A comfortable place to die

As I have grown older I have came to realise that there aren’t many guarantees in life. The only certainties in life are birth,death and change. We are born, changes take place and we die. To make things more pleasant all round and something we take for granted in the United Kingdom is that we will always have somewhere to go when we are sick. Get taken care of free of charge and when the inevitable happens are granted A comfortable place to die.

When a person is faced with a terminal illness, at some point thoughts come racing in to the mind where do you want to spend the last days. People’s answers are very personal ones. For some being at home and spending every last possible moment being cared for in the family home is their wish. Others prefer to be cared for in a hospice or hospital environment. Either way, the experience I have witnessed personally the care given has always been outstanding. The nursing staff making sure in the last weeks, days and right down to moments comfort is paramount.

There is no getting away from it making a choice where you want to end your days is far from easy. There is an awful lot to consider. However even when all the pros and cons are weighed up and it’s been decided home, hospital or hospice sometimes it just doesn’t go as smooth as you would expect.

We may choose to stay at home and be cared for by your loved ones and supported by district nursing team. Most of the time it goes well and you get your wish and you can stay at home. The district nurse team and Marie curie nurses that cared for my Father in his home gave him a caring, dignified last few days. For that we cannot thank the wonderful medical team enough and will forever be in their debt. Home nursing teams work very hard looking after the patient, ordering drugs, equipment, supplies, communicating with other health professionals. We are lucky to have such good staff working on the NHS, providing us with with amazing service. They are dedicated, take care of the patient and make sure the family are coping too. At present I have the most amazing team of District Nurses that come in to my home and give me injections, service my stoma/gastrostomy tube, change dressings, etc. They also look out for my nearest and dearest.

However for some there can be a time that everything is all set up and there is a spanner in the works and you need shipped off to hospital and you no longer get the home care you so wished for. In a snap decision one of most difficult decisions of your life has been literally taken out of your hands. What we have to remember is things happen for a reason and getting sent into hospital is most likely with best intentions.

When we make a decision to end our days in a hospice it’s a choice that certainly does not come lightly. Whilst you get fabulous care and are in a safe and secure environment, it’s not home. Although hospices have a much less clinical feel than hospitals you can’t quite move your pet in. The biggest problem at the moment is the waiting time to go in. Main reason being there just isn’t enough palliative care beds to go around. It’s heartbreaking but the practicality is that we are actually waiting on someone passing away to then offer a bed. In the UK we get used to getting our health care and this includes all our cancer treatments free of charge. All us human beans in UK take our health care for granted; go to the doctor and don’t think about the cost. Many people think more about putting money away vet bills for our pets or saving for a holiday than donating to a charity.

Hospices, such as Marie Cure and St Columba’s, home care nursing from Marie Curie and Macmillian are not NHS or big private hospitals, they are self financing. They are charities. Rely on donations and fundraising. They offer their services free to patients who need them, at times it may be respite care where a patient goes in for a few days then goes home, or the nurses go to a patient’s home and takes care of them; gives the family help with washing the patient, changing pyjamas, changing sheets, etc, and patient staying in hospice for life end care.

On thinking about the charities, I believe we need to try and chip in a tad if we can. Next time you are eating that McDonald’s and you are about to have a Mcflurry with it; what’s the cost for the ice cream? Couple of quid? Perhaps think about matching the couple of pounds in a donation, I definitely will.

I’m in my mid fifties and have known people very dear to me that have died by their own choosing at home, in hospital and in a hospice. All very well cared for, and I can see the benefits and down sides of all. For the person that is going to meet his Maker and for those that are left behind. Me? If I mange to get my wish I will not be at home and I will not be a burden on anyone. Let’s hope this works out.

This Saturday we will spring forward

It’s coming up to the final Saturday in March and here in the UK we are all going to lose an hours sleep. We usually associate lack of sleep with things like stress, or going on a night out, or maybe the baby has kept us up crying. But this time we are getting told YOU WILL HAVE ONE HOUR LESS THROUGH THE NIGHT LIKE IT OR NOT. Are most of us going to complain about this? Heck NO! Why, it’s British Summertime. This Saturday we will spring forward.

Since March 2020 for many of us life has been pretty difficult one way or another. We have had many an incident to try us. Covid-19 struck and the world has never been the same again. Worldwide 125 million have been diagnosed with covid, 2.75 million people have died from covid. Countries have been in lockdown, many of us still have restrictions. Businesses closed, lots of folks unable to work or changing their way of working and working from home or making adjustments to their workplaces to ensure the safety of the workforce and customers. Education has been a huge challenge for both students and staff. Everyone in life feeling some sort of pressure in some way or another.

