Tube feeding – Page 3 – smile each and every day

We have some suggestions

February 26, 2016February 26, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

Further to my post yesterday asking for help to name my gastrostomy tube.

I’ve had some suggestions.

Names suggested for my tube so far:

Lucy

Oscar

Mr mouth

Miss persnickety

Sir foible

Madame violet

Lady lightsaber

Little Lizzy

Richard

Percy pipe

Gastro Gordon (after chef Gordon Ramsay)

Garfield

Sybill

Gourmet Gastro

Gastro Gourmet

Cordon Bleu

Gordon Bleu

Hercules

Any further suggestions? What do you think of the names? Which one would you choose? Looking forward to comments, suggestions and shares. Have a great day guys.

💕💕

Help! My gastrostomy tube still has no name

February 25, 2016February 25, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

With all the hospital admissions since my gastrostomy insertion. I have neglected to do something rather important. Name my tube. This is a task I would normally have done almost immediately after getting in in.

So I’m asking for HELP – I’m looking for ideas for a name for my gastrostomy tube – you know my feeding tube that goes into my stomach. All name ideas greatly appreciated. I will collate the names and then make a decision.

My tube is essential to me. It’s became part of me now. And the the routine we go through has became the new normal. For me the tube is so very useful, it feeds me my special formulated feed through the pump 10 hours through the night, for 8 hours of that I’m in my bed, I’m pump fed 3/4 hours in the morning and 3/4 hours in the afternoon. I also bolus feed through a syringe. My feed provides me all my essential nutrients and vitamins, as well as calories and energy. Both pump and bolus feeding help with my malabsorption and gaining weight. If my gastrostomy tube was a human being on the benefit side it would be a generous provider.

There can be a downside. It appears to have a mind of its own. It leaks at time. I get infections, which at times gave caused me horrific pain, hospitalised me and I’ve needed IV antibiotics. The tube needs to be kept clean. Disposable parts need changed. If it were a human being perhaps I would say it was high maintenance.

Please feel free to comment and suggest a name. I’m so looking forward to NOT calling it tube. Can’t wait to read your thoughts.

Back home and boy does it feel good

February 24, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome

I’ve been out of the hospital for 10 days. It’s been a mixed bag of a week. I’m feeling ever so much better – with worse episodes in between, if that makes sense. The good periods make the unwell, sickly and painful events bearable. I can go for that.

My amazing district nurses have been coming in and changing my dressing, cleaning and observing the leakage area. Applying the appropriate creams; hydrocortisone first on the affected areas and then my saviour – the wonderful cavilon. No matter how busy the nurses are they always make you feel important to them and they make time for a natter. I have a vision of them chasing their tails by the end of the day. Especially with gabby folk like me.

Community dietician was in for a visit this week. With a student in tow. This time the student was a mature male. Keen, thoughtful and already has a good bedside manner. My usual dietician noticed an improvement in my skin, but was concerned that I looked ‘wabbit’ I came back with I think I may have sofa and daytime TV fever. We agreed perhaps a wee drive in the car and if I felt up to it, a small outing with Steve and the dogs might be just what I need. Steve wasn’t too keen on me taking on something too ambitious – I agreed. The Labradors excitedly got into the car wagging their tails frantically. Buddy panting heavily, Bella looked at him as if to say why are you making all that noise – you would think we never went anywhere. I turned and looked at him and said don’t get too excited Bud – you never know, you could be going to the vet. Bloody crazy we are; having conversations with dogs. We stopped near Garvald and let the dogs out for a run. They loved it. Muddy puddles especially. The cool crisp air was wonderful. Watching the dogs run with endless energy is a beautiful memory. The short walk for me was a tiring one, every step sapped me of energy. However the walk did have its benefits. My brain was re-energised. The outing filled me with a feeling of warmth and happiness – I was with my hubby of 29 years and my loyal Labradors.

Intravenous Antibiotics is The Way Forward

February 15, 2016February 15, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome

It’s Saturday afternoon, I’m having some quiet time with my family. My mobile telephone rings. I instantly see it’s a call from the Western General Hospital in Edinburgh. I answer it, it’s the little lovely young GI doctor, Alex, I saw on Thursday. Your swab results are in. I hear him say. The oral antibiotics you are on at present are the most suitable for this infection. But I think after the length of time you have been taking them we should think about you coming into hospital and going on an intravenous antibiotic. What do you think? I quickly gather my thoughts, and immediately my mind is racing and I am weighing up in my head hospital versus home. We chat on the telephone. And to be honest I am not truthful about how awful I’m feeling, or how much discharge is coming out of the site. After a discussion , we agree I will stay at home and see my GP on Monday, with a promise if I feel worse before my GP appointment I contact the hospital and go in.

A couple of hours later my professor from Thursday emailed me in response to my husband and sister doing a fundraising run for The Ann Edgar Charity. I replied saying thanks – at the same time I took the opportunity to let him know the GI doctor had phoned me. I also told him his I really felt; which was pretty awful. I was breathless, sore, leaking discharge and had palpatations. I wanted to curl up on the floor. Prof sent me an email back and said I should come into hospital. Steve took me into the hospital.

I arrived at the acute receiving unit. Waited no time at all. The nurse came and got me and Steve checked me in with the receptionist. The nurse told me what would happen. I would get bloods taken, give a urine sample, get a cannula put in. And then get transferred to a ward.

I was to get routine blood tests and blood cultures. Oh boy did they have trouble getting blood out of me. Every time the nurse had vein in her clutches it vanished. It was like they were playing a game of hide and seek. I’m sure for the medical staff it must be very frustrating. It wasn’t as if I didn’t have any blood to give them. On one of the attempts the nurse managed to secure the vein, then the damn thing wriggled away. As she took out the needle blood ran down my arm soaking the sheet and the hospital gown I was wearing. Eventually the second nurse managed to get the routine bloods taken. The cannula proved an impossibility for two nurses, they both gave it three attempts. They apologised as if it was their fault. My veins are awful and even the phlebotomist has trouble getting blood from me these days so I pity the nurse that gets assigned to me if they are new to taking blood. The nurse explained the doctor was on her way to give me a full examination, she will also put the cannula in, as well as take blood cultures.

The lovely looking young lass approaches. To be honest though on first glimpse she looked fairly stern and unfriendly. If you were to judge a book by a cover I would have got it wrong. She was placid, caring and made me feel at ease. She explained everything in detail she was going to do. The young doctor did all the necessary, she listened to my chest, took the the time and helped me to sit up from a lying position. My stomach felt like I had done several hundred sit ups, every move more than ached. The pain affected my mobility. She gave me a thorough examination and then scoured my arms for a suitable place to insert the needle. These blood cultures weren’t going to take themselves. Her head tilted to one side eyes scanning the surface of my arms. She gently taps the bone at my wrist. This will be sore, but it looks like the best place for me to take blood. She inserts the needle and slowly the blood comes. Once the syringe is full, she transfers it into a glass tube and mixes it with a solution before sending it to the lab. Now for the cannula. That wasn’t easy to get in at all. It hurt, it took a couple of attempts. I have got to admit I was pleased once it was inserted. The doctor told me she wanted me to get intravenous antibiotics started and a dextrose drip. She said I didn’t look well and thought I really needed to get settled for the night. I was transferred to the ward, for the first night I was in a quiet room all to myself. What I felt I needed was some feed and plenty of sleep.

