I’ve just returned from having such an uplifting lunch in Taunton with my dear friend Vanessa, and I’m home now full of energy to update my blog.

We had our post-op meeting with Richard Berrisford on Wednesday and it went well. He told us he was really pleased with my progress and described me as I the ‘model patient’. It was really good to hear that the pre op chemo/rad treatment did it’s job and that Deirdre was no bigger than the scans had predicted, so there were no nasty surprises.

I keep forgetting to mention that my operation is called an ‘Ivor Lewis’ operation after the surgeon who pioneered the combined abdominal and thoracic surgery in the 1920s. He was a Welshman (1895-1982) from Carmarthenshire where I lived as a child and became a consultant surgeon in hospitals in Wales and England, later lecturing about his technique to surgeons from around the world including USA, Canada, Australia etc. Its rather a nice feeling to know that a Welshman’s surgical brilliance has saved my life. Here’s a link to find out more about him:  http://yba.llgc.org.uk/en/s10-LEWI-IVO-1895.html

During my operation the surgeon took out 23 lymph nodes around my oesophagus which were examined afterwards under a microscope. Only 3 had microscopic residual tumours called R1s in them which is good news as the remaining 20 were clear. And of course these 3 little nasties are no longer inside me but in a path lab somewhere. None at all (R0) would have been amazing news but just 3 R1s is very good. Apparently in the USA they’d be really happy with that and not go forward with chemo, but here in the UK they are more cautious and will follow up with chemotherapy. We knew this was to happen anyway, no matter what the results were, and we have an appointment with the oncologist at 12.20 this Monday in Exeter to find out when the next chemo will start. I’ve had contact with patients who have had my surgery and the cancer returned a few years later, so I’m determined to tough out this next chemo to ensure that Neil and I will continue to travel the world well into our 80s. Thats the plan!!

Despite all this good news, I had felt quiet and a little low since chatting to Richard. I think the main reason is that I can’t eat much without painful tummy problems and I’m so keen to get some nourishment inside me to aid recovery. Its very frustrating. I failed to walk up to the beacon yesterday as I was so tired. Maybe also its because I didn’t want those R1s and had hoped for R0s. Despite the surgeon recommending I move on to soft foods, I’m still suffering with bad stomach pains after many meals, so it’s case of trial and error as to what I can eat successfully. This affects my energy levels as I’m not eating enough to climb mountains. But so long as I focus on the long term recovery, then I’m fine. This is only one small early phase in my story.

So on to much happier positive notes, I managed to go clothes shopping in Tiverton just 5 days after getting home from hospital as I need baggy clothes which are loose around my middle. The retail therapy worked and I loved it. I had such a successful shop with new comfortable clothes I’ve pretty much lived in since. I then walked on to meet Neil at the swimming pool and I was feeling so good that he treated me to afternoon tea at the nearby Hartnell Hotel. We had such a lovely time, but I paid the price of breaking the rules just 5 days home as I felt awful once the scones worked their way beyond my stomach.  I’ve certainly learnt my lesson about food, but it was worth it as we both had such a lovely day.

Neil and I walked up the beacon again last weekend, then relaxed in the hot tub. We’ve started popping in to see friends on good days, but we can’t really plan social events we cant cancel as I never know if I’m going to have a good day or a bad day, but it feels wonderful to get out and about.

I absolutely loved going back to choir on Monday evening. That’s only 3 weeks post op! So many people hugged me and welcomed me back, it felt amazing. Thank you everyone in Voiceworx for making me feel so loved. I’ll DEFINITELY be singing in the concert in Uffculme on 8th December. There are 400 tickets for sale, but they’ll get snapped up by relatives of the performers. Here’s the link if you’d like to come: www.ticketsource.co.uk/voiceworx

So the good days and the not so good days will continue until we figure out which food upsets me. Today a most definitely a GOOD day, and long may it continue.