What we have to remember is everything that has been done is in the interest of all of us. When we have been told to stay at home it is for our own good and to help save lives. The vaccine is being rolled out and ticking along nicely. The elderly, frontline workers and the vulnerable were the first to get their injections. Now centres are busy working round the clock making sure we all get immunised.

As the beautiful daffodils dance in the March winds, they bring hope and I believe happiness. Our front garden has many daffodils. As the dogs run up the grass and the sun shines down on them as they pass them you can’t help but feel a warmth in your heart, even on a cool day. Yesterday my sister Hazel and my 5 year old granddaughter Alexandra walked my Labradors. They all had a lovely time. Including me; I maybe wasn’t on the walk, however I so enjoyed hearing about it when they came back and loved to see my delightful labs looking so happy. Tails wagging franticly, bottoms wiggling and big doggie cheesy smiles.

Hazel, Alexandra, Buddy and Bella out for a walk


Hubby Steve came back home and Alexandra was very excited to see her Papa. Out she went and jumped on the lawn tractor. And rode up the garden, her beautiful curly hair naturally blowing back showing her delightful smiling happy face. Afterwards she came striding back to the house, grinning from ear to ear with a bunch of daffodils in her hand from the garden; won’t they look nice in the window Granny, Alexandra said with pride. And how right she is.


Tonight I will be going to bed, and setting any manual clock one hour ahead. Big benefit in UK is daylight saving. Next weekend is Easter. I’ve got a busy week ahead, stoma nurse specialist video call on Monday, big discussion and specialist training to get discussed. Specialised training to get booked in. My nurses will be in on Wednesday for Gastrostomy full service, dressing change and octreotide injection.

Lets hope the weather starts to get warmer, and life will certainly start to look an awful lot brighter for all of us.

Daffodils on the windowsill

Alexandra walking Bella at the back of the house

Memorable month of March

We are only half way into the month of March and already it has been filled with emotion. Despite feeling very unwell, burst balloon in my gastrostomy tube, more district nurse visits than normal at home; I have spent time with all 4 of my siblings, we have pulled together and gave the love back that was showered upon us as we grew up. February was difficult and March became emotional, in this year 2021 I certainly will not forget this month, with so many memories – most definitely a memorable month of March.

Just a few weeks ago my Daddy Bear admitted he wasn’t feeling too good. Mid February, we brought a bed downstairs and the GP came to his home to see him. My sister, Hazel and I were there. The news from the GP wasn’t good and Dad didn’t have long; she reckoned a couple of weeks. The GP arranged for the District Nurses to come in to Dad. They would visit every morning and then assess how often the visits on top. As one of five we arranged a timetable so Dad need never be alone. He had constant care. The team of district nurses were fabulous, their care second to none. The support they offered was outstanding, they brought endless supplies. Our uncomplaining Father they said was a privilege to care for. They also commented on what a superb system we had in place for looking after ‘our Bertie’

The service from the NHS we can not fault. The District nurse thought it would be a good idea to get a hospital bed for Dad, he would be more comfortable on an air Mattress and it would be easier and safer to attend to him with adjustable height and the ability to raise his head, etc. Nurse Wendy telephoned for the bed at 11am, it got delivered at 2pm that day, and the nurses came at 2.20pm to transfer Dad from his own bed to the hospital bed at home. Service with a smile.

When I was home and getting treated by my district nurse, she asked how I was and how I was coping – we had a good chat. In the conversation I mentioned where my Dad lived and the area the District Nurses covered. My nurse knew the nurses personally. She had worked with them and commended their great work, she told me my Pops was in excellent hands and they would take great care of him. And that they certainly did.

The district nurses, Mari and Wendy asked if we would like extra nursing help. This came in the way of Marie curie Nurses. They were amazing. Came in twice a day to care after Dad. Nothing was too much trouble for the delightful angels that came to assist with Dad’s care. However, they not only looked after our Father, it was very apparent they were there for us too.