The plan for my hospital admission was to keep me on fluids. Get the intravenous antibiotics going – give me a full five day intravenous course. While I’m in monitor my blood sugar levels. Regularly check my blood pressure, temperature, sats. My temperature was elevated when I was admitted. My blood pressure has a tendency to drop like a stone. The nursing staff were outstanding , nothing was too much trouble. They were always busy and the ward was full however, I was still given the time I needed and never once felt awkward when asking for anything. The staff all seemed to work together , they looked happy in what they did. It made the stay much easier. I got a ct scan whilst I was in hospital. The radiographers were lovely – I was feeling really rubbish that day. They pushed the wheelchair close to the bed and elevated it to the most appropriate height. They took an arm each and helped me onto the scanner. I shuffled my arse till my head was at the pillow. The radiographer put a pillow under my knees. In came the radiologist. He introduced himself, shook my hand and asked how I was. He looked at my gastrostomy tube. We discussed the scan. Many people drink liquid before ct scans – he told me he was going to put liquid through my gastrostomy tube and while the scan was running he would administer contrast through my cannula. I told him the gastrostomy tube has a catheter tip. He carefully linked up the syringe to my gastrostomy tube and pushed through the fluid. The staff were brilliant. They are put under a lot of pressure in the scanning/X-ray department. Trying to fit in emergency scans between routine appointments.

My stay in hospital was made much easier by the kindness of staff. I met some interesting patients whilst I was in. All made the time go quicker.

I was in hospital for 6 days. I got my final intravenous antibiotic at 5.40pm. At 6.30pm I got changed from my pjs into warm clothes. By 7.00pm I had my discharge letter my medication, was all packed and Steve had arrived to drive me home. I was so happy to be going home. I couldn’t wait to get home to our cosy cottage.

Third Time Lucky?

February 6, 2016February 6, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome

its been one of those weeks. Tuesday I was finishing a weeks course of antibiotics for the infection at my peg site. This was the second week. After the first week, there didn’t appear to be any difference to the discharge. Now on day 15 the discharge was more purlent, the quantity increased, the dressings soaked through in a shorter period of time. My nurse came to the house to administer my lanreotide, as well as change my dressing and clean the peg site. She asked how I was feeling, I told her truthfully , I felt awful, the pain in my tummy was getting worse. She commented on my palor. She took a swab of the site and advised me to get in touch with my GP.

I contacted my GP the next morning by telephone, we chatted, I had an appointment to see my net specialist that afternoon, she said she knew I was feeling really poorly but it was better I went to the hospital to see the prof. I did. He was great, as usual. Listened to what I had to say, asked me and Steve some questions and then decided it would be a good idea if I saw my GI consultant that day. He made a few phone calls, walked with us and escorted me to a hospital bed. Within less than ten minutes a GI doctor was at my bedside. He took a further swab, and gave me the option of taking medication in hospital or at home. I opted for being at home of course. So it’s a third week of antibiotics four times per day. Fingers crossed its third time lucky and they do their job this time. We are waiting on the swab results, which will most likely be Monday. My community dietician telephoned me today to see how I am, she will come back to the house in two weeks.

Sometimes when you feel pained and unwell it doesn’t matter how many folk you have around you, you can still feel alone – particularly at this time it’s good to know folk care.

A Further Eight Days In Hospital : December 4th 2015 to December 11th 2015

December 27, 2015January 5, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

We arrived at Edinburgh’s Western General hospital. I only sat down in the waiting reception for a couple of minutes and a nurse came with a chariot to take me to a bed and get me clarked in. One of the consultants gave me a thorough going over. Well the question is, how long are we keeping you? She asks. Steve prompts a reply well anything less that five weeks is a bonus, but it would be a preference to have her home for Christmas to share a Brussel sprout or two 😀 The consultant broke into a smile and said. No promises but be will do our best. Within an hour and a half I had been booked in, blood taken , urine sample given, cannula inserted, porter called and I was now getting wheeled along to the ward.

I get into the ward of four, the nurse helps me out of the wheelchair, and assists me into the bed. She points out where the toilet and shower room is. After explaining everything to me, she placed the buzzer close to me and said if you need anything press the orange button, and we will come to you. I thanked her. Steve put my things in my locker, spoke to the nurses, and then came back to see me, gave me a kiss and hug and headed off home – for Steve it had been a long day. I looked round the room. In the bed opposite the lady was sound asleep propped up with several pillows, the bed next to her, the lady was awake, hello I’m Jess she calls over to me. The bed next to me has an elderly lady who informs me she is going home in the morning. She seems so happy about it. All in all three elderly ladies, a quiet room, an exhausted me, hopefully I will get a sleep.

I did sleep, the staff were brilliant and the room mates friendly. The lady went home and we got a new patient. Jess and I talked away like a couple of school kids, we laughed and joked and had so much in common – I’m 49 and Jess is 87 years of age. Anne the lady opposite me was very deaf. It made conversation difficult. My consultant came to see me and it was decided no food was to be taken orally, the only fluid was when I was taking my medication. And it was to be minimal water when taking meds. The lack of oral fluid takes a wee bit of getting used to. Your mouth feels perched. Your lips press together tight. The nurses are very kind and supply you with endless nice cubes and foam lollies, you can clean, rub your mouth and or throat. It really does help. Mouth wash helps too. The dietician came too and the plan was to continue feeding through the pej at 100 mls per hour for 20 hours out of every 24 hours.

Consultant visited next day – we chatted. Talked about how we thought the hole may seal up. I told her about us watching supervet, the honey helping the cat. My dedicated husband digging out honey out of the cupboard and unfortunately how unlike the cats jaw repaired fairly quickly my tummy was sticky and clothes sticking to me. She looked at me and said Elizabeth what were you doing with the honey? I laughed I explained Steve spread it on a half slice of toast and it leaked out as soon as it was in. Thank goodness for that she said. I guess she watched supervet. He actually rubbed the honey on the cats wound. I think she had visions of us rubbing the honey on my tummy – no such luck – ha ha ❤️

The nurse came to do my flush on my pej. Oh boy was it difficult to flush. It actually took 15 minutes to get 50mls of sterile water though the syringe. The tube is so fine. Attached to my tummy is my pej and then my feeding pump. When I get my 4 hours of, this is when I want to shower. I am still attached to the dextrose drip – for the fear of having a hypo on their watch. But after being on TPN ive mastered being able to shower with such gadgets. Once the flush is done. I prepare myself for my expedition. The walk to the toilet is still a difficult one – I do it in a couple of trips, trot along carrying two towels and using the drip stand as an aid – made the first trip to the shower room. Now I will head back and get my clean pjs and toilet bag. As I turn round, the nurse is standing there with my things. Don’t you try and do all that on your own, we are always here to help , she said. Got to admit I was so glad she brought them. Now are you going to be ok? the nurse asked. I nodded. I put down my clean pjs on the chair, and started taking what I needed out of the toilet bag. I did the needful, managed somehow to get my clean pjs on. As I was about to put my socks on I could feel the beads of sweat running down my back, I eased myself up from the chair, and decided to walk back to the bed as I was. I really needed to lie down. As I was walking over to my bed the nurse came and took my toiletries from me, put them on my locker and then quickly walked back and took my arm, my you are very flushed she said. Oh it’s the heat of the shower, I just need to lie down a minute. I said. She walked me back to my bed, helped me back into bed. I was so grateful. That shower had just sapped me of all the energy I had conserved in my body. Half an hours rest and then it was time to get my feed back up and running.

