Hi. I’m no superwoman thank heavens. I had a Gastric outlet obstruction so the valve at the bottom of the stomach is not letting food down. They had to put my nasal tube back in which was uncomfortable at first but I’m getting used to it again now. It sucks out the excess fluids from my stomach. So they are planning to do an endoscopic dilatation on Friday to stretch that area a little bit. It might have cleared itself by then but if not that’s what they will do with a little ballon on the end of the scope. My breathing isn’t too great either as it’s feeling a little harder to breathe but nothing dangerous or anything like that. I feel I’m being looked after so very well here that I’m really happy am very to stay on a few days. I was really tired all day today and my breathing isn’t as strong. I’m in no hurry at all. Love to all xxxx
Uncategorized
Escape Plans
All looking good for return to Tapscott House Thursday or Friday. Ceri met the consultant again yesterday afternoon who was very pleased with everything. Every day bits of tubing are discarded. Ceri can drink fluids freely and she and I walked up and down the ward four times yesterday with me holding bits of tubing. She is asking me to bring down shampoo and conditioner today so all sounding good. I should put a plug in here for Derriford Hospital. They have been fantastic . I am sure lots of us would agree that you might wait a long time in A and E with a poorly finger but when you need the cavalry to come they do. Always professional always time to talk, confident staff who know what they are doing. Just don’t sit on the bed ! Although I did yesterday without a problem. I think thats probably because Ceri is really so much better in every way.The oxygen is now off too.
Mum’s Out of Office Reply: Thank you!
Dear wonderful friends,
Mum continues to recover brilliantly. Today, she picked up her phone for the first time and was blown away by the amount of messages of love and support she’s receiving. She actually felt quite teary at how lucky and loved she felt. What better medicine!
So thank you to everyone for all your blog posts comments, text messages, emails, calls and thoughts. Mum is receiving them ALL.
She’s asked us to write this blog post to let you know she apologises for not being able to reply. She wants to reply to each and every one, but she’s being ordered to sleep. So please know that even if you don’t get a reply, she has received your messages and thanks you hugely. They really really mean a lot to her (and us too!).
Love all round!
xxxx
Walk on the Wild side
Neil here
Well a walk on Crownhill ward . Ceri walked up and down the ward yesterday with lots of wires and drains and managed it all very well. Her most pressing question was ‘how do I look from the back ?”The treatment she has had has been fantastic.I managed to be ticked off for sitting on the bed as was her brother David Lloyd for doing the same thing. It was lovely to share the weekend with Cara Andrew Marc and Sarah. Toni visited today as well. She met the surgeon again today who was very pleased with her progress . She had a cup of tea this afternoon as well.
Update post op from Marc & Cara
“Ahhhh… what a lovely day” were some of Mum’s first words as they wheeled her from the HDU (high dependency unit) to her recovery ward.
So family and friends, we are pleased to say… Mum is doing really well!
An absolute inspiration to us all, Mum was a bundle of energy and giggles as we waited to get her into surgery. Posing with her surgical socks, not showing any signs of worry for what was ahead. Just sheer determination to rid her body of Deirdre, whilst always holding her smile, and raising others. This mindset continued, after 8 hours under the knife mum reappeared with many tubes, and greeted us with a rather loud “I ammmm doooiiingg fiiiinee!!” bellowing through the oxygen masks.
From the two Mum quotes we’ve shared so far in this blog post, you might be able to tell…morphine is mum’s new best friend this weekend. And we’re thankful! As she has a long few days ahead of her now whilst her body heals and her dependency on the tubes lessens.
Yesterday was a long day of waiting, but in true Mum style she sent us (Neil, Marc, Cara and Sarah) off to the Plymouth Gin distillery and out for lunch. She would have hated us waiting in the hospital the whole time. Despite all our minds thinking of mum all afternoon as you would expect, we ended up having a lovely afternoon together.
