Hi all
Here’s the website if you’d like to sponsor our Nello cycle ride on Sunday 24th June in aid of Force Cancer charity. I’m cycling 55 miles and Neil is cycling 100 miles.
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A happy ending
The trouble with feeling so well is that I end up far too busy to update my blog! It’s all good news. I had a CT scan last week, met the oncologist yesterday who told us that all the scans show no sign of cancer. Deirdre is a distant memory and this is my final post.
I have to meet my oncologist every 3 months for the next year, then every 6 months for another year then finished. I don’t need any more scans unless I report something unusual.
We read a poster at the hospital yesterday pointing out how beneficial exercise is for cancer patients in recovery. I think we’ve got that covered! Two weeks ago we walked up from sea level to the top of the Rock of Gibraltar and I was hardly even breathless. 
We’ve joined a local outdoor swimming club and Neil and I swim most mornings. I’m cycling further and further on my electric bike and the gardening is going well. We’re back singing with the choir and joining them in the pub afterwards, so life is pretty much back to normal. The blues episode I mentioned in the last post never came back, probably because I can do pretty much everything I did before. I’m just loving life and getting fitter although I do have a way to go to get back to the fitness level I had before. I’m now training for a 55 mile cycle ride fundraising for our local Force cancer charity. I haven’t set up a link to the fundraising page yet, so there will be one more post here.
I’ve recently stopped wearing my wig as there seems no need. I’m moving on from the ‘woman with attitude’ shaved look to the Annie Lennox look which I like. This isn’t a very flattering photo but you get the gist.
Someone asked me this morning if this experience has changed my attitude to life and I answered that it hasn’t. It had already changed. Meeting Neil did that. (driving our old cars to The Gambia in January 2010) And we have lived our lives to the full ever since. During these last 8 years we’ve enjoyed some pretty big adventures which most of you know about. We’ve loved our friends, our families, our travels, our hobbies and interests, and now our shared home. We had the most amazing wedding in Culmstock last September and all this Deirdre episode has done is give us a rather quiet winter and the assurance of how much we mean to each other.
Neil promised me a calm and quiet cruise at the end of the treatment, but no need! We went skiing instead. Ha ha. Such has been the rate of my recovery. I’m a very, very lucky lady.
We’ve had the most uplifting and unconditional support from everyone who knows us, and even those who don’t – friends, family, colleagues, choir, locals and friends from all over the world. It’s been a journey, but the challenge was never too great. We felt a genuine positivity throughout. We’re about to book tickets for a few months in Malaysia, Australia and New Zealand and have 6 weeks immediately ahead of us driving the camper van around France and Spain.
Thanks everyone for your support. We’ll never forget your encouragement and love.
Ceri and Neil
Hair 2mm long!
I have to say I feel great, so since my recovery is going so well, I thought I’d add the progress of my hair.
A while ago, my hair had become so horribly thin and wispy, that I decided to go for the Yul Brynner look and shave it all off. It looked so much better.
It’s now been 2 months since my last chemotherapy treatment and I can see my hair starting to return. It’s about 2mm long today and looks and feels like soft baby hair, not the chemo frizz I was expecting. I think it’s the same strawberry blonde colour I had before which will lighten in the sun. I was dreading it might be grey but we think not. Here I am, wig free, enjoying breakfast in our camper van last week.
Also, I’m also very pleased to say that my sense taste has come back completely and, apart from loving my food, I’m enjoying wine and G&Ts again. Yay!!!
…although that was an apple juice in the photo above as I’ve chosen to drink ‘responsibly’! Ha ha. I hope it lasts.
It’s been great cycling again with Neil. My electric bike has been worth it’s weight in gold (and it’s very heavy!) as it helps me cycle up hills and keep up with ‘Wiggins’ Neil.
I’ll have a CT scan in early May but no date has been set yet so we’re busy catching up on our travels. Recently we took our camper van and bikes around beautiful areas of Suffolk and Norfolk. It’s been wonderful getting our lives back to normal.