A young man walks into our room, now ladies who would like to put a request on the hospital radio tonight. I’ve been in hospital many many times – in fact I wouldn’t like to think how many hospital admissions I’ve had, and I personally have never listened to hospital radio. Due to Anne’s deafness she didn’t take part, however the rest of us all requested something. His parting words were have a go at our competitions. Makes the evening fun.

Teatime came – the three ladies had their meal . I stayed attached to my feed. My body must be fed – my tummy doesn’t even rumble. They had fruit crumble for pudding – one of my favourites. It must have sent messages to my brain and got my gastric juices working overtime; when it was time fir a dressing change my tummy had been excreting gastric juices that resembled PVA glue – just the kind that it makes up on its own. My brain must have been saying to the belly ha ha doesn’t this food look good, smell lovely. That old saying my belly thought my throat had been cut but instead of rumbling grumbling noises I get leaking discharge. Then visiting – which I always enjoy when my hubby comes in to see me. I get a chance to see how he is, and catch up with the outside world. Visiting finished at 8pm.

8pm was the time the radio show started. The three of us put our headphones on. The music played, the dj chatted – we bletherered over it. Competition Time. It was a mystery voice, we listened, the lady, Avril, in the next bed said its Chris Evans. I shouted out the telephone number to her, she dialled it in her phone, hey presto its ringing she says. Oh my goodness I’ve won. She says, i have never won anything in my life. That boost fair cheered us up. We listen some more and sing along , the DJ tells us another competition is coming up shortly: this time sport. The question is how many people watched the Fifa World Cup world wide in 2006. There are three options. I’ve heard this question before. I know I have, the answer 26.29 billion jumped out at me. I shouted out the answer. Jess said phone. I picked up my mobile and dialed the hospital radio number. Engaged tone. Try again. Jess shouts over. I try – beep beep: rather than a melodic ringtone. The music stops on the radio, that’s it, the dj will announce a winner I’ve resigned myself to defeat. The dj’s cheery voice makes you smile, he introduces a chap called Gary on the line. Gary is calling from The Edinburgh Royal Infirmary. He is asking for a request. The DJ then mentions the completion. Oh I’m no good with mystery voices. He says. It’s ok Gary, Avril won that competition, we are onto a new one. He asks the question again. I’m not sure says Gary, but at least I can just guess A, B or C. At this stage I’ve got steam coming out of my ears. My competitive streak wanted him to get it wrong so I could phone in. He answers. Oh sorry Gary, that’s the wrong answer. Both ladies and the nurse that was in our room at the time cheer. I phone again. It’s still engaged, I look up, both ladies in chorus – keep trying. So I do. Finally it’s ringing. He asks me the question. And yes I get it right. Competition winners receive borders biscuits. My reward was different and I was pleased with what I won. A mug and a key ring.

All that excitement had tired me out. It was 10pm. Time for the late night drug round. The nurse came round and did all our meds. The other nurse did our obs and then it was time for my next feed. The familiar beeping of the pump to let me know the feed was finished and time to change. The nurse came to detach the finished feed bottle, flush the tube, check the peg site and then restart a new feed for overnight feeding. The nurse came armed with a syringe, and sterilised water. She drew up water in the syringe. Carefully attached it to the appropriate part of the peg and pushed to get water into the tube. We looked at each other. The syringe was locked tight. It wasn’t budging a cm. she tried to push harder. Nothing. Her face was rosy pink. This isn’t budging. Does it ever get like this.? She asked me if it often gets like this. I answered with its frequently difficult to push but never as hard as this and I’ve never not been able to put water through the tube. The extension is a very fine tube and much longer than the original gastrostomy. I think I need some help here. She said. We abondoned the feed. She paged the on call doctor, since it was now 11.50pm. The duty doctor came. It wasn’t budging for them either. A decision was made for the night. A dextrose drip would go up to maintain my blood sugar levels and a GI consultant would come see me first thing in the morning to do something with the blocked tube. And overnight the nurse would regularly check my blood sugar levels with the finger pricker to make sure the drip is doing its job. It did.

8.30am – the GI consultant was standing at the bottom of my bed. Well trouble what are we going to do with you now He said in his thick Irish accent. I grinned at him and replied unblock this tube if you know what’s good for you! He drew the curtains round the bed. Then got the syringe and attached it to the tube. He wiggled and pumped back and forth. Nothing. He detached the syringe. He then pulled the tube slightly back, I could feel a strange feeling in the pit of my stomach. Oh that’s a tad sore I say. Yes you’ve gone a whiter shade of pale was his reply. Just bare with me, please, ive got a plan he continues to say. So I lie there and wait in hope. He pours sterile water into a beaker then draws it up in the syringe. He attempts to push some into the tube, it’s still not moving. He uses the push pull method once again and then all of a sudden WHOOSH!!!! Me and my bed are wet. Water and gastric contents on pjs, face, hair, and bed linen. The doctor tries to apologise. While laughing I’m thanking him for unblocking the tube. Im so relieved. And much more comfortable. The nurse joins us and starts cleaning me up. The doctor leaves us and goes attend to something else. Half an hour later I’m in clean fat face pjs, got the hospital bed propped with pillows my blankets, iPad, writing material. Looks like I’m all set for lying on a sun lounger by the pool in Ibiza not getting ready to try a feed. The blue curtain round my bed slowly moves, a voice quietly asks, is it safe to come in Elizabeth? It was the doctor who just unblocked my tube. However, he was more concerned with drenching me and the bed. I tried to put on a grumpy stern face and say I was annoyed. I couldn’t. Soon as I saw him. We both laughed. Let’s try the feed then he said. And so we did. It worked. For two days,

For two days all I had was feed via the gastrostomy tube. The only thing that went down my throat was my medication. On day three the tube blocked again. This time there was no flushing it. I’ve got to admit it was getting scary. The consultant explained he couldn’t push too hard with the syringe for the fear of the tube explicating. That statement terrified me. There is only one thing to do – take the jejunostomy tube out. Once he had actually said the words – take it OUT. I wanted it removed NOW. So I got my way. It was removed while I was in my hospital bed in the ward. Got to say it was a strange sensation. There was a slight tugging feeling. Then my tummy felt like it had never before: the doctor carefully pulled the tube at a slow steady pace. This wasn’t an experience I was comfortable with. I lay still and thought it best to co-operate in any way I could. My whirlwind tornado tummy had died down. As he continued to pull the tube gently, gungie watery gastric juices ran out as the tube was easing out. Then there was a click. At last the end of the extension tube. That was it out. Thank goodness. Doctor and patient both relieved.

Time to Take the big step back to straight forward gastrostomy feeding (peg) . Sort the feeding regime with the dietician. Start of on a very slow rate with my pump. Just 20mls per hour for 5 hours. Remember I haven’t been fed direct into my tummy and how much am I going to leak. Five hours later – dry dressing. I felt like a toddler that had gone all night without peeing the bed. The nurse came to flush my tube and check everything is ok before increasing the rate. And so the rate was increased gradually over the next 24 hours until I reached 80 mls per hour. At this rate there is a leak when the feed goes in, but only a slight leak. I asked the consultant when the hole would seal up and I would stop leaking his answer was how long is a piece of string. I just don’t heal as well as some people. And take much longer than others.