I never actually described how I felt about my operation and what it was like as I was so ’out of it’, so here goes:

The night before surgery, Neil, Cara and I checked into the Heartswell Lodge next door to the hospital. This is a lovely wooden framed building, overlooking beautiful gardens, for patients and relatives to stay. The three of us went out for delicious meal in a local pub and had a great evening. Marc and Sarah arrived at the lodge late from London due to train delays and we all had an air of excitement about us. It felt more like catching an early morning plane to go on holiday.

Next morning, we left the lodge together in the dark at 6.30 to walk across to the hospital, laughing and joking. I don’t think I was even nervous as finally the day had come to get rid of Deirdre. We all stayed together in the waiting area chatting away. Occasionally I was taken off to be measured for those awful socks and had a final blood test.

The worst part of the early morning was that the anaesthetist suddenly warned us that there was a good chance this operation might be cancelled due to a shortage of beds!!! WHAT!!!! That really threw us. Marc, Sarah and Cara had spent a fortune on train tickets to come down from London and Marc had juggled time off work. Cara’s Andrew was due to arrive later from London and we were all emotionally prepared and even excited to face this massive operation and the difficult weeks ahead.

Then 20 minutes later, suddenly it was back on. It all happened so quickly and I was whisked away to the operating theatre. I remember chatting away happily to the anaesthetist and hospital porters, then the next thing I knew I was waking up full of tubes in the same excited mood that I entered the op. I felt fine! Amazing! Neil, Marc, Cara, Sarah were all there for me, and I could give them the thumbs up and happily reassure them that I FELT FINE!!! Morphine is the most wonderful drug.

I was put in an open HDU (high dependency unit) ward called Crownhill right next to the nurses reception where they could keep an eye on me through my first night. They explained various buttons I could press, but I kept forgetting what was what. One was a call button, another a light, and another was a self administered pain relief button, which apparently I pressed far too often. No wonder I felt great!

Next morning, all the family came back to see me and stayed all day. It felt great to be alive as I drifted in and out of sleep full of tubes and an oxygen mask over my face. I was so glad they’d had a great day in Plymouth the day before, visiting the gin factory and the aquarium etc. Neil is the best tour guide.

The first thing I noticed was how fat I was. I had huge fat white hands and legs which bulged over my surgical socks. Apparently, the minute the surgeon cuts into a patient, the body fills itself with fluid which slowly dissipates the body returns to its normal state. This is a big reason for IV drips. Another thing which surprised me was that I couldn’t feel any pain where the 3 1cm diameter drainage tubes entered my body, but I could most definitely feel the pain of my surgery, and this is the post op pain I’m still feeling.

The surgeon had made a 12” incision in my back behind my right arm, then prized my lower ribs apart to make a 4” gap between them to get into my chest and perform the operation I described a while back. They’d also deflated my right lung to make space for the surgery, and I now have exercises to get that back working 100%.

The days came and went in hospital in a very medical way with nurses tending to me. It was difficult to sleep with other beds full of post op patients, so I drifted in and out of sleep. Because I over did the self administered pain killers once, I then under administered it and felt the true strength of the pain. I never want that feeling ever again!

My immediate family visited me and it was really great to see them, but I asked for no one else. Day by day I became more self aware and I didn’t like the mind dulling effects of the self administered morphine, so soon quit that and relied on regular pain relief like a Diclofenac suppositories and Paracetamol intravenously as I still couldn’t process much by mouth, although I did accept a sip of Oramorph at night to help me sleep.

I barely felt a thing when they removed the drains which were huge tubes reaching far into the empty spaces of my body. I couldn’t belief how long they were when they pulled them out of me. The 1cm diameter holes in my side seemed to heal without stitches. And even when they removed the stitches from my scar, it was painless. The only pain I felt, and still feel, was inside my ribs and the whole area around the operation area.

I’ve already described the rest of my stay in hospital and my home coming. Poor Neil had to listen to all kinds of grunts and groans when I first came home as I tried find a comfortable position to sleep as, initially, it was agony to try to try to turn over. Anyone who has suffered broken ribs will sympathise. Neil offered to move bedrooms, but we both wanted to be with each other, and anyway, Neil sleeps like a log so I could groan away.

