound just to check I did not have a blood clot in my leg oh and they checked for fluid in the abdomen but there was not enough to warrant an draining procedure. Phew ! A close shave. No blood clots thank goodness.
Thursday 18th November 2021
My platelets are still going in the wrong direction! They've gone down to 18 Halleliwia ! No treatment for me this week. I just have to wait it out and pray they come up enough to have chemo on Friday. The plan is just to have the etopiside chemo and leave the carboplatin out of the picture. Their mistake was to give me both. You don't know until you try, trial and error! It's all a bit random! The good news is that they do think the etopiside is doing some good because my liver function which had plateaued over the last few weeks started to go in the right direction again. How bizarre that all this is happening inside me and I have no idea and nothing I do or eat or drink makes a blind bit of difference. Apologies for the over use of the exclamation marks in this paragraph.
Two weeks ago my platelets were 36 so I could not have treatment. During that week my belly ballooned. The next week I was able to have 50% chemo but still my belly was expanding. Tomorrow I can have 60% of the chemo Hurray! perhaps that will bring down my belly. I'm waddling around like bad boy with the tops of my trousers slung low on my hips and of course when I walk the trousers gradually fall down. Oooh errrr
CT scan result show that everything is STABLE ! ! ! No growth, no disturbing change to anything. My liver function is getting closer to normal. I was tested for anaemia and a few other things but all came back normal. The consultant does not know why my belly is big given all my scan results and blood results. Its a connundrum! Possibly next week I shall have another chemo in pill form to go with my weekly carboplatin dose.
Meanwhile here's a banner I have been making for Extinction Rebellion, many of whom are heading off to Cop 26 in Glasgow for November to make a lot of noise.
The plan is working. Weekly infusions at a reduced dose to enable my platelets to recover enough before the next session. Another 6 or 12 weeks of Friday sessions. The first 2 days after treatment pretty nauseous but come Monday I'm so much better. My strength is returning, the fatigue is lessening a little every day. I am able to even walk some distance now. So happy that recovery is turning out just way my consultant described.
I am thanking my lucky stars.
Thanking the NHS
Thanking all the teams of wonderful people looking after me in their different departments.
Thank you Thank you Thank you
A little something to tickle your fancy this morning. Thanks Sheena for finding this gem for me.
https://www.youtube.com/watch?v=TivU77pOwoo&list=PL4Ahm8aMt_WuHBgchsCeyzOqDZzEp2DV5&index=15
Here's to moving forwards and sometimes backwards and knowing it will take a long time.
Friday chemo day
4 little dexamethasone 2mg and 1Metoclopramide 10 mg
Some kind of antihistamin to stop my body rejecting the drug
Half hour infusion of Carboplatin with a flush for a few minutes either side.
Saturday 4 dexamethasone 2 mg
1 apixaban for thining the blood 2,5 mg x 2
1 Valsartan 40 mg for lowering blood pressure
Sunday 4 dexamethasone 2 mg
1 apixaban for thining the blood 2,5 mg x 2
1 Valsartan 40 mg for lowering blood pressure
Monday 2 dexamethasone 2 mg
1 apixaban for thinning the blood 2,5 mg x 2
1 Valsartan 40 mg for lowering blood pressure
Tuesday 2 dexamethasone 2 mg
1 apixaban for thinning the blood 2,5 mg x 2
1 Valsartan 40 mg for lowering blood pressure
Wednesday
1 apixaban for thinning the blood 2,5 mg x 2
1 Valsartan 40 mg for lowering blood pressure
Thursday
1 apixaban for thinning the blood 2,5 mg x 2
1 Valsartan 40 mg for lowering blood pressure
Friday oooooh its chemo day again.
Two more weeks every Friday then hopefully a full blast with 3 weeks in between.
I could see the relief in my consultants face as she tells me good news and has found a drug that is working for me now. After today's treatment I have 3 more once a week at 30% and then possibly a full blast every 3 weeks to finish the course off. It is a plan, a way forward.