We had a discussion at the hospital and decided I could go home on my feeding regime with
The support of my district nurses coming in through the week to do my dressing, check the tube in general, deal with my skin, give me my lanreotide injection, and any other general medical/physical/emotional support they always do
Community dietician coming to the house very regularly to check on feeding regime, change my prescription if need be. Give instruction on changing connectors for tube. Take my weight. Give us general support.
Regular contact with my GP.
Home support from my hubby, and boy do I get this ❤️

Well the staff at the hospital had been tremendous, my room mates were great company for a bunch of sick folk. I even managed to get some online Christmas shopping done – I bought a couple of bits and bobs or Steve, Tony and Stuart. But I’ve got to admit I was ecstatic that I was leaving them. The thought of Our own sofa with my Steve, Buddy and Bella was just what the doctor ordered. I yearned for my home life back.

Leaving hospital after five weeks in the ward

December 17, 2015January 5, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome

The decision to discharge me from hospital wasn’t taken lightly. My tummy was still leaking when I had any oral intake. My body was tolerating the feed through the pej which was the important thing.

The drive home was wonderful, I soaked in the scenery as Steve drove us home. I appreciated all the countryside I had missed seeing while being couped up in clinical clean setting. As we drove along the A1 I watched a ship sale down the river forth, a sight I normally took for granted. You don’t realise what you miss seeing when you are confined somewhere until you are actually back out there again. We rolled up in front of the cottage. I was so excited to get in and see the dogs. I had missed them so much. As they had missed me. Buddy and Bella were fabulous when I went in, no jumping up to welcome me. They were so happy, wagging tails furiously sitting at my feet.then running up and down the hall. Buddy getting my slippers. Tilting his head, looking at me – with a big grin on his doggy face and if he could talk I’m sure he would say “it’s lovely to have you home mum”. I’m a bit of a nutter and I imagine what buddy’s voice would be like if he could talk. He would be rather proper, roll his R’s and mind his P and Q ‘s. I’m sure he would have a fairly deep voice, and always be ever so polite. After all he is a pedigree – ha ha.

Steve had the house just perfect. Heating was on. Everywhere was so fresh and clean. He had bought a beautiful new duvet cover, pillows and sheets for our bedroom. It looked fantastic. And so inviting. I was so tired I couldn’t wait to get into that bed. Steve got all my things unpacked from the hospital; believe me there was lots to unpack. It’s amazing what you accumulate in hospital and all the lovely gifts you get whilst you are in. Once organised it was time to set up my machine and feed through the pej – this was my peg feed with a jejeustomy extension. Basically fed further down, bypassing my stomach giving the hole a chance to heal. The down side is the tube is very fine and very long so I can’t bolus feed only continuous with the pump. The other is I have to feed attached to the pump at home for 20 hours out of 24. However, if it helps me heal, keeps my blood sugars up and maintains my weight. I will go for this.

We get organised, set the feeding pump up and settle down for the night. Tomorrow we have the district nurses at 10am.

10am that familiar hello it’s only me rings along the hall. Evelyn the district nurse with her smiling face plumps her bum down at my feet on the sofa. How are you kid? She asks. We chat about my time in hospital. She cleans my peg site. Looks at my arms, –oh dear what’s been happening here? I explain when I was in hospital I had micropore on my inner arm for five minutes. Now it’s all blistered and sore. Evelyn puts a dressing on it. She then gives me my lanreotide which is due that day too. Full service on the sofa. After I’m dealt with, buddy and Bella come through to see their favourite nurse. They love her coming, as always buddy sits at her feet and tries to sneak a kiss like a naughty school boy. All the district nurses that visit are very friendly, good, very caring and more than competent at their job, all with an excellent bedside manner. And whichever nurse visits I know I will get first class treatment, well looked after, all my questions answered, and a bit of a blether. You shouldn’t have favourites but I do, and Evelyn is one of mine. She takes time to talk, always asks how Steve and the boys are. Thinks of things and advises us on all sorts of useful matters. Like organising my mattress lift, getting my cavilon prescription for my skin, taking letters to the doctors surgery and much more – if you say that’s brilliant thanks – she will reply it’s my job: well I know it is but I also know she goes that extra mile. I can hear Eveyln’s brain thinking what would be best for Elizabeth. She takes time to talk not only to me but to my hubby and sons if they are around.

The next day we muddle on together, Steve looking after me like I’m a princess, catering to every whim. While my nutrition goes through my tube. I still have use of my throat and swallowing mechanism. It was recommended that I try and eat very small portions, no meals as such. Mainly for my mouth hygiene. I also used mouth wash and foam lollies & ice. Steve and I love the TV show supervet. There was a cat with a wound that would not heal – bit like me – vet cured it with honey. Gave Steve an idea. Steve made a a slice of toast and put honey on it. I ate half a slice. Got to admit I really enjoyed it – I love honey – and the taste and feel of something in your mouth when you haven’t been well and have not eaten for a while is a wonderful feeling. Shortly after eating the toast I checked my dressing, oh my goodness, dressing and tummy covered in honey. I needed an appointment with my GP to discuss pain management, my wound, and a few other things. Steve called the surgery. I had an appointment for the very next day at 9.15am.

Up with the lark we get ourselves ready, or should I say Steve gets us organised. Everything perfect to the last detail. I’m hooked up to my feed. He has put my pump and stand in my favourite Gorjus rucksack that Brian & Margaret bought for me in Ibiza – all tubes safely tucked away – no tripping zones. Wheelchair in the boot, just in case we can’t get parked in the car Park and it’s too far to walk.

Great there is a space right at the surgery – sun shining on us at last. The walk to the waiting room was a mean task – but I did it and I’m damn proud of it. We didn’t wait long and then the GP opened the door and called me. Just take your time – your pace. She says. In her consultation room we discuss my time in hospital, my pain mamagement and she voices her concerns that I am home with an open wound with leaking gastric fluid. And still in some considerable pain. She gently touches my inner arm and I winced. My what’s up here. I pulled up my sleeve. And she saw the dressings that were put on two days ago by my district nurse. It was decided to take a dressing of. As we took it of together a horrid stench filled the air and a nasty looking greyish green pus ran down my arm. The good thing was the dressing had brought all the bacteria to the surface, now we needed all the awful stuff to leave my body. Oh dear we will have to get the treatment nurse to look at this now. But firstly. I will write you a prescription for antibiotics. Once finished with the doctor, Steve and her took me through to Yvonne the treatment nurse. Yvonne, carefully patched me up. Cleaning my peg site, then using iodine on my arms then dressings to cover up all the infected areas. Yvonne, as always was fantastic, not always fixing me up physically. She listened, gave me a willing ear – an emotional crutch for a few minutes just when I needed it. Yvonne took me back out into the reception area and instructed the girls on the desk I needed to come back in three days. She said to me see you in three days, but if you feel unwell get the district nurses to come to you and do the dressings, do not come out if you feel unwell. And she said to Steve best get that wheel chair to get her to the car. And so he did.