But that has passed now and its only 19 days since the op. The pain has reduced to the feeling of a massive bruise as though I’d fallen against something hard, and every morning I wake up with less pain. I barely notice it during the day and I don’t feel a thing when we are walking. My only problem now is eating. Some foods can make me feel really ill and bloated, so we persevere with recipes of pureed food to find which works best.

So far, I’ve had good days and bad days, usually alternatively, so we can’t plan social things yet. But yesterday was a GREAT day, and today is a GREAT day too! Thats 2 in a row! I always know when I wake up how much energy I will have. I’ve been meaning to write this medical update since I’ve been home, and now its out of the way, we can get on with looking forward to good health and more consecutive good days until the bad days become a thing of the past. It wont be long.

I really didn’t think I’d be saying this already,  but it’s such a beautiful day today that I thought we could walk just to the gate at the base of the beacon. But once there, how could I not continue? Neil knows me better than I know myself so took his camera. It felt wonderful, the two of us sitting on the bench in the low autumn sunshine looking over Culmstock and beyond to Dartmoor in the distance.

I feel such gratitude to my surgeon Grant Sanders for making all this possible. I’m still all aches and pains but walking is the best remedy. We have so much to look forward to. Life is GREAT!!!

I’m home!!!! I cant believe it. It feels wonderful. Sorry for the late post but its been a busy day.

The last couple of days in hospital actually got harder for me as I was attached to a food tube and therefore couldn’t leave the building for our fresh air walks which meant so much to me. It felt like being in jail and was getter harder and harder to keep my spirits up. People I’d never see again came and went from my ward for surgery.

But they had to test how my eating went before discharging me after the balloon procedure on Wednesday. The first Readybrek breakfast Thursday morning tasted so great. I only ate half of it as I was worried about how my body would cope with food, but it was fine. Then my lunch arrived – a half portion of pureed chicken, pureed veg and gravy and it tasted delicious! It did trigger an unpleasant reaction afterwards, but apparently that was just my body ejecting my pre-op food. Then my pureed evening meal tasted awful. I had no idea what it was but ate it anyway. I just wanted to get home and would have eaten anything to get there. The only worry was a slightly elevated temperature so I couldn’t take anything for granted about leaving Friday.

Then Friday came. The big day. Would they release me? My surgeon and his entourage came to say hi doing his rounds, saying I could go home if both blood and X-Rays tests were fine. Fingers crossed. I ate all my Readybrek, had my all important blood test and X-Rays and waited…..and waited. Another awful meal came. I ate it. No way could I survive another day there. Neil arrived with an enormous basket full of fruit for the staff, so heavy he needed a wheelchair to carry it. Then the news came. All the results were good and I was free to go. The relief was unbelievable and quietly emotional.

They extracted the final tube from my bruised arm and we presented the fruit to the staff. Exhausted, I took my place in the wheel chair and we left. Wheeling me out of that main door felt like breaking out of jail into freedom.

I must confess that I was so emotional and so exhausted I didn’t have the energy to leap about with glee. I left the wheelchair for Neil to take the photo at the entrance, but barely had the energy to sit in the car. I just wanted to go home.

Driving home was lovely. It was a beautiful warm sunny November day, the leaves were falling through the Devon countryside as I watched Dartmoor pass by on the left as Neil drove. I kept thinking of all the walks we’d had there over the years and started looking forward to the many more we’ll be having together. It made me realise how strongly I’m beginning to identify myself with Devon.

Neil had made a fun welcome home sign on our front door. Gosh it felt good to be home. Without even visiting our rooms, I headed straight for the shower to wash the hospital away. Then we sat together and watch Blue Planet II and various other TV shows. Then Neil went to collect Cara from the station. It was so lovely to see her. Then bed. I barely had the strength to let my family know I was home. I was exhausted, relieved, and possibly slightly traumatised by the whole 2 weeks, but I was home.

