Well it’s been a difficult few days with a happy ending! I just didn’t feel like writing during this period but I’m ok again now. 
This blockage at my pyloric muscle at the base of my modified stomach has stopped almost everything getting through including pain medication so I’ve had a few very painful days and nights and therefore no sleep. I’ve been absolutely exhausted. Ironically the only relief I got from the pain was from walking so I was walking up and down the ward corridors through the night. The best parts of my days were Neil’s visits when we’d get out for some fresh air. 

Obviously one’s body needs nutrition and sleep for healing so without this, things are not good. I tried the fortified drinks which made me feel so ill with painful diarrhoea that I was almost sick, so that was no good. Also what was still really difficult was being constantly woken in the night by various staff to take my blood pressure or give pain medication or drain the tube coming out of my nose etc. I might nod off for some desperately needed sleep only to be woken again and I could never get back to sleep due to pain and so I’d walk. 

It wasn’t easy for Neil to see me in this way. He wrote a comprehensive letter to the surgeon which I read out to him during his morning round before Neil arrived . I’m having to learn so much medical information to be able to understand his replies to Neil and myself. 

But we got results. They changed the way my oral pain medication was administered to coax it through my system by pumping out liquids above the block, then I’d take the medicine which had a chance to get through. Also a kind night nurse decided to give me 6 hours of uninterrupted sleep time. Wow! What a difference!!! Suddenly I slept more and was in less pain. 

Today has definitely been the best day since my op. I just feel so much better. Neil and I walked up to Marjon university above the hospital where he swims. It’s a good uphill walk for me in the glorious sunshine and they have a lovely coffee shop there. We chatted away watching the students practice their sports. Apart from a tube up my nose feeding into a bag hidden under my coat, I felt quite normal as we planned all the things we’ll do when this is all over. 

Then when we got back, surprise surprise, my lovely nurse Tim took out the many metal stitches from the wound in my back and it’s healed well. I’m so much more comfortable. Things are definitely moving forward. 

But my nutrition has become a big issue. What I really need is the endoscopic procedure to open up a hole in my pyloric muscle, but the department which performs this is overloaded and really busy. If they could have seen me today I might be going home on Wednesday but alas. My valiant surgeon pulled out all the stops to get me an appointment for Wednesday so that’s the next big step for me. Food! How will my body cope after 2 weeks without?

Today they fitted a PICC line into my arm through which they will start tube feeding me. Apparently I’ll receive a full day’s nutrition through this, although it hasn’t started yet as they’ve suddenly had new emergency patients arrive. (I’m no longer in my own ward and we have 2 new ladies just arrive.) I’m sure my energy levels will improve hugely with food on board although everyone I meet seems surprised at the distances I’m already walking and how well I look. Long may it continue!!!

This evening after Neil left, I’ve been chatting away with visitors and staff in the ward and I’m just about to settle down to watch a film on the laptop. 

So my next big day is Wednesday. Hopefully I’ll sleep well tonight and enjoy tomorrow as Wednesday is the final step in all this (I hope!!) and will come with new challenges. Fingers crossed I’ll be home by Friday. 

I’m getting excited!!!!

Strange day today. It started off so badly. My pain medication wasn’t working well so I barely slept and I had horrible dreams. I didn’t want to get up and I couldn’t contemplate walking the corridors or doing my breathing exercises. I was useless. 
My surgeon Arun Ariyarathenam who’s been working with me since Grant Sanders took some leave has been great. He arranged intravenous pain medication for me to get some rest. He also decided to put me on a nil by mouth diet all morning to prepare for a barium meal X-ray to see what exactly was happening with my stomach. Then we’d make further decisions based on that.

By the time Neil arrived I was exhausted and unhappy. Neil gave me such a big hug and I cried.(Unfortunately it hurts to laugh or cry at the moment so luckily the crying in rare but I have had some hysterical moments with many, even with Arun!) I cried for the very first time in all this, not because I felt sorry for myself, but that I felt so hopeless. 

Neil was lovely. He put me to bed and I slept uninterrupted for 2 hours! When I awoke he explained that he set himself on guard duty and wouldn’t let anyone in. (I have a private room daaaaarrling). He banned the cleaner and all sorts in non essential nurses. He was sooo bad!!! It seems Neil on guard duty is quite a force to be reckoned with!!!
So after my 2 hours sleep I felt a million times better and planned our escape. The lovely nurse Sharon told us about a secret exit to the back of the hospital. 