And boy was it a long day. She went into surgery around 9am, escorted by a handsome young healthcare assistant (you can tell Cara wrote this bit) and into the hands of an accomplished surgeon. We knew she was in great hands. We were extremely relieved she was actually going to have the surgery that day as 30 minutes before we were told there was a strong chance of not enough beds. But there were, phew!
We all got back to the hospital around 6pm, ordered our cups of tea and waited for Grant, mum’s surgeon, to call. The wait was only half a cup of tea. Mum was out of surgery!! We knew there would be an hour or so before we’d be reunited, but we wanted to be there to greet our mum to her new temporary home, Crownhill Ward, where she will be for about a week.
It was here where we first saw mum, as mentioned before. Tears were shed. But tears of absolute relief and happiness. The surgery went according to plan. A few intercostal pains, but that’s expected considering the severity of the operation. Our lovely mother, your lovely wife, daughter, sister, auntie, step mother, cousin, friend, is on the mend!! And thank you for all your lovely messages, we’ve shared them all with her.
We’ll leave you with a lovely poem Neil had written yesterday, and shared with us. Neil has been nothing short of amazing. They make the perfect couple.
Getting All The Dominoes In Line
And so she goes
Spreadsheet ready
Card sent to Dot
Amnesty adding up
All dominoes in line
And so she goes
Neil will cope
But will he put out the bins
Els to phone
All dominoes in line
And so she goes
Just thinking of others
Never thoughts for self
Just finished the blog
All dominoes in line
And so she goes
Headlong to Plymouth
With no care in the world
Such courage to see
If ever there were spirit
We should bottle it so
Written 05.20 day before op
Neil
18th October
We are just returning on the train from Ilkley in Yorkshire after 4 enjoyable days with Neil’s sister Joy and Peter. I’ve always wanted to visit Castle Howard, so we did and there were hardly any visitors there. The house is absolutely stunning, then we wandered through the beautiful gardens in a rather strange light. The sun was amber as it struggled to penetrate the Saharan dust blown high into the atmosphere by the remnants of hurricane Ophelia. It was a wonderful day and another ticked off my bucket list. Next day we caught up with friends for lunch and visited Hockney’s work in Saltaire. I have to confess I was so tired by the end that I slept almost 14 hours yesterday evening and last night. I forget sometimes that I’m not quite running on all cylinders.
After quite a lot of researching the internet, we opted for laparoscopic surgery. Since surgeons in general can’t decide which is better, hence the ROMIO study, then I might as well go with the minimal invasion method, and deal with any complications as they arise. Since it’s our decision, I’ll accept whatever comes my way. I know I’m in safe hands as Grant Sanders has performed both surgeries many times and I couldn’t ask for more.
I had my last required blood test in Ilkley on Tuesday which showed my neutrophils down to 1.08. They should be 1.5 but Mr Sanders’ specialist nurse Marilyn assured us that he explained he’s happy to go ahead with the surgery so long as they stay above 1.0. Phew. I’m geared up and ready to deal deathly blows to the dastardly, dreaded Deirdre. For some reason, I’m not nervous at all. I just want it done. I’ll be under a general all day (good job I’m not military!) and won’t come round until well into Friday evening. I’ll ask Neil and/or Cara/Marc to give an update here on Saturday.
Neil is intending to take Cara, Marc and Sarah on a short tour to the Plymouth Gin distillery while I’m under. It’s a perfect way to spend the afternoon and nurse Marilyn agreed absolutely. There’s nothing they can do all day except wait. If it were Neil having surgery, I’d definitely be on the gin!!
Thursday evening we’ll all check into the Lodge (http://www.heartswelllodge.co.uk ) at Derresford hospital which looks lovely. It’s just for patients and relatives. Seeing as I’m supposed to rest between now and Friday morning to get my neutrophils up, I’ll end here.
Thanks to everyone who has sent encouraging emails. I’m so sorry I haven’t been able to reply to all, but its great having so much encouragement from so many friends. Thank you.