I am so relieved to hear that as my liver recovers then my belly will go down and the fatigue will get less. I had horrors of hearing that the fatigue would stay with me the full course for six months ! ! !
I have strangely swollen feet, a bit like Beryl Cook's paintings of buxom women with feet in colourful strappy sandals. I look at them and don't recognise them at all, they are not mine. I am wearing somebody else's feet !
An excited and positive meeting with consultant with some good news. The idea of a 30% dose of Carboplatin once a week to get back on track and give my body a chance to recover for weekly sessions has worked so far. Finally some good news. I immediately felt better. Extraordinary how a few words can transform a situation. How my entire look out onto my potential future can turn in a second. After months of being in limbo, uncertain, unknown, this is such a relief.
I was shown a graph of my liver which was rocketing sky high but as soon as I had the first dose it dropped like a stone a definate v shape undeniably going in the other direction. Ha Ha How I love that graph. Ive been warned that this is a slow process back, I will feel pretty shit for a couple of weeks and then after that things should get a little easier. I can handle that I think to myself, so much easier to deal with than the unknown.
Meanwhile Fatigue is a new beast for me. Who would have thought standing up took so much energy or even sitting in a chair took so many muscles. Walking upstairs is a mission and a half. I feel so fortunate I did not experience this at all last year. My feet have swelled up and I have more protein in my blood than I should have. The theory is that the chemo will sort out these conditions as the cancer in my liver reduces and is contained.
So to patience and distraction to get me through the next few weeks after which I can walk out again into my life.
Here are the details
https://mailchi.mp/03be22cda0d9/mothership-video-a-project-leading-up-to-cop26
Tuesday 10 August 2021
Meeting with the consultant on Tuesday we made a plan. It was agreed that Gemcitabine was not working and demolished my platelets to much to be able to give me the correct dosage. We talked about Carboplatin and how it had really worked quite quickly on its own the first time I ever had chemo a year ago. I had mentioned this before but at the time they were thinking about a pill form of chemo. So because my platelets are struggling she suggested that she give me a Carboplatin dose 30% once a week for three weeks to enable my bloods to recover in between times and maybe we could get back to the place where the cancer is contained. I like a plan it, seems like a good one.
I had another CT scan, the results of which I'm not really looking forward to hearing about but I understand that they need a marked at the start of a new treatment to compare previous scans. I also had another ultrasound scan to see if there was any fluid to drain but once again there wasn't enough to warrant the procedure.
The chemo on Friday went off without a hitch. They gave me a blast of antihistamine to stop my body rejecting the drug. Apparently the body recognises that it has had it before and may rebel and make nasty rashes and weirdness. Luckily I was ok during the infusion. Apparently I might suffer from more extreme side effects this time round.
Since then I have been plagued by fatigue, swollen belly and nausea to different degrees. I really did not know what a sledgehammer fatigue could be. I was so lucky I did not experience that the first time round. I'm sleeping and snoozing loads and watching tv series and re reading books on my ipad. A weird in limbo existence. Catapulted back to the beginning of my cancer journey. Strangely It never occurred to me that I would go backwards and regress.
One week later and things have not improved. The fluey achey bones and fever symptoms lasted for 3 days but thankfully stopped then. The feeling full, nausea and swollen belly kept on getting worse. On Thursday I rang the help line and described my symptoms and they put me through to the Xray dept. “Have you ever had a drain love?” I was thinking that perhaps I had ascetis and an ultra sound scan would tell me what was going on. Luckily they could fit me in on Thursday morning. Alas and alack I did not have enough fluid to warrant a draining procedure. Whilst on the one hand I was relieved, on the other it meant there was no quick fix, I still had to waddle around with my big belly. These were the original symptoms I had endured a year ago just before my first session of chemo. Such a dispiriting idea that here I was a year on and the cancer was obviously growing once more.
