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

Thankful for my smartphone

As we approach the latter months of the year I have become more and more grateful for technology. In particular my Apple laptop, smartphone and iPad. Whether, it has been a FaceTime GP call, a hospital appointment or a chat with a family member, my iPhone has been invaluable. When the lump on my shoulder caused my home nurse concern, first a photo taken from my phone, emailed to my GP, then a FaceTime call so she could see it, then decided it did warrant a GP visit and examination. Fabulous camera on the phone, such great photos you get from it. I’m so Thankful for my smartphone

I have my smartphone linked to my MacBook and my iPad. When I take a photo or put an entry in the diary on the phone it goes into both the laptop and the iPad too. I love to take photographs. Photography is a great passion of mine. One of the most relaxing activities for me is to pull out my Nikon camera and shoot some images. However, if I am standing at the back of the house watching my beautiful 4 year old granddaughter and our labradors taking my phone out of my pocket at an opportune moment to capture a memory. This week is my octreotide treatment week, belt and braces, it’s in the diary in my phone; alarm set on on phone to go off 40 minutes before my nurse is due, so I can take it out of the fridge. It’s much easier to administer and more comfortable if it’s not too cold. Nothing worse than a freezing cold substance going into your hip area. I don’t have much fat or muscle on me as it is. My make up is pretty bony now and the thick needles are getting kinda sore as they go in. But what I have to remember is no pain no gain. If it wasn’t for these injections I probably wouldn’t be here today. They reduce the rate of bowel motions incredibly, I no longer look like a Ribena kid all day long and its pretty well proven they slow down the growth of net cancer. All in all bloody good job I would say. And most certainly worth the pain in the ass they give you.


Buddy and Bella with Alexandra

Since the middle of March life has became very different. The arrival of Covid-19. Lockdown, restrictions to the way we live, finding a new normal. For the time being at least.

I use my phone and iPad to have chats with my family and friends. Not only your traditional blether but the most fabulous video calls. We laugh, sing, play games; a telephone call has never been so much fun. On my laptop and iPad I keep in touch with friends from my support group, TAECT we have general chats, quiz days, information talks. I also keep in touch with my motorcycle friends at The Dunedin Chapter. To take part in quizzes, talks, chats, etc we use Zoom

Technology has been my lifeline over the last seven months. I haven’t had many visitors. I have only visited my dad on two occasions since March. Going out of my front door doesn’t happen very often and seeing people in the flesh is something of a novelty at the moment. Ive taken to talking to anything that looks interested and stands still long enough to listen; for instance yesterday morning I was sitting on the sofa wrestling with my slippers, the table lamp to my left was my conversation buddy, mind you I got the right kind of answers, I guess he agreed with me, I got a silent reply I took this as an acknowledgement of approval.

My other method of keeping in touch with family and friends is social media platforms. Linkden Twitter, Facebook and Instagram are the ones I use. Fabulous for keeping in touch, sharing information, posting articles, photos, etc. I use the messenger to chat. I also use WhatsApp. A good way of communicating with chums. We share stories, snaps, etc. A great way of cheering each other up especially when the mood is low.

Whilst my technology is great for communication and keeping me in touch with the outside world whilst I am shielding. The laptop, iPad and phone also have been used in more than I thought they would be.

During these difficult times many banks have closed their doors. Leaving many of us to online bank more than we used to. Me, I have banked online for what feels like a lifetime. My health before covid forced me to make changes, so I guess I have found it fairly easy to adapt. I use my laptop, iPad and smartphone to bank. However, I have to admit the app on the smartphone for the Natwest Bank https://personal.natwest.com/personal.html is so easy and convenient to use.

I use my Phone to order shopping, order my prescriptions from the GP, order the feed needed for the month from Nutricia to keep me going with through the gastrostomy tube.

Checking emails and going online is so easy with my smartphone. One click and Im there. Its so easy to download apps. https://www.apple.com/uk/ios/app-store/ There are so many different apps, something for everyone, from games to weather. Have a look, and give something new a try. It really does brighten your day.

When I first got a mobile telephone it was for work, it was to answer calls and check up on how MY patients were doing. That feels like another lifetime ago. Now I use my smartphone as a tool, to go on the internet, check my emails, send messages, take photographs, occasionally let my granddaughter play a game, oh and of course make a telephone call.

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 💕💕

Back home and boy does it feel good

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.

 

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