Knowing Dad didn’t have long left on earth I wanted to treasure every moment I could with him. With my health I’m not normally up and ready to go first thing in the morning. And during current restrictions I have been home and not seeing anyone. However, this situation put a different light on things and gave me an inner strength. I would get up in the morning, take off my night feed, get into the Wetroom and get myself ready to go to see my Dad. Getting washed is one of the most essential exhausting activities for me. Turning on the shower, getting washed, sitting on my stool, looking down at my bright red flushed feet. Getting washed exhausts me and brings on a carcinoid syndrome flush. Right from the tip of my feet, all the way up my legs, over my trunk, up my neck, leaving me with a bright red face. My heart thumping; I can hear it banging in my ears. I lie on the floor till it calms down. Meanwhile my skin begins to dry. I climb up on the stool and get myself dressed. Put on my creams, including my Dundee cream. I go to the sitting room where hubby, Steve has done all my meds. Take them for the morning. Put on my feed. Sit for a rest to get some energy built up. And then all set to go to spend some time with my amazing Dad. My brother Albert will be there in the morning too to meet up with the nurses along with me.

We only got just over one week to care for Dad. It was the most precious time and a privilege to be part of. I thank the lord for blessing me with enough stamina to go to the folks; our family home, and be with Dad in his last days. The love I have for my parents pushed me to go on. After the love, security and safe feeling my parents surrounded me with I would give them it back ten fold.

The love and dependability my parents gave me always made me feel safe at home. This is something I have always strived for. To make sure my children feel safe and secure and that they can always come home. After Dad passed away these words struck a heart string or two:

Sometimes I feel lost

You too?

Remember I love you, and

Love brings you home

Who was our Dad? He was a caring, loving and kind Dad, husband, Grandad, Great Grandad, brother and uncle. He would give us kids his last. For Dad his family is everything. He taught us well, brought us up grand and fair. He worked very hard and built up his own business. We always had a car and we were the first folk in the street to have a tv. Mum was the love of Dads life, they loved to travel and enjoyed many trips abroad, including their beloved Germany, especially the Rhineland. They loved to take trips in the car , taking the grandkids out on adventures. When Mum died Dad gave up driving, he said he no longer had a co pilot to go out on journeys with him. Dad never got over Mum’s death, like me he just learned to live with it. Our folks not only provided a loving secure home for us five, but offered our children, and their children a place to come whenever they needed. They welcomed our friends, Mum chatted to them, offering a sympathetic ear and Dad could be found in the kitchen making a sandwich or ten. When it came to parents I reckon we hit the jackpot.

Dad picking plums at mine

It is going to take me some time to as they say get my mojo back. When alone I find myself thinking of something that reminds me of my very happy childhood, or the assistance as I went to university, having my children, moving home, going into hospital, getting treatment, need I go on… and I am reminded of all the happy times I have had with my folks and then the sudden realisation that this will never happen again. My heart sinks and I am filled with dreaded fear. I have to believe that my folks are at peace, I was well and truly loved and so very privileged to call Helen and Albert my parents.

If I feel upset I am not afraid to cry.

Tears fall for

a reason and

They are

Your

Strength

Not

Weakness

My Mum & Dad at Bellahouston Park, Glasgow

The folks in the hot tub

Mum and Dad’s Diamond Wedding Anniversary

Helen, Albert, Hazel

Brian, Dad, Mum, Me

The Essential District Nurse

Four years ago my house felt somewhat invaded with nursing staff in dark blue uniforms. Very competently carrying out essential duties. Strangers in my home fuelling me with anguish and fear. They came in every other day, assisted with my NG tube and did anything else I required. It took a while before I realised I really did benefit from my essential district nurse.

Four months in, and things were going amazing. I began to realise how much I need them. How valuable they are, not only in the physical nursing department, they are here emotionally and for my family too. The team look after me very well, if I have any sign of “going down hill” they are on the phone to dr or hospital in a flash. As was planned with my treatment plan, I went into hospital had surgery and had a gastrostomy tube fitted.

Five days later I had sepsis, spent 12 weeks in hospital. When I got home, everything was very difficult, and my goodness I was so grateful for the team of district nurses. Evelyn was the one that came the most. My skin on my tummy was red raw, I could hardly walk; to be honest everything felt like a mission. The once strangers dressed in blue had become my saviour. Nothing and I mean nothing was too much trouble. A rutland trolley was brought in to help me walk, my bed was fitted for a mattress elevator, and so much more. My tummy was awful, it bled, the skin kept falling off the dressings were soaked. No sooner were they on and they were drenched. I could see a determination in Evelyn’s eye, we are going to sort this out, she said to me. I so wanted to believe her. I was covered in dressings and looked like I had been shot. Every time the acids leaked out of the hole in my tummy and ran over the lacerations on my skin the pain was so intense. When she came in I was bent over almost falling to my knees trying to get back on to the sofa.