Day 5 home from the hospital I had a visit from my community dietician, Marion. She deals with all my orders for my feeds, my pump, etc. Marion visits me at home offering information, advice and general moral support. When we started talking about how I was feeling, how much was still leaking out Marion wasn’t too impressed. She felt it wasn’t too good for a home situation. She discussed things with Steve and I and asked if she could talk to my gp and my consultant at the hospital and let them know her concerns. Her main worries were I was not getting enough calories in to satisfy my hungry malabsorbing body and the leaking peg site was not ideal. I don’t know what weight I will have, I’m after all only a mere dietician she said. But leave it with me.

We managed together for the next couple of days. It wasn’t always easy. I was fatigued. Tummy sore. Peg site leaking. The home phone rang. It was our GP. Elizabeth, how are you feeling? I answered truthfully. She came back with I’m just off the phone to your consultant at the western general hospital – he wants you to go into hospital today. How do you feel about going in now? It took the wind out of my sails, however I knew it was the right thing to do. Steve packed me a bag, as he did, I wandered into the kitchen and gave my loyal labrodors, buddy and Bella a hug each. I won’t be away as long as last – promise ❤️

The Move to ward 107 – stayed with them till November 25th 2015

December 7, 2015January 5, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

So I was on Total Parental Nutrion (TPN). Nicknamed Dracula food by Steve & me. We have loved having you the nurse said but your in demand, ward 107 want you. It’s only across the hall way. You don’t need to do anything. We are going to wheel your table, bed with you in it, and all your belongings. Paula and Esme took charged of my bed and my TPN. You have to be skill full in maouvering, especially when the there’s a patient like me hooked up to a feed and have a picc line in my arm, they are moving the bed and moving the pump stand . All went well. Paula made sure i had ice cold water; which she always did. Both ladies were very attentive in 106 I would miss the wee snippets of conversations or when you were feeling a bit down or needing something they would notice – I guess there will be staff in 107 that will be the same. Looking back the nursing in 106 wasn’t just physical support the emotional support was invaluable. When I had the episode of tissue oedema – Michelle was wonderful and spent time with me.

I’m in my new room of four. Hopefully I won’t be here too long. The other three beds had patients in them. The bed opposite – a lady in her 60’s: Susan, the bed beside her – a lady in her 50’s and the bed beside me had the curtains drawn with a lot of complaining.

It was the following morning I met my camp mates. The lady opposite – Susan – we became chums, helped each other, gave a willing ear to one another. The bed with the lady in her 50’s – we called the bed the lucky bed. Most people only stopped overnight in that bed. The bed beside me was quite another story. I nicknamed the patient “the gringe” – she was feeling miserable, had been in hospital for over 6 months. She said it herself in some ways she was desperate to get away from this place and in another way she felt safe and secure. Rather sad really.

The doctors/consultants/surgeons were the same as previous. Thank goodness Bev the dietician is still looking after me. She pops into the ward everyday, between one and three visits a day depending what there is to discuss. The nurses on the ward are all efficient, many of them are upbeat and help boost moral.

Day 11 of the Total Parental Nutrion (TPN) and I’m still leaking, the pain in my stomach doesn’t want to subside. The ward round is early this day, the usual gathering of doctors and surgeons round the bed. They examine me, listen to how I’ve been, they explain they would have something they would like try. Since I cannot get fed from the peg at the moment – even at at 10mls per hour it leaks. New plan put in an extension tube. The extension is called a jejunostomy feeding tube. It was to get put in that day in endoscopy. Cripes no waiting around.

So what’s the jejunostomy feeding tube? – The procedure was done down in endoscopy. Basically I was going to get a 6 foot very fine rubber tube inserted – it would go through my stomach and threaded through my intestines till it reached the jejunum. It will allow the feed to run through and go into me, It shouldn’t leak since the feed will be going a lot lower down.

The nurse comes over to me – “time to get you in a gown” she says, ” they will be taking you down soon”. She had to help me I’m still attached to the TPN – that’s not allowed to get disconnected, so one arm has the cable running to the Dracula food. She carefully and skilfully helps me manouevre out of my pjs and into the gown. At first it was all awkward, wondering which arm goes where, thinking about stuffing cables and large bag of feed into arm holes of tops, making sure everything is the correct way round and not inside out. Pjs off – gown on. All ready. I will go for a pea. Now I am ready.

The porter comes for me. The nurse has to come down with us, because I have TPN running. I’ve arrived. The staff are waiting on me.

I sign the necessary forms, get introduced to the four staff in the room. There are two doctors doing the procedure and two nurses assisting. First thing get a new cannula in. As ever it took a few attempts to get the cannula in, thankfully the doctor was a gem, she was gentle. All set for the sedation so I wouldn’t remember a damn thing 😴. Next came the delightful mouth spray – tastes of banana – really numbs the mouth and toungue. Then the nurse gently put on blood pressure cuff, sats monitor and oxygen. Then my least favourite – the mouth guard. It was carefully placed in my mouth and strapped. Then I was turned on my side. They were Blethering away to me, and said we are going to put the sedation in now. That’s the last I remember – thank goodness. Next thing that’s clear – truthfully is the next day. I know Steve visited me and my sister visited me – only because they told me.

We got the feed up and running. All attached and running. Bev recommended running at a low rate to begin with. So for the first 24 hours the TPN would still run, I would get goodness from two means, Once the rate was up and all running ok, I got the TPN down. The decision was to feed through the extension for 20 hours of 24 – giving me 4 hours of freedom. Ya beauty. This was the first time in four weeks I was not linked up to something for 24 hours per day. A step in the right direction. Big smiley happy face that day.

Bev had sorted the dietary requirements so I would be getting plenty of calories: the downside to this was changing the feed very late at night. One night. The nurse was doing my flush and putting up the feed. We heard a commotion behind the screen. It was Susan. She was buzzing to get up to the toilet. The CSW came to her, She was short and dumpy, perfect bobbed hair, although she waddled she actually looked like she floated. She was very cheerful, when she spoke to you no matter how you felt you couldn’t help but smile. She had a big heart and a big laugh. “how can I help sweetheart”? “I need the to go to the toilet and I can move – I’m strapped down to the bed” the little dark haired lady looked at her slightly puzzled, ” you daft moo your not attached to anything – think you have been dreaming” she said. She waddled away, chuckling to herself, you know it’s going to be a break time conversation. Small incidents like this kept me going.

I was in hospital for five weeks. Eventually. We had a feeding regime. I still had a painful tummy. And boy was it still leaking gastric contents. I asked how long would it take for it all to heal up. No one knew how long it would take. The time had come to take the big step. I was getting discharged. Home to our house. My own bed. Snuggle in with Steve – see my buddy & Bella. Smell the fresh air – oh yes can’t wait. It was four days later than originally planned, my discharge papers were done, meds done, Steve came to pick me up for 4pm. District nurses and GP phoned – organised for next day. Community dietician & consultant at western general phoned. All sorted. So excited 😀.

Some ward time to make me better

December 1, 2015January 5, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

The nurse and porter transferred me from the surgical obs unit ward to the surgical ward 106. I was put in base a in a room of 4 ladies. The staff were efficient and attentive and catered to every whim. They made sure I was comfortable and had my buzzer right beside me. All the strength that I once had seemed to have left my body. What used to be a simple task – getting out of bed, walking to the toilet, felt like a monumental task.