I slept so very well. Unbelievably well despite being still quite painful. No one woke me for blood tests, or meds or anything. Saturday morning, my energy started flooding back. I’d been studying Aga videos in hospital, so showed Neil how to cook ‘proper’ Aga fried eggs. Neil had finished painting his dovecote and had it erected while I was in hospital, so our friends Jo and Stuart delivered 7 beautiful white doves for us to home, then joined us for coffee as I felt so well. Then Marc arrived, taking a break from a big Devon party he was at. Then Cara’s boyfriend Andrew’s parents, who live in Toulouse, and their family from Exmouth popped in for tea after their lunch in the pub. What a lovely normal day.

When everyone left, Neil and I watched the rugby together in front of the fire with Cara and Andrew. Every moment I’m home I feel more normal, and definitely fitter. It hurts when I cough, or laugh or cry, but that will fade. My breathing has already improved simply being home with all the stairs we have here. We didn’t get time to go for a walk today , but we will tomorrow. Marc’s coming back tomorrow then all children will return to London.

I have to eat a puree diet for 2 weeks, preferably not soup. I need solid pureed sustenance. I have to eat meat, chicken, fish, cheese etc to get protein into me, with rich sauces. I have to eat everything fattening I can manage to pile in the carbs. Forget the healthy living I’ve followed over the years. I need lashings of butter and sugar on everything. It sounds so bizarre, but I’ll get used to it. My challenge is to keep the weight on as my stomach is so small and my appetite not great…yet!!

Now is the start of the recovery chapter. I don’t want to be too busy as I want to savour every moment of being home with the lovely Neil and build up our lives together again. Being apart for 2 weeks was 2 weeks too many for both of us.

I’ll update this blog occasionally, definitely when I make it up to the beacon again.

Thank you for all your amazing support, cards, calls, texts, emails etc etc.

I’ll be back!!!

I feel great!!! It’s 1am and I had my endoscopic procedure yesterday to inflate a small balloon into my pyloric muscle at the base of my stomach to make a hole in it to allow food through. Eventually this hole will heal up as the muscle starts to work properly again pushing food out of my stomach and into my bowel. From their point of view, it went well and we’ll test it with liquid food at breakfast. I was heavily sedated, which I’m very happy about as I didn’t really like the sound of it and I can’t remember a thing. 
They wheeled me off in my hospital bed at about 1pm (I’d wanted to walk) and Neil came as he wanted to see the resulting pictures. We had quite a laugh with the nurses working in the endoscopic unit in their heavy jazzy lead tunics. More tubes went in (with difficulty as my veins seem to be seizing up), then the next thing I knew I was back on the ward ( just as well I didn’t walk!)

Neil was with me all day and saw the pictures which looked like good results. The kind radiologist had squeezed me into his busy list and still made time to talk the Neil. Such great staff here. 

Neil too was tired when he left here at 6 last night , knowing I was fine, and the minute he left I fell promptly asleep. Now I feel really great and wide awake and it’s the middle of the night! And no nose tube. Yay!!! Nasal freedom ha ha !! I still have a tube feeding me into my right arm, but that’s nothing. The previous night I had a tube in my left arm attached to a saline drip, one up my nose attached to a drain bag and a third in my right arm attached to a drip stand. Try going to the loo with that lot!! So now feel I could walk 10 miles!!!

I’ll read a while to pass the time and hopefully go back to sleep, then in the morning I’ll try my first liquid food. I’ve no idea what they’ll give me. I’ll probably get diarrhoea for quite a while next. Be warned Devon friends!! But hopefully it won’t last too long as my body learns to cope with my modified stomach and it’s new ‘conduit’. 

The only problem with feeling as well as I do, stuck in hospital with an iPhone and Wi-fi is Internet Shopping!!! It’s GREAT!!! Neil’s going to heave a huge sigh of relief when we leave for oh-so-many reasons!!! 

Get the flags out for Friday (we hope!!!), but first, Bon Appetite Moi for my first mystery breakfast Thursday morning. 

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.