See you on the other side!!!!
The operation
Anyway, my lungs and heart performed well so I’m fit for surgery.
So in Plymouth, I had the usual blood tests and met my new nurses who were absolutely lovely, and the best part was meeting my surgeon Mr Grant Sanders. We’d been told a couple of weeks earlier that Mr Richard Berresford was unavailable on 20th October but I forgot to update this. What’s great about our NHS system is that we have certain hospitals designated to become specialist centres for certain types of surgery. Plymouth has become the centre for the Upper GI operations which is why all oesophagectomies are performed there. I’m sure Exeter, which is much closer, is a specialist hospital for other types of surgery. It’s a great system as if one specialist surgeon is away for any reason, then any one of that team of surgeons is equally qualified to perform that operation. Neil and I were extremely impressed meeting Grant Sanders and liked him very much.
He explained patiently and in detail about what my surgery would entail. Obviously it will be under general anaesthetic as its a big operation. Basically they’ll create a tube from the top part of my stomach which will replace my oesophagus, then cut out my oesophagus, and join the new tube to my throat.
First they need to free up my stomach, so they’ll either make a 10” cut under my chest for open surgery, or make 5 or 6 smaller cuts in my tummy front for laparoscopic surgery, or, I could become a trial patient in a study called the R.O.M.I.O. study, where I won’t know which method they perform on me, open or laparoscopic. They’ll monitor the recoveries of everyone in the trial to try to find out if one method is better than the other. Currently, both surgeries come with equal risk, but different risks, so Neil and I are discussing what to do.
Once the front part of surgery is done, then they’ll roll me on my side and make a 12” cut on my back running down behind my arm, and enter my body through my ribs to take out my cancerous oesophagus and replace it by pulling up the section cut from of my stomach they’ve made into a tube.
The operation takes between 7 and 8 hours. When I wake up, I’ll have tubes everywhere for a while as none of my digestive system will be working properly. Then as my body learns to pass food successfully through my system, slowly the relevant tubes will be removed until I’m free of them all. I should be in hospital in Plymouth for about 7 days, assuming there are no complications, then I can come home.
They’ve given me loads of literature which I haven’t read properly yet, but it’s good stuff. I love understanding everything, so I have leaflets on the pre-op stage, the operation itself, then the post-op phase. Most patients under estimate the severity of this surgery, so I’m hoping knowledge will be my armour. The specialist nurses assigned to me are very experienced. The lovely one we met yesterday referred to her surgeons as her ‘boys’. Having a brother with the same job, I could see what she means.
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I just admit I was exhausted yesterday in Plymouth during the whole process. But not due to worry, as one might reasonably imagine, but due lack of sleep because of singing! We had such a great choir practice the night before and ended singing Labi Siffre’s ‘Something inside so strong’. It sounds so powerful as part of a whole choir singing it. I used to sing it in the Rock Choir when I lived in Fleet. Maybe the phrase ‘Something inside so strong’ means a lot to me at the moment, I don’t know, as the rest of the lyrics don’t apply these days, but for whatever reason, every time I put my head on the pillow Monday night, determined to empty my brain of everything, I’d realise I was still singing it over and over. I reckon I had an hours sleep if at all!!
Monday was our last choir session before surgery as Neil and I are going to Yorkshire early next week, so next time I go, Deirdre will all be behind me. How amazing it that?
Last night I slept like a baby. Some dear friends joined me in my beacon walk today as Neil was at work. I really do feel back to normal these days as we walked and walked and talked the whole way, ending up back home for coffee and cake. We could all have walked miles further, but time was limited. I know that when I can do this post surgery, I’ll feel recovered (another goal). I’m eating almost everything these days and drinking my usual cups of tea and glasses of water. I seem to be off coffee and alcohol which is interesting. Maybe my body is fed up of drugs of all kinds including caffeine and alcohol. Who knows? And who cares anyway? I feel great. Thank you ladies for joining me today.