I needed someone to help me get comfortable, and get in and out of bed. I have graduated from the catheter to the commode and now walking to the toilet – woo hoo. Now I can walk to the bathroom with a stick in one hand and holding onto the arm of the nurse with the other.

The next few days consisted of cleaning, dressings, obs, and pain relief. Most of it, I slept away. I was given triple intravenous antibiotics. The nurses on this base have been fabulous. I’ve had a 10% dextrose drip up to maintain my blood glucose levels. One of the awful symptoms of my carcinoid syndrome is spontaneous hypoglycaemia. My blood glucose level drops at a moments notice. The best way to avoid this is to keep something going into my body to elevated my glucose levels. Since my peg feed is leaking, there is no chance of feeding me through it at the moment – a glucose drip will at least keep my numbers up.

In the other three beds patients came and went and I was still there. I was so tired and sore I didn’t take too much notice of who they were.

With the exception of hubby Steve. Visiting in the first couple of weeks was kept short. One of my visitorsin base a was my precious niece Lindsay. She brought a picture and a story from her gifted daughter Sophie. Sophie was at church on the Sunday and asked if she could read out her prayer. She did. It was for me…..I don’t think there was a dry eye in the church. Sophie is seven years old.

So has came the day I’m moving from base A To base B. I’m graduating, 😀 now managing to wash myself with a basin – woo hoo. Actually the physical independence of being able to wash yourself is a fabulous feeling even if you feel you have just gone 10 rounds in the boxing ring. It takes five times as long to recover from getting washed as it did to actually get washed.

The room I moved into was friendly enough. There were two elderly ladies in their 80’s and a lady in her 50’s. We all got along. The lady in her 50’s was in the bed that changed people every few day The three of us were in the same room for two weeks. The three of us looked out for each other, pressed the buzzer for one another when needed, shared stories and shed tears. The three of us built up a friendship, that would last for at least the time in the hospital. We had our own system of communication and helping one another. When Mrs Mac struggled back from the toilet with her zimmer through the night and couldn’t get her oxygen back on, I would turn the torch on my phone shine it to her and guide her through the process of putting back on the nasal oxygen. Would then shine down to her slippers and she would use her stick to push them under her bed. When Rae couldn’t find her glasses we would shout over to her where they were. When I got up to go to the loo myself – they both would buzz – I would laugh and say do you think I need two nurses to take me 😀 ?

The one time the ladies really did help me was when they heard me swearing. I woke up my hair wet, the blue vest top clinging to my skin, beads of sweat running down my forehead. I went to lift my hand to press the buzzer and found I couldn’t lift my arm. It was a tonne weight. Using my other hand I searched around for my phone to try and shine a light. OMG all I could see was something that resembled a football shaped fist. My hand and arm was so swollen. My instant reaction…. “For fu*****” . Both ladies were instantly alarmed, put their lights on and called the nurse. The nurse came. Turned off the drip. Took out my cannula and called the doctor. I had tissue oedema. It was not pleasant. I had to get another cannula put in. The bad news for me is my veins keep collapsing, they look big and juicy and then disappear at a moments notice – naughty little blighters. After seven attempts the doctor got the cannula in. All this at 4am.

As all this was going on sometimes I find it hard to smile, the pain in my tummy, the endless leaking, the hypos……….

One evening around 10pm I’m feeling particularly homesick. My phone vibrates, I’ve got a video call from my hubby. It’s so wonderful to see our sitting room and our Labradors. I call their names, see their ear prop up, oh that’s my mums voice I can see in their face. I feel tears stream my face. Warm happy tears. What I would give to be on that sofa with them now.

We try a feed through my peg feed – just at 10mls per hour – bearing in mind my usual rate is 100mls per hour. Three hours later we look at the site – it’s wet. The 30mls have came out. Abandon feed. Bev the dietician comes to talk to me. She is a lovely lady. She has really kept me going. I get weighed – I’ve lost 5 kg – Bev says I’ve spoken to Mr Paterson-brown, I think the best thing is to put a picc line in and give you some TPN. TPN is a 24 hour feed directly into the veins. Steve and me call TPN Dracula food. It’s a Friday morning when they requested the picc line so I was told I may have to wait till the Monday. However, a young man comes to my bed at 12.45 and says hello there I’m here to take you for your picc line.

On the journey down to the cardiovascular lab to get my picc line inserted we met Mr Paterson-brown, he gently touched my shoulder and said “I’m pleased your getting the line in today Elizabeth, I will be up in the ward to see you in a while”. These good bedside manner from the doctors really help.

Oh wow entering the cardiovascular lab was something else. The staff were welcoming and chatty. There was quite a collection. A nurse, a radiographer, a radiologist and a technician. They were checking my date of birth and the radiographer said oh you are exactly two months younger than me. Oh dear, I’ve got the Devils child working on me. I looked at this beautiful lady, “you are only joking ” I say, she laughs reaches over to me and gently strokes my arm “I was born before the Omen came out” she whispers “I’m a genuine 666” we laugh together. One good thing it did do was make me feel relaxed. The nurse comes in, “come on you two bletherers lets get Elizabeth all set up”

The room has so many expensive technical machines. Absolutely fascinating. I get wheeled over to the bed. It’s rather high, I need a couple of steps to help me get up onto the bed. Once I’m on the long skinny bed the nurse straps me on securely. She puts the blood pressure cuff on my upper left arm and the sats monitor on my middle finger. ” I like to keep an eye on you at all times “she says. Up on a massive screen comes my name and all my readings. Yes, I have a pulse 😀. Thank goodness for that. Now for my right arm. It gets held down straight. The technician has a helmet on that looks like he is going to do some welding. He covers the majority of my arm with the green sheet, leaving an area of skin exposed. The radiologist then starts to do his work. After he introduced himself. His first words were just a scratch – why do they say that ? It’s never a scratch, he put the local anaesthetic in. He would use an ultrasound to guide the line up my arm, fiddle around via my armpit and guide it round to my heart. Fairly complex stuff. I needed more anaesthetic and it was more fiddly than he would have liked. But with his expertise he did a grand job and got it in. The X-ray machine came down approximately three inches above my chest. I tilted my head to the left, I could see my body on the screen, full chest X-ray with the picc line runnining from my mid left arm up to the arm pit and carrying along till it reaches the heart. WOW that’s ME. The nurse came round to my side, put a clear film dressing over the line. This dressing needs to be changed every week Elizabeth. She continued to take off the blood pressure cuff and sats monitor. And finally unstrapped me from the bed. She put the steps back to the bed for me to climb down. “Now take it easy” she gently said. My head was spinning, I took my time and gathered my thoughts. Gently does it girl. Down the steps and then over and onto my bed. The porter was waiting to take me back to the ward. When I got back I glanced at the clock, as I often did, it was 3.20pm. Gosh doesn’t time fly when you are having fun.

My Bear Hans keeping an eye on my picc line.

A few hours after getting my picc line in. Along came my lifesaving Dracula food. This is TPN – food fed through your veins 24 hours per day. Very clever really. The food is light sensitive and needs to be covered by a bag.