For the sake of honesty however, I must confess that I’ve had some emotionally low times during the last month, the first since this all started in June last year. Now that all my treatment has ended, I want to continue life exactly as I did before, but I can’t. I know it’s early days, but it’s so frustrating getting tired easily and occasionally getting stomach cramps after I eat. The surgeon told us recently that my recovery is in the top 5% of patients so, really, I have absolutely nothing to be frustrated about and a heck of a lot to be thankful for.
Anyway, our recent camper van trip has wiped all those blues away. I feel great again and ready to roll up my sleeves and start gardening. We all have our ups and downs.
We went to a lovely wedding in Pembroke College, Cambridge on Easter Saturday, where the bride was caught up in the traffic due to Stephen Hawkins’ funeral ending up 30 minutes late. We explored as much of Suffolk and Norfolk as we could fit in, including Constable country, miles of coast line, cycling, canoeing on the Norfolk Broads and catching up with friends and family. We had such a great time.
I’m very used to my wig now which I wear most of the time. I need something on my head during this cold weather and as soon as the weather gets warmer, I’ll probably forget the wig and embrace my new funky cropped hair look. Maybe I’ll dye it bright pink and get piercings in my nose!!! Watch this space!
Skiing
Skiing was fantastic!!! Amazing!!! Exhilarating!! Happy!! Exciting!! Stunning scenery!!
4 months post oesophagectomy and 4 weeks since my last chemotherapy, I really wasn’t sure if I’d be fit enough to ski at all, but packed my ski boots and all my ski clobber just in case. I also packed my walking boots to join the walking group if skiing was too much for me. We left home at 3.30am to get to Bristol to catch the flight, so I wasn’t the only tired person to arrive at Canazei in the Italian Dolomites, Deidre or no Deirdre!
On arrival, I optimistically joined everyone renting skis. It was great meeting up with our ski buddies from previous trips, plus Devon friends Neil and I had introduced to the group, and my dear friends Jayne and Lisa who flew in from Gatwick. I love my life with Neil in Devon and I’m so lucky to have made so many good friends here over the last 7 years, but I do miss my old friends so it was great seeing Lisa and Jayne mix so easily with everyone. And they are great skiers!
The first morning I decided to ski as I hate missing out on anything. I was so surprised as skiing was so easy and it felt absolutely WONDERFUL!!! All I had to do was stand on the skis and let gravity do the work. I have always loved skiing and it felt like Deidre had never happened. With Neil, Lisa, Jayne and others, we whizzed around the slopes and even threw in a few black runs for good measure. I ended up skiing all 6 days, taking just 1 afternoon off mid week as I listened to my body telling me to rest.
As Devon and most of Britain ground to a halt, enduring the biggest snow falls for many years, we skied the Italian slopes enjoying blue skies, chilly mountain air, dramatic Dolomite scenery, vin brule (hot wine), good friends and good Italian food. Occasionally I skipped meals in the hotel as my tummy is a bit random as to whether it decides to be hungry or not. I still have the odd half hour or so when I can feel quite sick and need to lie down and we haven’t figured out what triggers this. But it’s early days after such a big operation so I’m not worried at all about it.
I got quite out of breath polling the flat sections between skiing, so I’m guessing the lung they deflated isn’t functioning quite at 100% yet. Gentle exercise will be the best way to recover to full fitness. With my new electric bike, I can join Neil and friends cycling through our pretty Devon country lanes, or enjoy the many picturesque walking routes which start right from our back door. We have quite a few trips planned already, which always includes some exercise or another, so 2018 with Neil is going to be a GREAT year!!!
I’m a very, very lucky lady.
No chemo ever again !
What an amazing day!
I’ll start with the good news in that my chemotherapy was cancelled forever and I need no more sessions. It’s wonderful news, but it has not exactly been a straightforward day.