Another goal!
Singing uplifts everyone! Neil and I went to our local community choir rehearsal, Voiceworx, last night, as we do every Monday evening in Kentisbeare village hall. I’m not the best of singers, but it’s such a great mix of abilities that I’m never embarrassed and my singing is improving! Our choir master, Alan Boxer, is our very own Gareth Mallone. We’re so lucky. He’s a talented musician, motivator, composer, rock band member, and dear friend. Voiceworx is open to everyone with no audition. There’s usually about 100 of us, so I try to hide in the Alto section. But you can’t hide with Alan as we all end up singing our hearts out. It’s such good fun and the feel good factor lasts days. Deirdre doesn’t get a look in.
Well, last night I decided on another goal! Voiceworx is performing on 8th December in a huge concert locally in Uffculme and I’m determined to be singing in it. So long as I practice at home before and after surgery to make up for missed rehearsals, I should be fine. And I’m determined to get back to rehearsals as soon as possible after my surgery. I know Alan won’t mind if I start off a bit croaky. That’s what’s great about this choir as all abilities are welcome.
Last night we practiced Queen’s ‘Bohemian Rhapsody’, then Handel’s ‘Hallelujah chorus’, then Coldplay’s ‘Fix you’, then Gaudete and so on. Alan’s co-choir leader, Sue Wilson, adapts all kinds of songs to exciting 4 part versions and now we are singing her version of Muse’s Madness track.
If you want to know more, here’s the link:-
http://mailchi.mp/49000d735f57/10th-anniversary-concert?e=66f6830a5d
Tickets for the concert will go on sale soon so let us know if you’d like come. It’s going to be such a big event and Neil and I are excited to be a part of it.
Right……..back to my current goal to walk up the beacon every day, so I’d better set off. It’s a beautifully fresh sunny day and I reckon I’ll romp up singing all of last nights songs.
Surgery date
I confirmed have a date for surgery! 20th October 2017. Wow!! Its almost bewildering to know that in less than 3 weeks, I shall be rid of Deirdre and starting the road to recovery.
It’s a 7-8 hour operation and so I need my heart and lungs to be as fit as possible. Thank heavens I made that pledge to myself 6 days ago that I’d walked up the beacon every day come rain or shine, and I haven’t missed a day yet. The first 20 mins are uphill and I still haven’t made it to the top without stopping, but once at the top I’m happy to stroll around quite quickly and enjoy the early autumnal countryside. Its not exactly a steady improvement as some days are more tiring than others, but I definitely feel most uplifted every time I get home and get some jobs done. I haven’t had a challenging rainy walk yet, but with nearly 3 weeks to go in October, the heavy rain will most definitely come!
Thanks to my googling last week, I’m far more accepting of my limitations and I’m not forcing myself to eat anything that is painful, even though it might be sensible food. I had a great chat with my surgeon brother David yesterday, who was most impressed that I’ve managed to keep my weight up since the wedding, despite being unable to swallow comfortably. He’d always wanted me to be trim, fit and healthy (you know what surgeons are like!), but now he applauds my absolutely appalling diet. We did laugh. I won’t be able to eat or digest food for little a while after surgery, which I why I need to pile on the weight before hand. I’ve completely given up trying to eat healthily and instead I eat whatever it takes to keep my weight up, like lashings of butter or cream on everything. Yum! Luckily I really enjoy soft berries with local honey and Greek yogurt, and I can eat most cheeses, with my staple drink 50-50 milk and hot water, so I am getting my nutrients in, along with all the naughty sugars and fats. David has been such a fantastic support, as have all my family, including of course my husband, the gorgeous Neil.
