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. 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!!!!

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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.

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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:

OPA: https://www.opa.org.uk

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. 

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