It started with a blood test at 10.30, of which all were ok except my liver function test which they were still waiting for. It looked good for chemo so they booked me in and I wrote the very upbeat blog below.
Fortunately I didn’t publish it, as an hour later the nurse came back with the bad news that my liver ALT test results were too high and that chemo was cancelled. I was to have a liver scan instead. What a huge disappointment that was!
I’d had this problem with my first chemo and my liver scan was absolutely fine so no one was worried, just disappointed that the chemo was cancelled yet again, especially after the earlier elation.
Just after that, Neil went to make a coffee in the corridor and bumped into Liz TOY my oncologist. She hadn’t seen the message that my liver function test had failed and immediately said to Neil “GO SKIIING INSTEAD! Skip the chemo!!! “ Then dashed off. No wonder she’s so slim, she’s so busy she’s always dashing. I love her.
So Neil came back into the ward to give me the good news. Fantastic news actually. What a roller coaster morning it had been, from elation to resignation and back to elation.
Liz came back and explained that they weren’t sure about giving me this final dose anyway as I’d struggled so much with the previous sessions. Because I’d had radiotherapy, I was more susceptible to problems with the chemotherapy so they had planned to give me just a 50% dose anyway. In a way I think she was equally relieved for me that it was all over. I gave her such a great big teary hug.
After she left, both Neil and I became quite emotional. This treatment has run our lives since July and suddenly it’s all over. It’s like finishing finals at uni. The relief is immense but what does one do next as it was so unexpected? The nurse even came over and removed my PICC line. It really is over and it’s all rather hard to take in.
Eve popped over too for great big hugs all round. Lots of them! She took the photo of me without the wig and you can see I didn’t loose all my hair. It’s mostly all gone from the back from sleeping, rather like a baby’s new hair but there’s enough at the front to look like I’ve simply got extremely thin hair.
I’ll have an appointment with Liz Toy early next May and a further appointment with the surgeon following that.
It snowed slightly this morning which was lovely, then we drove home from the hospital under blue skies and decided to walk up the beacon. WE DID IT TOO!!!! I felt fine. Wonderful in fact. Maybe the steroids I’ve been taking in preparation for the chemotherapy got me up there. Who knows?
I tasted the wine Neil brought up to celebrate, but I’m not quite ready to enjoy wine properly just yet. I don’t need any more steroids either so my energy will decrease for a while. Actually I’m expecting to feel pretty tired for a while. But now I’m 2 weeks ahead of schedule, I may well be enjoying the Italian wines in the Dolomites. Who knows? I might even ski if I can get fit, but gently as Liz Toy suggested.
I thoroughly enjoy a roast beef Sunday lunch yesterday so my appetite is almost back to normal and no more chemo sessions to knock me back. I still can’t believe it as I type this.
What an amazing day and to end it with a walk up Culmstock beacon was just perfect.
Here are the previous blogs I wrote but didn’t publish earlier today:-
Blog 1:
Last chemo on!!!!
Yay! I’ve just had the news. My blood test passed and Neil and I are waiting together in Cherrybrook ward for my last chemo. I was so tired last week I did wonder whether I’d have the energy to celebrate, but I’m on steroids and almost jumping about! We’ve been watching the winter olympics while waiting so the time has past most enjoyably.
We had a busy Saturday. Jonny and Els and her Dutch sister and brother in law popped over Saturday morning, then we went to watch Exeter Chiefs play Worcester with David and Anita in the photo (Chiefs lost 😟) then dashed home to watch England beat Wales as well 😟. Wales plays Ireland on my birthday on 24th Feb so Neil and I will sit on different sofas that day! Neil spoke Welsh to open his speech at our wedding and the Welsh for ‘sofa’ is ‘sofa‘ which he enunciated with a strong Welsh accent, being the only word he understood. We were all in hysterics. What a happy day that was….. with many many many more to come. I’m soooooo excited!!!