My nurse that became a dog with a bone didn’t stop until she got things ‘right’ for me. The correct barrier, a change in creams, additional creams and a new different dressing. All this every time they are in and what a difference.

For most folks that read my posts they will know I have two labradors, Buddy and Bella. Buddy is my special boy and Bella his wife. They love the nurses visits. As soon as the orange folder was laid out, on best behaviour both labs patiently waited for a nurse to arrive. They will sit perfectly while I get treated by the nurses. Once everything has been completed my baby labradors sit politely and get a dog treat. How happy they are. Tails wagging frantically.

December 2nd 2020 was a sad day in our household. Our ‘dog with a bone’ nurse retired. Evelyn has made a huge impression on us. She has more than helped me and always a willing ear, getting through my sepsis was one of the hardest things I have had to conquer in my life she helped me all the way. When I was in hospital with sepsis, Evelyn phoned the ward 3 times per week for the 12 weeks I was in to check up on my progress. From my husband to my granddaughter, she gave them the time of day, listened and spoke to them. Very often it was just at a time when they needed it most. This lovely nurse is now moving on to a time in her life when she should take some time selflessly for herself. Fingers crossed COVID restrictions will get better and she can get out and do all those wonderful things I wish for her in retirement. As a family unit we will miss nurse Evelyn. She went beyond her call of duty. She had a terrific memory, on sick days she would pick up the phone and ask a GP to come see me, rattle off my date of birth without looking at my folder. One day I smiled at her and asked if she knew my national insurance number; she grinned back and said now that would be telling. She bonded well with my family, was interested in neuroendocrine tumours and carcinoid syndrome. She supported greatly the wonderful support charity I have come to rely on The Ann Edgar Charitable Trust Evelyn participated in our tea party, enjoyed our fundraising music event for net cancer day. She made hundreds of Pom Pom balls to create ziggy zebra. She also was so generous when our youngest went into nursing got him a pile of books.

I know I am in good hands with the team she lead, the strangers in blue who have now became familiar ‘welcome visitors’ attending to my needs. Taking care of me and my gastrostomy, Lavita, administering my injections, doing my dressings, etc.


These hardworking nurses; predominantly now seen by Nicola and Maria make a big difference to my life. They brighten up my day, make me feel safe and secure. I trust them. If you are thinking of going into nursing or are in healthcare or nursing and thinking of working in the community, in particular going into district nursing. I can tell you how valuable and needed you would be. Walking into someone’s house for the first time isn’t always easy, just like when I had the insecurities of the first visits. A couple of visits in and it all gets so much easier. We are all scared of the unknown. That once stranger who enters my home helps alleviate any fear, and deals with more than you know.

Acts of kindness during Covid restrictions


Our new normal way of life can be difficult to live with at times, but we have to remember it is for our own good. People in various areas have different rules. Depending on where you live, what you do for a living and how your health is determines what you can and cannot do. What has made my life so much easier throughout this difficult period are Acts of kindness during Covid restrictions https://www.gov.uk/coronavirus

In the last few months I have sat back and read my social media pages, looked at what my ‘friends’ have written. Some posts have been entertaining and cheered me up, others have been sad and have made me grateful for what I have in my life.

Since the beginning of the restrictions I have been privileged to get thoughtful gifts, letters by post, flowers, texts, telephone calls, emails, FaceTime calls, etc. For this I would like to say thank you.

My most wonderful husband has been an ultimate star throughout. He has worked running his busy business as well as chasing after me, catering to any whim I may have. I try my best to be self sufficient, but I will admit I need by knight in shining armour to take charge in times of need. Steve has done such lovely cheer up things; my most favourite jeans started to get worse for wear, he sought out online not only a pair of my likeable Levi 501 in waist 23, but even managed to get the extra short leg – boy was I beaming. I’m always a freezing cold human bean – so delivered a pair of slippers wool slipper boots with a rubber soul from Denmark Oh my goodness my feet are so warm now.

My children, Tony and Stuart, their other halves and my grandchildren have been ultimate stars. Telephoning, FaceTime calls, texting, sending photos, etc. Nothing better than an excitable FaceTime call telling me all about their day. Love getting the progress news how the university is coming along. Getting texts saying morning Granny how are you? hope you have a good day, love you xxx. Make me feel so loved and warm inside. Video progression of the grandchildren makes me smile, sometimes laugh, always warms my heart and most definitely helps for not getting the visits like we used to.