First we went down to the depths of the hospital for my barium meal. I drank sips of it standing in front of a big lead wall as he took various X-rays as I swallowed. He did front, back and sides then we returned to put our escape plan into action. 

I put on my shoes and dressing gown and we set off down the lift and out to the back of the hospital. It felt wonderful being outside again. Neil carried my drain for me (so romantic). We found a lovely leafy area with picnic tables but each table was full of smokers. My lungs aren’t working well anyway without that stink. So on we walked and found a bench in the sun hidden away by itself overlooking a pond. Albeit a rather scruffy pond, but hey! We were soaking up the autumnal sunshine outside. It felt glorious. 

Going back I felt elated. Neil had once again worked his magic on me. I was told I couldn’t leave the hospital with a drain attached, but we did anyway which made it feel even more exciting. 

So…. back at the ranch, changes were afoot! Arun came back and said the results of the X-rays were very encouraging and some food is getting through. And also , after a lot of jocular banter going back and forth he surprised me by saying the final drip can come out!!! Yay!! I’m so fed up carrying it everywhere and it will make a big difference to my sleep. When the nurses extracted it I asked to see it. Do you know it was about 14” long inside my body!!! Wow! 

So now, all I have left is a tube up my nose which has to stay until my swallowing is totally sorted out. 

I feel so elated. Every tiny step is significant for me. Neil has been with me every step of the way and I love the fact he’s here every day. I love him so very much. There’s a university swimming pool just 15 minutes away and he’s now swum 41km of his 100km goal!!! 

What a topsy turfy day! Such are the vicissitudes of life (especially mine!!)

Hi everyone. I’ve already done 4 laps of the ward and walked up 3 flights of stairs today so feeling good. I still have one drain attached which I have to carry constantly like Mrs Thatchers handbag! 

They’ve decided not to do the endoscopic dilation tomorrow after all. They think it’s rushing it a bit. At the moment I’ve got a tube coming out of my nose collecting all the fluid from my stomach which should usually flow on into my bowel but it isn’t. Instead it’s flowing down that tube and into in a bag pinned to my robe. Today they decided to bung up the tube and see if my body had dilated itself but it hadn’t. They’ll try this again tomorrow and over the weekend to see if at any point the fluids reach my bowel then I won’t need the endoscopic dilation procedure. If I’m fine then I’ll come home Monday or Tuesday. But if my body hasn’t adjusted naturally then they’ll perform the dilation as soon as there’s someone available to do it and as soon as a bed becomes available on Monday or Tuesday then they’ll release me 2 days later. This isn’t a race and I’m glad they are taking their time. I haven’t even moved on to soup or ice cream yet! I

I had a lovely long visit from my brother Gareth today and Neil comes every day. I don’t really need more visitors at this stage. Just immediate family. There’ll be plenty of time to visit when I’m home next week and the weeks beyond. I’ve be overwhelmed by your support. Thank so so much for the cards, emails messages and everything. I’m definitely getting there!!!!

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

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.

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

 

 

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.

“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

 

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!!!!

Big day yesterday! Neil and I drove to Plymouth for my pre-op assessments which all went well. The cycling test did made me smile. When Neil and I are out and about cycling, I’m very used to smiling my way up the hills, pretending to Neil that I’m absolutely fine, whereas in fact, my heart is racing, legs burning, and I cant wait to stop and simply die on the side of the road. Well, there I was on the exercise bike cycling ‘up hill’, all wired up to an echocardiogram, with a mask over my face to monitor my breathing making me feel rather like Miss Piggy. The anaesthetist in charge of the tests was training a nurse, so he gave a running commentary on my progress which was also appearing on graphs on screens. I started well and effortlessly, but as the make-believe hill got steeper, I slowly reached that point when my breathing quickened, my thighs started to burn and I couldn’t wait to stop. Aerobic had turned to anaerobic respiration. But as usual, I continued to pretend I was effortlessly cycling uphill, pride intact. Yet he could see what was happening on the screens and he quietly explained to the nurse that I was faking it! Well, in a kinder way, saying I was probably an experienced cyclist masking my true tiredness!! HA!! Cheek of it!! But he got me ….. busted …. straight away!! Will Neil ever trust my cycling face again? Alas.

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.

~~~~~~~~~~~~~~~~~~~~~~

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.