We’re already full of plans. We’ll spend Xmas with Neil’s sons and families in northern NSW, Australia then head of to New Zealand. We’ve got lots more local European trips planned too beforehand. Travel insurance will be my next project. All advice will be most welcome.
Anyway, back to today. After chemo they’ll attach my last set of 24 hour drugs to my PICC line and I’ll return tomorrow to have the pump and the PICC line removed. Finally I can shower and bathe without the limbo gadget to wear on my arm protecting from infection the tube which enters my arm and finishes near my heart.
The long road to recovery will commence. I can’t wait for my hair to grow as that wig is fun but itchy. But once these steroids wear off, my final recovery will start with great tiredness and sickness.
Blog 2:-
Alas no chemo again
Boo hoo 😟. My usual blood tests passed but this time my liver function ALT test failed. Neil and I are waiting together in Cherrybrook ward for a liver scan at 2.20. I’ve had this before and the scan was absolutely fine. The ALT can go up with steroids so it’s all a mystery. But it means definitely no chemo today and we’ll try later in the week. I’ll update this when I know the date for my next blood test.
——– ~~~~~ ——-
THE END
But if you like I’ll update this now and again to let you know how I’m getting on?
Next try: Monday
No chemo
As suspected based on previous tests, my white blood cell count is too low so I won’t be receiving chemotherapy tomorrow. It’s such a shame as we are booked to go skiing in the Dolomites in Italy on the 25th February and the delayed chemo will definitely affect my fitness to ski. I do enjoy my black slopes with the guys, but my legs just aren’t very strong at the moment for even the easy slopes. Maybe I could pinch a sick back from the plane and tie it around my neck skiing… ha ha! No…. I won’t ski, but I can join the walking group instead. It won’t be as exhilarating, but the walkers are great fun, mostly ex skiers, and it will be a wonderful way to improve my fitness. There’s also a fabulous swimming pool in the resort and some rather nice shops, so if have absolutely no doubt that I’ll have a great holiday with my super keen new skier, Neil. He improves dramatically every year, so I’ll be testing him in following ski trips!
On the plus side, I’ll be well enough this week to sew new curtains for our guest room. I ate all 3 delicious courses at our friends’ lunch in Topsham last Sunday. There’s a positive to every situation as I always feel pretty well just before chemotherapy, so I have a good week ahead of me. The last session will still be the last session, no matter when it happens, and the relief and celebration of it being over will be just as much fun.
I don’t know when my next blood test will be yet as I’ve only just heard this news. The consultant oncologist will call me tomorrow morning with a revised plan. We are hoping it might be early next week due to our trip, but if it’s Thursday again, then so be it. I’ll update this blog tomorrow when I hear.
Recovering after a tough week
I’ve just watched Wales thrash Scotland at rugby, so, much as I love Scotland, I’m feeling very buoyant! We’ve just had such a great 2 days. My dear school friend Pam (obviously another Wales supporter) has been our guest. We visited Beer in the glorious but rare Friday sunshine, watching Neil swim for his Polar Bear club.
He swims 2 days a month in the sea without a wet suit. Some days have been freezing and rough, but Friday the sea was calm, the sun shone and the fishermen preparing their boats joked around as Neil stripped off. They thought he was mad, but Neil loved his swim. Beer is such a beautiful fishing village with some great art galleries. Later, we had a warm welcome from our friends back at our pub in Culmstock. We really miss it and it was sooooo tempting to stay and catch up with everyone, but I still need to steer clear of crowded places so we were sensible and moved on to the restaurant. It’s just a few weeks left until we can join them all again.
Anyway, despite feeling good now, I’ve had a difficult week and postponed quite a few meetings with friends and choir. Each chemo session leaves me feeling worse than the previous and the time seems to drag very slowly. It was so great having Cara to stay last weekend and we did all manage to see the Culmstock panto, which was the best ever. We sat quietly near the back staying away from the crowd and there were times when I contemplated borrowing a pint glass to throw up into, but it never came to that. We laughed throughout, despite my nausea. Cara was such lovely calm company during our quieter weekend.