Faithful Buddy

My sister Hazel sends me letters and cards by post. Its so lovely when I hear the postman drive up our chipped driveway, the crunch of the stone chips as he stops. He get out as usual and puts the mail through the door. Faithful Buddy goes with me to get whats arrived. I recognise my sisters writing, in the envelope is a card and some beautiful photographs of my grandchildren, myself, my lads, and my Dad. She tells me how much she misses coming to see me, our sisterly blethers on the sofa with the dogs at our feet. Some days thats just what we all need to hear. To know how much we are loved.

Cards from Hazel, flowers from Louise

Friday is chat with Jenny day. We met the first day at university and have been firm friends since. I so miss her coming over to visit at the moment with the restrictions being on a tighter leash at the moment. Fingers crossed they will change for the better and she will be able to visit soon. We could meet up outside, but for me its too cold. So for now, texting, whats app and Friday chat day will suffice.

I message and get messages from my sister, Helen and brothers Albert and Brian. We chat regularly keep each other up to date. So miss seeing my Daddy Bear.

One of the grand puppies


On top of the people already mentioned, there are an array of family and friends that have been supportive, giving me a phone, dropping a text, sending a message, etc, etc. Examples include My niece Lindsay sends me the most loving messages and photos of the children, love that girl right over our rainbow. Long time sister pal Liz and I talk on the phone and send each other messages. Sally, little toots from http://www.salspals.co.uk sends the most wonderful cheer up messages and photos of Harley boy. Louise messages me every day, love the photos of Gunner and Harris, received beautiful lilies the other day from her. I miss her popping in for a cuppa and us having a natter. Every morning I get a text message from minister friend Janice. We share other messages throughout the day and a couple of times per month we chat on the phone. Janice is inspirational and caring. Diane and Mark have been keeping me updated with stunning photos of Buddy and Bella’s grand puppies.

Social media is a great point of communication for any of us. Even if it’s just for 10 minutes looking down ones timeline to find out what’s going on in the outside world. I enjoy sharing information and have fun & banter with fellow members, from our Harley Davidson group at The Dunedin Chapter http://Www.dunedinhog.com. I have made great friends at the Chapter. Steve and I have missed out on going to bike events this year, however we are keeping up the chat with our buddies on Facebook I also get support from Scotland’s Net Cancer Charity, http://www.taect.scot for now they offer zoom meetings, online chat, quiz, Facebook page. I really miss seeing my pals, we text each other personally too and catch up on each other’s news. There really isn’t any need to be lonely if you are willing to work at it.

There was an act of kindness that touched my heart at the beginning of August that will stay with me forever. My nurse Evelyn that comes in to the house is an absolute trooper. All the nurses that come to the house are fabulous. My amazing nurses change my dressings, tend to my gastrostomy tube, give injections, flu jabs, my octreotide treatment. Health wise they do anything and everything. One day at the end of July when I was chatting to Evelyn I told her I thought I would look online and see if I could get a washable colourful cotton face mask. We blether about all sorts of things, sometimes it’s good to talk away from health, not about me, just about life, having some fun, ‘the doing things’ . The following week Evelyn came to our house. It was a Wednesday, full service day. Gastrostomy checked, balloon water changed, dressings changed, etc. And then a big beauty of a needle for my octreotide treatment. After everything was done and dusted. Evelyn lifted her jacket under it was a present. Beautifully wrapped and in a lovely little presentation bag. This is for you, she said as she handed me the bag. I eagerly looked in. The most delightful handmade cotton face masks. Matching children and adult ones. And ever so special to me zebra ones. What an absolutely thoughtful gift. Someone who is working full time in such a strained and stressful environment, in these difficult times. Taking time out to make the masks touched me. Made me feel very happy. They are useful, look great and I really like them.

My granddaughter Alex and me in masks made by Evelyn

Since March life has put on a different hat. We have had to learn a new normal. I’m a glass half full gal. I so appreciate the people in life that have made my life so much easier by the generous acts of kindness during Covid restrictions. Please remember when you are sitting on social media watching a video, or your feet up glued to a soap opera on Tv – think about dropping a mate a text, or give them a call just to say hi. Five minutes out of your day can make someone’s a really special one.


































































































































































































































































































































































































































































3 years later and 3 kg lighter

Three years since I have came home from hospital with my peg feed after my sepsis.  It has been a learning curve of a journey with great deal of highs and lows.  I’m very fortunate to have a fantastic support network; the lifesaving NHS staff, including hospital consultants/nurses/dieticians, GP surgery, home visit team, CENT team and my excellent regular community visits I could not do without from my district nurses; amongst other things they deal with my dressings, peg feed and administer my lanreotide, the emotional support they offer is invaluable.

