I was due chemotherapy today, but I’ve had a reprieve. Yay! I’m quite weak and barely eating, but the good news is that my blood tests were OK. Since I’ve had such a rough time, Dr Toy did give us the option not to continue with chemotherapy as we have no idea if there is any cancer left. But since we’ve started, it was an easy decision to continue when I feel better, otherwise these last two and half weeks were for nothing. I’m booked in for my next chemo on 4th Jan.

My hair is falling out at an alarming rate and I feel strangely accepting of it. It’s getting absolutely everywhere, so I’ve decided to have it cut really short. I haven’t booked anything yet but I’ll post a photo when it happens.

We’ve had a little saga since releasing the doves on Christmas Day. The weather was awful and 3 doves immediately flew back to their original home! Boxing Day morning we counted just 4 in the dovecote and the following morning there were none! Poor Neil had worked so hard, preparing the dovecote, feeding them, sitting with them, cooing to them for 8 weeks. It was a sad morning as he drove off to work.

The same sunny day, Eve, Solomon, Duke(dog), Tessa and Joe all went for a walk up to the beacon and looked down onto our house. To their happy surprise they saw 8 doves resting on our roof. We ran outside to see them. They are absolutely beautiful, glistening in the sunlight on these frosty sunny days as they swoop from our roof around the garden. One is certainly missing, but the remaining 8 seem very happy flying close by. They never seem out of sight these days, so we hope they can deal with predators like buzzards and foxes. Fingers crossed they remain safe with us and are here to stay. We love them.

We’ve all had such a great Christmas. Tessa, Joe, Marc and Sarah left Tuesday and both couples had long tedious onward journeys. Cara stayed on and came to see the consultant this morning, then we put her on a train back to London.

So now we are team Ceri and Neil again, facing the future together.

I’m home for Christmas!!!! It’s a little precarious and I have to go straight back for blood tests on Boxing Day, but that’s fine. I’m still trying hard to keep my fluids up and even ate some bites of food. Neil and the girls have stocked the fridge with all kinds of goodies. The presents are lying under the pretty Xmas trees and we’re all looking forward to having a great day. Happy Christmas everyone.

Just a quick update. I’m back in hospital for a couple of nights. I’m finding it so hard to eat or drink that my blood pressure is very low, my diarrhoea is back and my temperature very high as I’ve picked up an infection. It’s the best place for me so no complaints. Marc and Sarah, Cara, Tessa and Joe all arrive tomorrow to take over Xmas with Eve, Des and little Solomon in the sidelines helping too. I feel like the Queen of Sheba!! Ha ha. I will be home for Xmas.

Here’s the tough blog. The good news is that the second pump fitted last Thursday worked. I woke up Friday morning to see that the chemicals had been released into my system through the night. But the side effects are really kicking in now. I felt really ill all Friday with bad diarrhoea so we didn’t go to the doctor’s Xmas party as planned. I simply wasn’t well enough.

However I was determined to see my niece Jane get married in Staffordshire on Saturday, and we did! It was a lovely wedding. Neil drove the whole way and the roads were empty. My other determined plan was to spend Sunday with Cara in London as it was her 30th birthday, so Neil drove us down to Islington after the wedding speeches and we arrived at Cara and Andrew’s canal side flat at about 10.30pm. Sunday was perfect, spending it with Cara and Andrew, and then we drove home to Devon. What a happy weekend.

But I’m struggling. My mouth is very sore and eating makes me feel sick. My weight has plummeted and I’m trying really hard to force myself to eat anything, simply to keep my weight up. It’s such a shame as all that wonderful progress I made recovering from the operation seems to be turning backwards on me. If I can’t get decent nutrition into me, my body will deteriorate, which is what I feel is happening. I can barely walk half a mile now as I’m quite weak. And with only half a stomach, the problem is much harder to deal with that other chemotherapy patients. It’s certainly a challenge!

Strangely I still feel quite OK. I guess because the process has started and I have only 3 more chemo sessions left. I’m looking forward to Xmas with family and no more big events to attend. I’ve decorated 2 Xmas trees today, so I’m really tired but content that it’s done. Next I have to figure out what I can eat for supper. I tried my cottage pie lunch time and ended up with diarrhoea, so I’m a bit stuck. I called the dietician in the hospital who’ll get back to me tomorrow. I’ve been googling and have printed out various meal ideas for me to refer to. I’m really hoping that my body will adjust a little and things will get easier. Someone mentioned that the first chemo is the worst. I hope so !!!! My hair hasn’t started falling out yet so that’s good news, although I know it will.

So that’s my update. I’ve promised to be completely honest, and I don’t foresee much change for a while. My next chemo session is straight after Xmas, so I’ll get on with trying to eat what I can and enjoy the Xmas festivities, even if it’s simply sitting in front of our cosy log burner watching the TV with my adorable husband. That’s definitely good enough for me.