My platelets had gone down to 63 once more.... aaaaah.... all the Papaya I could eat and umpteen bowls of bone broth was no match for the Gemcitabine. My CA125 which was 600 had gone up to 930. So the consultant has decided that my body cannot handle Gemcitabine, even at a lower dose (which she thought would make a difference). There has to be another plan. So now I have to wait for a face to face consultation on Tuesday and find out more about this next drug they want to try me on....Etoposide..... The one good thing is that they can give it to me in pill form. In theory once I get better I am not so constrained to so many appointments in Cardiff every week.
Tricky thing the mind, and handling expectations. I was so convinced that this drug would work and I would get well. It was a wrench to realise it was not working a week later and that my body could not handle the drug regime anyway. I always feel better when there is a plan, a marker in time when I will find things out, even if it is days away and I have to waddle around holding my belly in the meantime. A time line somehow squashes the fear of the unknown:- What is happening? Why is this happening? Is this normal in stage 4 ovarian cancer patients? Is it such a lottery which drugs work and which don't?
Here's hoping my clothes still fit me by Tuesday's meeting. I tell myself take a day at a time and don't think too far ahead.
One day after treatment.... I feel like I've been run over by a bus. Last night full of aches and pains and fluey and feverish. I even put a wet cloth on my forehead at one point to lower the fever (dramatic I know!) A rain storm pounding the earth after days and days of sunshine. Even as I was writhing around in bed I was thinking yes yes go go Gemcitabine, destroy my cancer, obliterate it from my body. The strangest thoughts pop into your mind at 3am. I am totally wiped out this morning but feeling quite hopeful that I might be able to get back to a life that is not purely about managing symptoms......... so boring. I am desperate to think about something else. To plan for something to happen in the future rather than be in limbo 'waiting'.
Go Go Gemcitabine !!!
The third treatment was cancelled as my platelets are not up to it. This plan does not seem to be working very well ha ha. So I chat with consultant and she suggests staying with the same drug but giving me a lower dose as in 60% and hope that my platelets will be able to recover in a week. I discovered that this is one of the side effects of Gemcitibine and happens quite often. So we chat about what can help my platelets recover and she suggested papaya. There is something in it that helps. It is not scientifically proven but she thinks it is a good idea. The draw back was that I still have to wait another week and a half before starting this treatment again as they could not fit me in before my allotted time.
This last week I have been managing my original symptoms again. The bloated stomach, feeling full, the nausea, the back ache. One night was bad enough for me to take pain killers at 2 am but then I did get to sleep. A year on and my cancer is obviously growing again. I am not as bad as I was when it was first discovered but its a sobering thought that we still have not found the one to contain it successfully. So back onto paracetamol to contain the symptoms.
I have spent some time getting rid of papers from files, clearing out the detritus of the last 14 years. How satisfying ripping up and chucking down papers through the attic hatch.
Other than that I am having special times on beaches with special friends I have not seen for a very long time as this sunny spell floats us into summer. Today I am painting my wall, some more inspirational poetry for the residents of Splott to read as they wander past.
I am realising that this process is relentless. There is no 'when I finish chemo' story at the moment, not until we find a drug that works on me ha ha. Consultants don't know why the drug starts to work and then stops working. It feels like pot luck what might work and what might not. So my fate is in the lap of the Gods. Which gods might those be I hear you ask?
Friday July 2 2021
Second treatment cancelled as my platelets are not up to sufficient strength. I feel like I've just got out of a school exam and I've suddenly got a free week to do stuff without 'managing' symptoms woo hoo! T'is beautiful and sunny. I was a bit wobbly around the edges getting out of the car when I got home after having my bloods done. I was planning a walk in the woods but then thought better of it. I am coming back into myself a little more each day. Perhaps by next week I might feel normal again. Even a simple appointment can slip away and be elusive in this chemo world.
So my future has shrunk
to a weekly event that may or may not happen....... Shrodinger's cat
anyone?