Here is Hans looking after my TPN

Once I was started on the TPN feed I had to get transferred to ward 107. My two ladies said they were going to miss me. Likewise I would miss them. The care I had in 106 was great – consultants coming round to see me at least twice a day, nurses looking after me very well.

From NG to PEG

November 3, 2015August 2, 2017 by Lizbeth, posted in Tube Feeding

The first health professional to suggest tube feeding for me recommended PEG feeding. However, when the appointment came round with the specialist he was very doubtful, in fact negative in approach. He explained how for me it wasn’t the best going in blind into my tummy when we didn’t know exactly where neuroendocrine tumours were situated. He suggested the NG tube – a much safer alternative in his opinion.

So here we are 12 weeks later. The NG tube has been a great friend. It’s kept me fed. Prevented the dreaded hypos through the night. I’ve even gained 0.8 of a kilo. My NG tube has came to its end of it’s three month life and due for a change.

Whilst I have been at home during the 12 weeks getting good care from my hubby and help from our sons. We have been getting fantastic support from my nurses who come to our home, check my dressings, change them, give me my lanreotide, my flu jab, etc. the nurse Evelyn, was great, she gave Steve a flu jab at home too. Dietician has been coming in to talk things through, weigh me. Prescriptions delivered. So while I’ve been getting looked after at home I haven’t been forgotten at the hospital. My consultants have been discussing what’s best for me.

A top surgeon a the royal infirmary in Edinburgh is willing to put a peg feed in surgically. This means a general anaesthetic. So here I am the night before my operation in the ward. Last Tuesday was pre surgery day. Steve brought me to the hospital to get a check up and go over everything before surgery. We were met by a lovely nurse from New Zealand. She listened intently, wrote all the necessary. Had heart and lung tests, blood tests. Got weighed. She took a note of all the medication I am on. She said if I didn’t have carcinoid syndrome or spontaneous hypoglycaemia I could fast at home and come in the day of the surgery. However, I’m complicated and an overnight stay before the surgery is needed.

I’m in the ward, Steve and I are chatting away, it’s 6pm. A lovely lady walks up to my bed, introduces herself and shakes my hand. She is going to be my anaesthetist during the operation. The first thing she asks me is if I really want this surgery. She goes on to tell me she is due to retire in seven months and I am only her second patient with carcinoid syndrome. She has had many neuroendocrine patients, but they did not have the carcinoid syndrome. This was only to emphasise how rare the condition is, not to say she was incapable. Believe me, after talking to her it’s apparent she seems far from incapable, I have complete faith in her. The plan is to let me have my overnight feed and have a breakfast, then get put on a glucose infusion. She wants to have another anaesthetist working with her whilst I’m in theatre. She told us the normal blood pressure cuff will not be sufficient and I need to have an arterial cannula fitted to monitor my blood pressure. As well as I will have a glucose infusion running throughout the operation. She described me like a volcano. Both my blood pressure and blood sugar levels going up and down at a moments notice. She explained why after surgery I would go to high dependency. Steve looked at her, he said “you know how you medics ask patients on a scale of one to ten how do you rate you pain – can I ask you, on a scale of one to ten how worried are you about Elizabeth’s surgery” – her answer was instant – she said “15”. She then smiled and told us she would take very good care of me. She will send her colleague up in the morning, and would probably come up herself to see me. After a bit more chit chat she left. Her mark was left. I liked and trusted her.

Half an our or so later a dashing gent with a beautiful voice approached my bed. He introduced himself – Mr Simon Paterson-Brown, my surgeon for the procedure. We chatted about the operation, what he was going to do, the peg. He explained the dieticians will come see me after the operation and decide when the feed can get started. Anything from 24 to 48 hours after insertion. He gave me every opportunity to discuss the operation and ask questions at my own pace.

Later that evening Steve left for home and I got tucked into bed. Me being me I was allowed to have my overnight feed – so that went on – via my last NG tube feed and breakfast in the morning. They weren’t willing to chance any spontaneous hypoglycaemia attacks prior to surgery.

Morning on the day of surgery – October 20th 2015. Steve pops by the hospital to see me before my op. It’s 2.20 and their coming to take me away Ha Ha. It’s time. It thought I would be more nervous. I was waiting on my knees knocking or my hands shaking – nothing. A big burly man in blue scrubs came and wheeled me out the room. The nurse that had been looking after me came along, she chatted away, held my hand, in general put me at ease. The handover from ward to theatre was about to take place. I turned my head to the left and saw a familiar face. One of the anesthetist nurses was someone I knew, she just had to check I was ok was her dealing with me – I was delighted Gillian was in the room. I was wheeled into the anaesthetics room.

Wow – prep that needed to be done with the anesthetists. Yes plural folks. In this operation I had two – greedy bugger that I am. The first thing that was said was hello again good to see you how are you. Pleasantries exchanged. The NG tube was removed, then they decided I should get some oxygen an Valium to get an arterial line run in my right wrist to constantly monitor my blood pressure. This is a tricky job and you need a couple of stitches to hold it in. I also had 3 cannulas inserted. I then heard a soothing voice say time to change the mask this is going to put you to sleep. It must have. Because the next thing I know I woke up somewhere completely different with a peg feed inserted into my tummy. I was in the high dependency ward.

The Blind Leading The Blind……

September 23, 2015January 5, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome

The Monday after Steve’s retina repair surgery we have a busy day ahead. Steve’s vision is highly compromised and the next weeks recovery is crucial. Steve gets up and puts in his eye drops, he has three different drops to put in. I would help, but unfortunately it would more than likely send him back in to the ward. My fine motor skills are not good. If I was to attempt to put a drop in his eye , it would probably result in a poke in the eye. For Steve it’s a stressful enough time without a shaky hand coming at your eye offering to try and get drops in. Me, it’s time to detach from my feed pump and flush my tube. Then the usual creams etc.

steve gets the cereal for us and I make the coffee. Bad move. I have ‘blank’ moments, between these and the poor coordination I managed to burn my arm.

9.30am there is a familiar knock at the front door. It’s my nurses. They are here to do my dressings, check my tube, general well being, etc. I cannot emphasis enough what a support they are. At first I wasn’t quite sure about the need for nurses to call in. However, they have proven their worth on many ocassions; offering help and advice as well as practical treatment. They are friendly, easy to talk to, skilled and I have confidence in them. One big bonus is the nurse giving me my lanreotide injection every 21 days at home. The three to four days before my injection my diahrea gets worse. When I travelled to the health centre to get my injection there was always the risk of needing to rush to the loo on my travels. So I would go prepared rather than be in a blind panic I may shit myself in the car. The nurse does not just treat me and leave, there’s always time for a quick natter. Blethering about TV, cars, etc. They will Chat to Steve, or one of our sons if they are around. Our lab buddy is especially fond of one particular nurse. On this day, we are discussing the logistic problem of getting to the hospital this afternoon for my outpatient appointment to discuss how my NG tube is working out.

We have a rest between nurse leaving and going to hospital appointment. I’m saving my energy and Steve needs to lie down as much as possible to help with the recovery of his eye.

We arrive at the hospital. The walk from the car to the building is short and no steep hills. However, Steve finds the walk challenging; the alternating heights of pavement to road is difficult. Drain covers are awkward, as are the high kerbs and changing surface on entering the hospital. One bonus was the hospital does have a zebra crossing in the grounds – the large white parallel rectangles give confidence.