Speaking of whom, Neil has been swimming his heart out. Yesterday he swam 4km in the picturesque Whimbleball lake at the edge of Exmoor, for which he’s been training ever since his Port Issac swim. He left at 6.30 in the morning. He did gently invite me to come and watch, but I have to confess I wished him well, then rolled over and enjoyed a further 2 hours sleep in our comfy, warm bed. I can sleep for England these days, which feels wonderful after the manic time I had on steroids.
Neil has now swum 25km of his 100km goal he has set himself to swim by the end of the year. With all the generous wedding donations and more, he has reached his target of £5000 for OPA so we’ve added the local Force cancer charity who also deserve all our gratitude for the work they do locally. Both charities have helped me hugely and are such worthy causes.
Here are the links to the charities and the donation pages:
https://mydonate.bt.com/fundraisers/neilrushton1
Force: http://www.forcecancercharity.co.uk
http://uk.virginmoneygiving,com/CeriAndNeilwedding
I’m currently awaiting my CT scan in Exeter RD&E for the oncologist to review the results of my chemotherapy/radiotherapy treatment. I’ve been thinking about my diet. I ate and drank far, far more when I was fit and healthy without putting on weight. It just goes to show that eating lots of the right food maintains a healthy weight and it doesn’t take much fatty food to pile on the weight. So when this is all over and my weight is stable, I shall look forward to getting back to a healthy diet.
And to end, here’s a damp photo or 2 taken up the beacon this week.
25th September
Culmstock beacon’s Millennium bench. My new training ground.
I’m so tired these days that I find it extremely frustrating. Against Neil’s advice I started gardening a few days ago and lasted just 15 minutes before I had to come in exhausted. This is not good enough!
My dear friends from Fleet came to visit yesterday as I’m missing our annual girls cycling holiday this year which they’ve based in Dorset. We had a delicious Sunday lunch in Culm Valley Inn. It was great to see them as I didn’t get the chance to catch up properly with them at wedding. After they left I was very happy, but very tired.
So last night I decided I must get fit no matter what, and I’ve decided to walk up Culmstock beacon every day, come rain or shine. This is my challenge.
Neil joined me today, as he will whenever he can. My legs were fine but my pulse became quite fast and I had to stop a couple of times to rest and recover on the way up. Once at the top we rest and enjoy the view, then it’s an easy walk back home. This up hill walk is a perfect way to gage my progress.
Next I’m having a massage at Dart’s Farm. Thanks to all Hens who contributed to this generous gift. I need to thank many many more people but that deserves a post of its own.
Supplement to initial blog:
I’ve been googling! The doctor’s nightmare patient, ha ha, but not really. I’ve been concerned about my lack of energy, so in a way it was reassuring to know that it’s extremely common after chemo/rad treatment and could last a quite few more weeks. I thought I’d bounce straight back, but sadly no. Exercise is advised, so I’ve got that covered, and I’ll just have to be patient, which I’m not so great at.
My swallowing seems to be getting more painful too and I was hoping it would start to improve now my radiotherapy has finished. The pain starts about a second or two after I swallow, as the food makes its way through the affected area. Again, I’m expecting things to happen too quickly and, indeed, this could get worse before it starts to improve in a few weeks. I was being a rather over optimistic describing it in my last blog as it’s extremely painful these days, which makes it rather difficult to keep my fluid intake up to a sensible amount. I’m working on that.
So………. I should have investigated earlier. It’s only that I’ve come to realise that I’m no super woman, but just a regular human being going through the same process as most others who have received this chemo/rad treatment for oesophageal cancer. And with that in mind, I’ll brace myself for a few more trying weeks and I will wait patiently for the improvements which I know will follow.
AND……we’ve both got itchy feet! I don’t think either of us has ever remained in the UK for 5 continuous months before and it doesn’t suit us! We’d LOVE to go away AND before surgery!! We have our ideas but we’ll simply have to wait to see my progress and get a fixed date for surgery. Watch this space!!! If ever there’s an incentive to recover, this is one!!
Ceri and Neil's blogs (including Ceri's oesophagectomy) 