One of the members of the CENT team comes to see me on a regular basis.  I get weighed, we discuss how life has been for me.  How I have been , what meds I’m on and what feeds are going down my peg.  They are always on the end of the phone if I feel the need to talk in between visits or if I have a question/queerie/worry.  A great friendly bunch.

 

r16x9

 

Kat from the CENT team at Edinburgh’s Royal Infirmary came to see me on Monday.  We had a good chat and discussed my feeding regime and the speed of the pump.  I told her the great news that we managed a wee break to Ibiza.  My son Stuart telephoned the airline and told them about my medical condition and that I needed the pump feed and 4 bottles of 500ml per day and 5 bottles of 300mls per day – working out to quite a weight.   The airline agreed to give me free 30 kg baggage there and back.  Certainly cannot complain about that.  After our general discussions I stood on the scales.  Not happy; either of us.  I’m 3kg lighter than when I came home with the peg feed fitted 3 years ago.  I could have cried.  I could tell Kat knew I was disappointed, I couldn’t hide it.  Kat mentioned how well the tpn worked when I was in hospital.   I agreed, that was what saved me and put on the weight when I had my sepsis.  She recommends that she writes to my consultant and let him know and suggest that I get a central line – picc or hickman and get home tpn as well as my peg.   Got my cardiologist in December and see my consultant after the year; will discuss this weightloss and eating regime then.

 

  • Scales on white background. Isolated 3D image

Bye Lavita you have been a lifesaver

Its the start of the weekend I’m in my own home and boy am I glad to be so.  A few weeks ago I was in hospital with yet another infection.   It started of I wasn’t feeling too good, said to my nurse I felt horrid, my tummy began to swell, my temp rose, the leakage that came out of around my peg site increased, the smell began to get really offensive.  My energy became non existent.  I visited my GP, within 2 hours I was in hospital.  Before I knew it connected to IV drip and on IV antibiotics.  I was feeling absolutely awful, could hardly put one foot in front of the other.  The familiar face of SPB came to my bed.  He is the surgeon that put my gastrostomy tube in two years ago.  Lavita has been a lifesaver and fed me on demand.  After blood tests, X-rays, scans and careful discussion with the surgeon and the wonderful dieticians Bev and Marion it was decided it was time to change the tube.

 

 

G-Tube_medium

 

 

Im not going to lie, I was bloody nervous at the thought of getting lavita taken out and another tube put in.  The nurse came to tell me that I was getting my tube changed later that day.  just after lunch I could hear a familiar Irish mans voice outside my bedroom.  A few minutes later the doctor popped his head round the door, remember me Elizabeth? He said.  How could I forget.  He was the doctor that took out my jej extension.  I have faith in him.  My nervousness left me and I felt calm.  How could I forget, I replied.  He changed my gastrostomy tube.  I’m not saying it was plain sailing.   Mainly due to the infection,  I had a lot of tummy pain and there was quite a lot of discharge and blood. There was a lot of tugging and pulling.  The burning gastric acid from my stomach was trickling down my skin, it hurt like hell.  He mopped it up very quickly.  The saliva was running down my gums, yet my lips and mouth felt dry.  We agreed that a larger circumference tube would go in this time, in the hope that there will be less leakage.    We have moved up a size and a half and its fitted perfectly.    I was in hospital for 5 days, and got well looked after, support from dieticians, nursing staff, and doctors fantastic.

Its took me a while to get on my feet since getting out of hospital.    I have been very tired, in fact super exhausted to be exact.    Regular things have taken a back seat and gosh have I missed it all.  In particular not having the granddaughters at the house as often.   A couple of weeks before I went into the hospital our house was full of laughter of two beautiful granddaughter’s.  Our 17 month old princess was running up and down the hall saying Papa Papa, Broom Broom – she is desperate to go sit on her grandfather’s motorcycle.  Grace calls from the kitchen Bella Boo to one of our labs.   The girls are away on a two week holiday at the seaside.  Gosh I miss their visits.

 

 

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Since I have been home, I am getting my regular visits from my nurses.  Getting my tube maintained,  The balloon water changed. My dressings changed.  Working hard on building up the old stamina 🙂

The one important thing that needs to be done next is find a name for my new tube.  Its a balloon gastrostomy that feeds me through a pump directly into my tummy.  Im attached to the feed 20 hours out of 24 every day.  This prevents me having a hypo and helps me maintain my weight.  My wonderful hubby has bought me a lovely new Michael Kors leather backpack to put my pump in, it means I can be attached to my feed, carry it on my back and still be ‘fashionable’ as well as carry other essentials with me.