We are in the consultation room with my doctor and dietician. We report there has been good news since we had our last meeting. The NG tube and daily ten hour overnight feed has helped keep up my overnight blood glucose levels. Since I have been on the feed I no longer need to shuffle along the hall during the night on my bottom. My blood glucose level now tends to be higher than 1.8 and I can manage to get to the bathroom without the fear of passing out. Pre NG tube I would get to the bathroom – usually shuffling along on my ass, the room was swooming and my through the night snack would include a supply of Glucogel.

We discuss how I have been in general and how we are managing as a family. The doctor agrees the NG tube is necessary. My doctor wanted to see what the benefits artificial feeding would be for me. Now he suggests I get a peg feed fitted surgically. This means an operation and a general anaesthetic. I cannot get it fitted endoscopically. He says that would not be a good idea – it would be going in blind with the possibility of hitting tumours and causing problems. I am scheduled to meet up with the surgeons and get the surgery within two months.

I will admit I feel fairly apprehensive – having an operation, the surgeons routing around in my tummy and getting the peg fitted. I’m not always the best after an anaesthetic. It’s that whole coming around and feeling woozy. I guess it’s the ‘out if control’ that I don’t like. Although I do know getting the peg feed should be worth it. I have faith in my clinicians to make the right call. Whilst I am bit vain, it will be good to have a less visible to the public feed tube. Also I’m sure there will be much less chance of me aspirating with the peg. I’ve only had one real scary time with the NG tube – when I woke up and felt as if I was drowning. Believe me it wasn’t a pleasant experience. There has been a few not so good moments – being sick – trying not to wretch. Let it happen – even though it’s awful, not only can you taste the vomit, and feel it running down your nose, you feel it in the tube too. When the sickness has stopped, the clammy hands have dried out, time to flush the tube – firstly make sure it’s still in the tummy, check oh level and then flush the tube. Twenty minutes later and all is well.

This means Steve and I will both have surgery within one month of each other. Some would say quite a lot to cope with. For us it will just be another event at the ranch.
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Taking care of each other: as always

September 15, 2015January 5, 2016 by Lizbeth, posted in Nets/carcinoid Syndrome

Wednesday: 8am the day after we arrived home from the wedding down south Steve was on the phone to the doctor surgery to get an appointment. His eye was still troublesome. He described the vision out of one of his eyes like looking through a very dirty window. He said it was murky. Good – he had a consultation for that day. He saw the new young gp at our practice. He looked at Steve’s eye, asked all the appropriate questions. Told him he couldn’t see anything in his eye, gave him a prescription for antibiotic drops and advised Steve it would be a good idea to go along to the optician and get them to have a wee look – no real urgency, but don’t leave it too long. Steve came home phoned the optician, spoke to their receptionist, told them what had been going on, she gave him an appointment for an eye examination the following afternoon.

Thursday: both Steve and I woke up tired. We did our usual routine. My feed pump/flush, skin care, meds. Steve did his eye drops, meds. Breakfast. Dogs. Nurses came in for my dressings, dealt with my NG tube. Despite not feeling like it Steve went out to work for a few hours – lifting the heavy ride on lawn mower into the van, cutting grass, hedges, weeding. At 3.30pm Steve went the optician. She didn’t have very good news for Steve, two thirds of his retina was detached. She recommended he did not drive, keep his head as still as possible and go straight to the eye hospital in Edinburgh. Steve being Steve, said he couldn’t leave his work van in the car park so he drove home first. Got changed out his work clothes then we headed to the hospital. The drive into Edinburgh was tense. Steve looked pale. Both of us were scared of the unknown. We chatted on the journey, shared our fears. We thought we would have to wait in the emergency department. NO. We were sent straight to the ward on the second floor. The nurse led us to a consultant waiting for our arrival. He fully examined Steve and then explained to us what was going to happen. He leant over a picked up a large model eye and talked it through in detail the operation Steve needed urgently. Steve looked at the doctor and said I only have two questions: will it get better on its own? When the doctor said no, quite literally this operation was to save Steve’s sight. Steve said well question number two isn’t really a question its a request. The operation – will I get put to sleep. I would really appreciate a general anaesthetic. The doctor explained for this type of surgery the eye needs to be as still as possible so a general anaesthetic is advised. Another doctor came in to speak to Steve and have a look at his eye. Whilst he was the other doctor and I had a good chat. He said he appreciated how ‘nervy’ it is getting treatment/operations on the eye. Particularly of this scale. I said to him, my Steve is no cry baby – he has been through cancer twice, had three gruelling weeks of radiotherapy and all through that he coped remarkably well.

Friday: for me – up very early; made the decision to have half an overnight feed, get up at 5.30am, bath, skin ritual, etc. all in preparation for going to the hospital to be with Steve before his operation. At the hospital, we spent a quality hour before the nurse whisked Steve away and it was time for me to go back home. The nurse handed me a piece of paper with the direct line phone number to the ward – I took it from her and held it as if it was a piece of priceless China that would smash if I dropped it. I placed it into my jacket pocket and guarded it with my life. The nurse assured me he was in very capable hands and I could telephone anytime. The drive home was very lonely without my soulmate. Not to mention the car was very quiet, if you think I can talk – well steve can fair blether too. I arrived home, got into my pjs, linked up to my feed pump , put on a movie and snuggled in with our Labradors. Steve and I text each other back and forth before his surgery. He wanted to know I was home safe and was all linked up to my feed ok, I wanted to know how his pre med was going – we exchanged texts until I got a text from Steve at 10.20am to say that was him heading to theatre.

12 noon my feed finished. The dogs were as unsettled as me. Clock watching certainly does make the day go slower. Nearly 1pm – I phone the ward – Steve is back from theatre – everything has gone to plan. I want to go see Steve for the afternoon visiting – first thing I need to do is make sure I eat plenty. The last thing I wanted was my blood sugar dipping. I got two ensure drinks down me and a fortisip compact before having a bowl of cereal. I packed some extra t shirts and shorts for Steve and put in the bag sweets and his favourite oasis juice. When I arrived at the ward Steve was snoozing. His operated eye had a patch on. As I approached the bed he opened his eyes. I know the footsteps he said. We were both as pleased as each other to see one another. Steve was in a lot of pain and would be for quite some time. I didn’t stay too long the first visit in the Friday, went back in the evening for a couple of hours.

Then I went home . Had something to eat. Smothered my body in three layers of Cream for my skin. Took my Meds. Then the usual pump feed ritual; hooked up for ten hours of continuous feeding. I didn’t want to sleep in our bed on my own, so I camped on the sofa with the dogs and TV for company and comfort. I missed my cuddly hubby.

Saturday: rather than getting woken by my Feed pump beeping, I awoke to the familiar noise of my iPhone getting a text. It was from Steve, letting me know what kind if night he had and asking how I slept and asking how I was feeling. Steve was getting home later that day – best news ever. Big downside. He is going to need three more further operations. For the immediate future we are taking life gently and a day at a time.

As soon as we are able we are going onto the Hotels Combined site below and booking ourselves a relaxing couple of days away. Somewhere not too far from home – a pamper day or two sounds fabulous. Click on the image below if you want to see great prices for hotels UK and worldwide.

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