Food and drink still taste awful and I get no pleasure from eating, but I am eating enough to maintain my weight. I googled when my sense of taste might return, which could start as early as 2 weeks after my last chemo. Everyone is different. One lady’s story made me smile. She commented that when her taste returned, she loved her food so much that she quickly put on all the weight she’d lost during chemo and more! I think I’ll be the same as the brief moments when I can enjoy food, I’m ravenous.
I’m wearing my wig a little more often, but I still have just enough hair to form a fringe around my face, so I’m not totally bald and I rather like my new short hair cut so I’ll probably keep it short when it grows back.
So I continue with these good days as we approach the next chemo and I hope that the blood test this Wednesday will allow me to go ahead with my final chemo on Thursday. I wont be too disappointed if it fails as all the others have, so I’m prepared for a week’s delay. As soon as I hear I’ll update the blog. We’re off to Topsham next for lunch with friends and I feel absolutely fine.
Penultimate chemo
Hurray! Chemo is on later today!! I had a blood test in Exeter yesterday and we drove there again this morning for the results and a meeting with the oncologist. So I’ll return this afternoon for 5 hours of chemo, then the pump will be fitted into my PICC line and I’ll have to return tomorrow evening to have it removed.
Neil and I had such a lovely time with Des, Eve and little Soloman in Centerparcs earlier this week and rather sadly we had to leave half way through our booking to have my blood test. Neil swam and swam with them in the huge aqua pool which was perfect for toddlers. All of them whizzed down the slides and Solomon LOVED it. His cousin Jessica in Australia is such a strong swimmer at 4 years old, so Sollie has 2 years to catch up.
Unfortunately I left my arm protection for my PICC line behind so didn’t chance swimming for risk of infection, but Neil and I enjoyed cycling around the park seeing all the facilities. My new electric bike worked brilliantly up the hills as Neil pedalled hard, and we are really looking forward to more cycle rides now I’m out and about more. I am still often very tired, but we manage it well with plenty of rest and our lovely decorator still painting away upstairs.
Cara’s coming to stay this weekend which I’m really looking forward to. We’re taking her to the Culmstock Panto Saturday night, which will be a totally new experience for her as it’s aimed high above the children heads and directly into adult humour! Its usually very, very funny playing on our local village characters.
So after today, just one more treatment to go. I’m booked in for a blood test on 7th Feb and final chemo on the 8th Feb. But since I’ve always failed the 2 weekly blood test chemo might well be delayed, but just 1 last time. Yay!!
Alas no chemo today
We were so surprised to find out that my neutrophils and white blood cell counts were really low after my blood test yesterday. All was extremely well last week and I feel fine. I’m eating well and gaining weight, but they’ve delayed chemo until next Thursday 25th January. I guess my body simply doesn’t like chemotherapy and there’s nothing I can do about it except wait for the blood counts to recover.
I’m so have to be very careful about going to crowded places as I can easily catch bugs from people next to me. So no hugging at choir, or rugby, or anywhere. If you don’t feel well, 2m is a safe distance from me.
At home Neil’s been busy working as a locum and I’m loving getting the bedrooms painted, choosing curtains with Neil and drilling holes in walls for new curtain rails. Once upstairs is finished we can start on the garden as it was neglected all last year due to the wedding and ‘stuff’.
I feel fine about these delays. It just comes with the territory and there’s no point getting upset or anything. There are far too many good things happening in our lives and I’m just about to pick up the electric drill again. I love getting the jobs done. My next update will be next Wednesday after my next blood test. Fingers crossed as I really want to get on with it.
Ceri and Neil's blogs (including Ceri's oesophagectomy) 