YES the bad news knocked me for six. This time it took me about a week to come out of my doldrums and get on top of things again. Outwardly nobody would be able to see but I had this feeling of doom and gloom and a black cloud hanging over me with an undertow of 'what's the point of anything'. I resorted to watching endless episodes of Silent Witness and reading a book from cover to cover in a day, anything so I did not have to face up to reality. Distraction distraction distraction. The thing is...... the news was not new. I knew this was the process right from my first diagnosis a year ago. They have a number of drugs to try and if one does not work they move onto the next one. It was more devastating because initially it seemed to be working and I made all these plans which just cruelly evaporated into thin air.
In the process of coming out of my well of self pity I did remember how loved and supported I feel on this journey. How many extraordinary wonderful creative people I know and have known and worked with in my life. It has been a rich tapestry of experiences. If I don't have that much time left then I cherish and celebrate my life so far and all who I have come across not forgetting the myriads of NHS workers who have guided me through a year of treatments and will be there for this next bit.
Organising, video editing and recording a soundtrack for the Red Rebel Brigade action in Porthcawl as part of a nation wide Extinction Rebellion demonstration leading up to the June G7 Conference in Cornwall
https://vimeo.com/559689467 the soundtrack alone is available on my bandcamp page
https://sianedjones.bandcamp.com/track/red-rebel-brigade-porthcawl-2021
The Pearl of Pearl Street grafiti wall visits Aberystwyth in Oriel Lockdown
https://mailchi.mp/1f23489e6c18/oriel-lockdown-aberystwyth-arts-centre
Tuesday 15 June 2021 A bit of a blow Knock me sideways K E R P O W ! ! !
OK so last month everything was going so well. My CA125 was coming down from 400 to 134 NICE ! indicating that the cancer was under control. This month IT'S NOT WORKING !!!
My CA125 has started to go up again and it is at 254.....not good. The reality is that my white blood cells as in neutrophils are 1.1 and they need to be a bit more over 1 to go ahead with treatment. There is what the doctors call a progression of cancer in my liver from 1.5 cm to 2.1 a 6 millimeter increase in size and also its growing in my spleen too but they did not have specific measurements. There is a new cancer on my peritoneal. The good news is that the original site of the cancer remains 'unchanged', is stable inside my pelvis including the ovaries and fallopian tubes.
So this Caelyx drug did work for a while and stabalised the cancer and sent my CA125 downwards but then this last month it has started to grow again. I was ever the optimist and was looking forward to planning my next 3 months of work on a treatment I knew my body could handle pretty well without too many horrible side effects. Now of course it is like I have to start again with a new treatment and I don't know how I am going to react to it. Start Again.....Into the Unknown.....
I have agreed to have a new drug called Gemcitabine. I have it once a week for 3 weeks then I have a week off then start the cycle again for 3 cycles then they will do another scan and see if this drug is working. It takes about an hour for the drug to go through the cannula.
Right I'm off to research Gemcitabine and see what nasties I have in store. Apart from the normal fatigue and nausea with reduced blood counts the only side effect that was mentioned was a kind of fluey achey pains kind of thing.
Wednesday 19 May 2021
Good News, my bloods are normal and my CA125 has come down from 400 to 134. R E S U L T ! That means the treatment is working. I have had an extra week of normality because of the Scottish trip. The Scottish trip was a blast. What a treat to actually sing with other people again. What a treat to meet with people I have not seen in over a year or more. To have a meal with a different person. What a treat to see different landscape, Scottish mountains and lakes and beautiful sky and puffy clouds. We were lucky with the weather with sunshine both days. Life affirming remembering that I am a singer and that is my profession and it's what I do. Remembering the quality of performing and being totally in the moment when I am singing.
On a slightly different tack, my headaches returned even after halving the ramipril dose. SO after 3 days without anything I got a prescription for valsartan at 40 mg. Six days on and so far no headaches and my blood pressure is coing down nicely. Crossed fingers and toes this one works for me.
We are sad to say that Sianed died yesterday 31 January. In accordance with her wishes there with be a celebration of her life, probably in ...