Hmmm! The good news is that my ALT reading was 42 so I had my chemotherapy yesterday. After the 5 hours of the usual chemotherapy they fitted the 24 hour device to administer the rest of the chemo through my PICC line. It was 6 pm by the time I left and I was the last person in the ward for the last hour. My nurse joked that she’d leave the keys with me so that I could lock up before going home.

At home I was fine for a while and I’m fine now. But I did experience really bad stomach pains last night, then diarrhoea during the night which seemed to resolve my tummy problems. My fingertips tingle slightly but only when they are cold and I have a slight sore throat, but these are expected side effects and certainly no problem.

However the device they fitted hasn’t worked so no drugs have gone into my system over the last 20 hours. I’m sitting here in the Cherrybrook cancer ward in Exeter RD&E waiting to find out what will happen next. It’s so frustrating having to drive to Exeter again spending hours in hospital waiting. The Xmas lights and decorations still sit in their boxes at home as I’m either too tired or too busy to hang them and Neil’s been working hard. But all I can do is wait here until Dr Toy decides what to do about the failed devices and go with the flow. She must be frustrated too.

I’ve just met a lovely chap called Keith next to me who has had exactly the same problem with his device. None of the staff know why these devices don’t work or even how they work.

In the end, the nurses disconnected them and Keith and I are having to return tomorrow. They will be set up with new medication and fitted again. These chemo meds cost a fortune so I hope the NHS can claim this back from the company supplying the devices.

But more than that, I hope it works tomorrow as I want my chemotherapy. At least I don’t have to sleep with it tonight although it didn’t really bother last night. I barely noticed the long tiny tube which came out of my arm then under the pillow to the device on the other side of the pillow. I could toss and turn as much as I liked.

It’s a 5” diameter doughnut shaped clear hard plastic device with the meds in a clear plastic bag inside. I can see the bag decrease in size as the meds are administered (or not which is how I realised it wasn’t working). During the day I keep it in a black bum bug around my waist under a floppy jumper, so that too was fine.

On my way home I popped in to see Wendy who’s daughter Sophie got married on Saturday. It was such a great wedding and we had a lovely post wedding catch up, so all in all I’m pretty fine.

Tomorrow is another day! Tingly fingers crossed!!

Wow! What a concert it was!!! Just as we promised, everyone loved it, audience and performers alike. We had such huge applause for Bohemian Rhapsody and Handel’s Hallelujah chorus. I used to prance about my university room to Bohemian Rhapsody after Mum passed away in an attempt to feel better, and I’d always dreamed of singing the Hallelujah chorus in a choir, but as an average singer, I never ever thought this dream would come true. Thank you Alan Boxer for making all this happen at Voiceworx ( http://www.voiceworx.org). From a group of people who have never auditioned, you have transformed us into a real choir loving the enthusiastic applause we receive. Who needs chemotherapy when our mind is so happy? I’m convinced such uplifting singing has a huge healing effect on one’s body. All my usual aches and pains disappeared for days.

However, it does seem as though my body needs to put me in my place occasionally. Since the surgery I’ve suffered from ‘dumping’ syndrome. I had this quite a lot when I first came home from hospital and Neil used to gently walk me round and round the house waiting for it to pass. My stomach is so small now that food passes too quickly through it. In particular with sweet foods, sugar ends up in my small intestine far too quickly. This raises my blood glucose levels and causes my pancreas to increase its release of insulin. This in turn causes a rapid drop in my blood glucose levels (hypoglycemia) and I end up with really bad tummy pains feeling generally ill for an hour or so. It’s quite common in people who have had my surgery, and also obese patients who have had bariatric surgery, but I haven’t had it for a while so I’ve been getting more adventurous with my eating. I haven’t liquidised food for ages now.

On Friday, I felt so good that the day was going well. I was excited about the concert and our guests staying, I’d finished cooking for 10 people, and I enjoyed a lamb casserole for lunch. So I decided to try one of Mr Kipling’s exceedingly good Cherry Bakewells to celebrate! Ha! What a bad idea that was! It was absolutely delicious, until half an hour later when the tummy pains set in. I recognise them well and nothing whatsoever seems to help. Rather than sit at home alone in pain (Neil was working), I decided to walk it off in the country lanes surrounding our house. Thank heavens no horse riders passed me by as I must have sounded most odd….step…groan…step….groan, but the cool fresh air felt good against my clammy face. After an hour it passed (and neighbours Xmas cards delivered), our guests arrived and we had such a wonderful evening. I’ll hang fire on the cherry bakewells for a while and stick to just 2 of my favourite Ferrero Rocher chocolates for dessert. It’s just a matter of time and trial and error until I can eat normally again.