If you have any suggestion of a name for my new tube, please comment.  All suggestions, comments welcome.

 

Lanreotide Injection with a special delivery

As usual the run up to my injection was met with even more trips to the bathroom.  Bowels  working in overdrive.  The day my nurse suggested I get incontinence pads delivered, I was a tad reserved, now I couldn’t do without them.  Before I started getting the jab every three weeks I had total uncontrollable running to the loo, more than ten times per day every day.  Now its greatly reduced.  On a really good day, its three times a day, the week before my injection is due I’m met with a rapid increase of visits to the little room.   This week as well as my usual company of my companion dog, Buddy.  We had Bella getting up with us too.  Bella is our 4 year old labrador retriever.  Who is heavily pregnant.  And lets just say the puppies were moving around in a way that she couldn’t hold the loo in for too long.  Poor girl.

The night before my injection Bella starts getting even more restless, comes to me and gives me a big hug, goes into her large birthing box bed and starts digging the bed to make it comfortable.  She is going to go into labour.  Boy its going to be a long night.  Bella starts to pant and shows all signs of first stage labour and then second stage.

At 0045am the first pup is born a little girl.  She is a perfect fox red labrador retriever.  Just like her daddy.  Bella is so good, bites through the sack, cleans the little one up and welcomes her into the world.  I give Bella a reassuring cuddle.  And make sure the little and Bella are ok.  They are.  I take a photograph of them,  I tell Steve first of course, and then send proud messages of the exciting first birth.  My friend Louise lives three miles from me and asks if she can come and observe Bella giving birth and be of any assistance to me.  She is there for the rest of the litter delivery.

 

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By 0725am there are 8 puppies born into the world.   Steve comes in to see Bella and is there for pup number 9 and 10.  Bella feeds the puppies and a big rest.  Despite being on cloud nine and so happy I’m shattered and feel like I can hardly put one foot in front of the  other. I get myself washed and dressed my nurse will be here this morning to check over my gastrostomy tube, change my dressing, and give me my lanreotide injection.

10am my nurse Evelyn walks through the door.  At first Bella barks, only until she realises who it is.   Evelyn pops her head into the room to view the pups, and then walks along the hall.  She scrubs up and then does all the needful for me.  As my faithful labrador retriever, Buddy, sits by my side and watches everything my nurse does.  I get ready for this painful deed to get done.   Tummy first I think she says.  The soiled dressing taken off, site all cleaned, helan cream and cavilon applied.  And then my nice new clean dressing put on, carefully with tape not to touch my skin and cause a reaction.  Evelyn  then picks up my lanreotide injection.  I get this every 21 days.  Its your left side this time she says as I slip down my knickers.  I then have to work out which way to lie so evelyn can inject my left buttock, I have enough problems with this at the best of times, put lack of sleep into the mixture and we have a recipe for disaster.  I was this way and that way on the sofa. Evelyn said, just a minute and listen to me and then lie down like I tell you,  it worked a treat.  As she administered the injection of lantreotide buddy sat a few feet away watching all, making sure all was good.  Which it was.  All done.    Everything put in the sharps box.  A good discussion between me and my nurse, as always.  Notes written.

 

 

 

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Steve calls my name along the hall.  I take myself along inviting my super nurse with me.  Bella is having a contraction, and as in previous seems to want me to work with her as a team.  I rub her tummy and reassure her that I am by her side.  Come on Bella, one big push for mummy, I say to her.  I can see her body contracting, the pain in her eyes.  My lovely dog looks so tired.  I can see a little tail appearing and a foot, one last push Baby belle.  And so she did.  Out comes the most beautiful little puppy.  Puppy number 11.  Bella is exhausted, I hold it while Bella bites the chord, cleans him vigorously, suddenly a little squeal comes from the puppy.  Bella wags her tail.  He is perfect and she is happy.   Puppy number 11 was born at 1118am.   What a team, you both make.  Evelyn says to me.  I feel very proud.  Bella gave birth to 8 boys and 3 girls.  I’m so pleased that things have gone well.  My dog is well, her puppies are healthy and of a good size.  Buddy, the daddy, watches on eagerly, I know he is desperate to play with the little fella’s.