Next weekend is even busier, so we’ll just have to see how my body reacts to chemotherapy on Tuesday. Onward and upward as Mum always used to say!!

In a small way this delay is about convenience. I drove to Exeter early this morning for my blood test at 9. My liver enzyme ALT reading was 110 which was still a little high, but much much lower than the last reading of 382, and I could have gone ahead with chemo today. The trouble was that I’d have had to stay on in hospital all afternoon for treatment which takes 5 hours, and when that had finished they’d fit the chemo cassette early this evening, and I’d have missed the concert final rehearsal. And then I’d have to return to Exeter 24 hours later, i.e. tomorrow evening, to have the cassette removed, which would have meant I’d have missed the concert altogether (and I hadn’t even mentioned Sophie’s wedding on Saturday!). So Dr Toy suggested that we have a lovely weekend, enjoy singing in the concert, have another blood test on Monday and start the chemo on Tuesday. That would also give my liver enzymes a chance to fall right down to normal levels.

Neil and I are really happy with this (he’s singing a solo!). We are both looking forward to singing tomorrow evening, having practiced at home to catch up with songs we’d missed during the term, and I feel so great to be singing. The songs are from all genres and it’s going to be such an uplifting evening for singers and audience alike. And even more so for us, with dear friends Simon and Lorene driving down from Bucks to see us sing and stay, and my sister Toni and Dave driving from Dorset, and Neil’s daughter Tessa and Joe driving from Bristol. We have more friends joining us for supper before the concert, and everything has fallen into place.

We can look forward to a wonderful weekend.

Before every chemo, I have a blood test to make sure my body is healthy enough to cope with the chemotherapy.  I had my PICC line fitted this morning which was far less painful and awkward than when I had it done in Plymouth, so I was very relaxed and happy. They took the blood tests through the PICC line which was great as I had no new needles prodding me.

Then I happily drove off to see my dear friend Laurel Keeley who was my talented pottery teacher in Exeter. She’d thrown some beautiful flower vases for the receptions at Oncology and Cherrybrook (the chemo ward). After my previous treatment in these wards, the staff were so great that Neil and I gave them all flowers, but they had no where to stand them. We asked Laurel to throw some pots for them with the wards names written on them so no other wards could pinch them! I wish I’d taken photos of the pots as they are beautiful. Anyway, both departments LOVED them and when I complete my chemo in January, I’ll give them some beautiful flowers to stand in them.

So back I drove into the hospital to receive my chemo, only to be told that my liver function blood test had failed. Bummer!  I have an ALT (a liver enzyme) of 382 and it should be around 0-50 so it’s way off. They asked me if I felt OK and I feel great! (I’d walked 6 miles yesterday up the beacon and far beyond). Had I been in contact with sick people? No. They gave me a liver ultrasound scan which showed my liver as perfectly fine. So we’ve no idea where this has come from.

They had to discharge me and I have to return this Thursday morning at 9am for another blood test. If I pass that, then chemo can start the same day, but 3 days is pretty soon for that high figure to drop so much. They’ll have the results of a virus blood test they did today to see if that’s the problem. I  must admit that quietly I was thinking I’m glad I’m off alcohol as I’d be beating myself up if I’d been enjoying a G&T in the hot tub with Neil in the evenings. I’m such a saint these days!!! Ha ha. But I hope I’m not too saintly over Xmas!

So…… that’s all from me. I’ll update you Thursday evening, but it does look like some delays are afoot. It’s only 6 weeks since my op and the window for successful chemo post op is up to 3 months so there’s plenty of time. And, as always there’s a bright side to everything. No wig at Xmas!!! Yay!!!!

It’s all good, so where do I start? I feel FINE. Last night Neil and I donned our black tie and evening dress to attend the GP and Consultants ball and my progress is surprising everyone. It’s a shame my surgeon wasn’t there to see his success, but he’s Plymouth based and this was for the Exeter area. We had a great time and I had intended to enjoy the first dance with Neil before slipping away, but by 10.30 the desserts hadn’t been served, so we left before the dancing, enjoying the glow of our first proper evening out together. (The first photo is in the pub and the second with our lovely friend Clare)

Before going, we went to our pub for a ‘swift one’. Friday evening at 6pm is a popular time for our Culmstock community to share a beer or 2 (or 3 or 4!) and it was the first time I’d been there in 3 months. It felt wonderful being back with our Culmstock friends and we were both given the warmest welcome. Culmstock is indeed a very special place to live. I’m a pretty cheap date these days not drinking alcohol yet, but it’s just a matter of time, although I did enjoy half a glass of champagne at the ball before it got too warm to finish.

One irritating medical issue is laughter! We saw Paddington 2 this week and Neil laughed all the way through, noticing that I didn’t seem to be laughing at all! It’s just that I can’t laugh heartily yet as my lung hasn’t quite recovered and I end up coughing. It was such a lovely uplifting film and I really was laughing just as much as Neil, but inside and silently!

The Weetabix Test

I had a long chat with my brother yesterday, just back from his second honeymoon (one can never have too many!). Have I tried the 2 Weetabix test yet? I did giggle. With all those letters after his name, surgical papers he’s written, and a title of Professor, he’s still my little brother who has eaten 2 Weetabix for breakfast all his life. He described my stomach as being the size of a large clenched fist which should accommodate 2 Weetabix, so I’ll be testing that soon. I reckon my porridge every morning is about that. I can eat most things now, but still only in tiny portions.

It’s a bit of a juggling act deciding how much exercise to take so as not to burn up too many precious calories. I did have 2 bad days this week, but it was nothing to do with surgery. It was a migraine!! I felt sick and so very tired, and I was beginning to wonder if I was taking a step backwards, but once it had lifted yesterday morning, I actually feel I’ve taken 10 steps forward!

I simply feel so well! Which is just as well as we have 2 weddings to attend in December, a few theatrical productions including the concert we are singing in, plus all its rehearsals, plus lots of carol singing, plus Cara’s 30th birthday in London. And then of course, Christmas where all our families are coming. I am absolutely determined to attend all these events.

Sooooooooo…….next is chemo from Monday to Tuesday with that gadget attached to me pumping it in for 24 hours. I had a blood test a week ago and everything was normal, so whatever I’m eating is doing the trick. I’ve no idea what to expect about how I’ll be with this new chemo, and I hate the idea of losing my hair, but in a weird way I’m looking forward to it. Life is far easier dealing with something than worrying about it beforehand. It’s the final stage of the story. Bring it on!

Later on…. I’ve just passed the Weetabix test!!!

Last Wednesday, Neil and I went for our meeting in Exeter with my oncologist, Dr Liz Toy. She was extremely pleased with my recovery which was good to hear and reiterated that the operation had removed all of Deirdre to the best of anyone’s knowledge.

So…to the next decision! Do we leave it at that, or follow up with 8 weeks of full blast FLOT chemotherapy. Dr Toy was happy to accept our decision either way, as the cancer had most likely gone. But there is no way of knowing absolutely. If even one microscopic cancer cell has wandered off into another part of me, it could lie dormant for a while then divide and appear again. Because of this, Neil and I were already committed to me having further chemotherapy.  If anything comes back in years to come, we’ll know we’ve done absolutely everything we could to prevent it.

But its not a nice chemo. I’ll loose my hair, have sensitive hands and feet, feel the cold badly, and a host of other possible side effects. I’ll have a PICC line inserted into my upper arm for 8 weeks, through which they’ll administer the drugs over a 24 hour period every 2 weeks. Here’s link explaining what it is.

https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemotherapy/picc-lines.html

Every 2 weeks they’ll attach a cassette containing the drugs to the PICC line which has to stay in place for 24 hours, so I’ll come home with a little bag containing the cassette and return the next day to Exeter for them to remove it. I’ll have 4 of these sessions which isn’t too bad.

My first session is Monday, 4th December when they’ll insert the PICC line. I had one in Plymouth so I know whats coming. I must confess I didn’t like it, but once its in its OK. I’ll just keep reminding myself that this is all temporary and I’ll be completely finished by the end of January.

It’s quite funny as I kept asking Dr Toy questions expressing doubt that I was fit enough to start further chemotherapy in 2 weeks. She ended up explaining to us that my recovery was so remarkable that it was probably in the top 5% of oesophageal cancer patients. Ha ha. That shut me up!

Until yesterday I had 4 good days in a row! I walked over 3 miles with Els, up the beacon and beyond then spent the afternoon in the hot tub. Then Els cooked a delicious roast chicken which I ate (tiny portions) without repercussion and went with Neil to a carol singing practice in the evening. The next night we had a Voiceworx choir practice which we loved, so life is slowly getting back to normal. So long as I can rest for an hour before an evening event, then I seem to be fine. Unfortunately yesterday, the good run came to an end as I ate toast and cereal lunchtime and felt terribly unwell for the rest of the day.

Today is a fresh new day and I’m fine again. Neil’s just booked theatre tickets for Saturday afternoon to see The Kite Runner at the Exeter Northcott, and we’re going to visit Tessa in Bristol on Sunday, plus meeting with friends in the week. So long as I follow the eating rules carefully, I’ll be fine. As Dr Toy reminded me. I must be patient! Hmmmm!!!!!