My nurse managed to see the puppy being born, she got more than she bargained for on her home visits for this Thursday.   I certainly do not doubt that she has eventful days but I guess she doesn’t have puppies making an entrance into the world very often.

 

A wee bit of home assessment from my nurse

One thing and another its been a busy week.  Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into me 20 hours per day, I still have an underweight BMI and haven’t gained an ounce.   I’ve got that bloody awful feeling that I need a kick up the ass, I could lie on the floor and curl up in a ball and sleep.  The Doc was also very concerned with the fact that I have difficulty with once of the most important things – getting washed.  Our shower is over the bath, between my poor co-ordination, spontaneous hy0pogleamia, the pain I get and my gastrostomy tube climbing over the bath has caused many accidents: resulting in severe bruising and a hurt pride.  Long and short of my GP visit: bloods taken, my steroid replacements have been increased for the time being, I have to visit her again soon.  We need to get the bathroom sorted.

Its lanreotide week and boy do I know it.  The bowels are flowing more than normal and for the third time the urgency at 3am disturbs my poor sleeping hubby.  Buddy sits quietly at my feet, replacing the lovely warm slippers that I had no time to put on.

 

 

 

Evelyn, one of the nurses comes in on Thursday morning.  The dogs are happy to see her.  They know the routine and watch all that is going on.  She looks at the two of them and says well you will have a wee wait on your ‘doggy mars bar’ today.  Got a lot to get through with your Mummy.  Gastrostomy  site tackled first.  Dressing taken off, all cleaned, the necessary done, new dressing on.  Skin checked and other issues addressed.  Then onto my lovely injection of lanreotide.  It may be a big pain in the butt and cost the NHS a small fortune but it a godsend to me.  My diahrea has reduced from over ten times a day to 3.  And those awful flushes have greatly reduced.  The run up to the injection the symptoms get more problematic but nothing like before I started getting it.  I really wish it had a magic formula and helped with the malabsorption.  Injection in, all sharps in appropriate box etc.

Evelyn takes a pew.  Pulls out a white folder and talks to Steve and I.  Remember last week I asked you some questions and you did well, she said.  That was a base line for us for your mental awareness.  Steve made an off the cuff funny remark and we laughed.  Yes you can only go downhill she said.   No onto some physical questions.  It was all very thorough.  Asking me questions such as can I roll over in bed.  Do I need help with washing and showering.  A great deal of emphasis on my meds, eating, all the personal issues such as my bowel habits, aids I need and use, what I can manage and what I CAN’T.  As always Evelyn was super efficient; making me feel so comfortable and at ease and still managing to get all the appropriate essential information that has to get detailed down.    The nurse is an angel she goes above the call of duty.

It was good Steve was here for all the discussion.  Evelyn already knows how much I rely on him and how difficult things are such as showering, setting up feeds, getting my medication organised – we didn’t need to go into the nitty gritty.

The outcome; I’m an at risk patient.  BMI far too low.  At risk of falls.  Has pain.  Risk of infection.  I dolly daydream into a daze, I furniture walk without realising it.  The one thing I certainly cannot do is get up of the floor on my own. Give me a piece of furniture or better still my devoted strong man – Steve.   I love this man 💕💕

Dedication of my nurse & new dressings

Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube.  After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage.  It is apparent that the surrounding area is never going to totally heal.  The health professionals have tried their best.  I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings.  My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore.  After the trial and error of creams the best one and the one to stay is the cavilon lollipops.  They act as a barrier, and its a wonderful life saver I can tell you.  As for the dressings, well many have been tried and tested.  At one point I looked like I had been shot.  I was covered from my breasts to my waist.  The nurse on the ward thought it best to keep it all sealed.  This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast,  dressings, and good old fashioned crepe bandage.  The dressing that worked was the foam dressing.  A hole was cut in the dressing and it was wrapped round my peg.  The only trouble with this is the amount I leak out.  The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.

 

 

My nurse, Evelyn, that comes in and changes my dressing at home noticed this.  Evelyn is a dog with a bone.  One day she came in with a booklet and a different dressing.

Do you fancy giving this a go?  She asked me. Can only give it a try was my answer.

So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply  it.    This dressing is designed to absorb the leakage.  And guess what – it does it so well 🙂   I have even noticed a reduction in the odour.  The combination of the barrier and the new dressings, my skin is much improved.   Its far from perfect and it will always leak.  But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful.  Cant see me  shifting from the Keramax dressings in a hurry.  And as for my nurse well she is a star.