Think zebra not horse

Most people in life know someone with cancer. Or are knowledgable about signs or symptoms of some kind of cancer. However the rarer less known conditions need the help of Doctors, writers, patients, etc to promote awareness to get their name out there and help others know what to look for. “Doctors are taught ‘when you hear hoofbeats, think horses not zebras,’ meaning a doctor should first think about what is a more common and potentially more likely—diagnosis. In oncology zebras have to be thought about. If a clinician isn’t as familiar with rare conditions, they may spend too much time looking for the proverbial horses. One such rare disease is Neuroendocrine Cancer and carcinoid syndrome. November 10th is Net Cancer Day. For the patient and the diagnosis it is all so important for the doctor in the big important Think zebra not horse.

Getting a diagnosis of Net Cancer can be difficult. It often goes misdiagnosed and the diagnosis is delayed and very often a person is told they have the cancer once it has spread to other organs and is incurable.

Living with Nets and carcinoid syndrome isn’t always easy. There are days it can really take over your life and just getting out of bed is a real struggle. However, there are great treatments and support networks out there to help you on your way. Looking after your body, eating the right things, meeting up with people and talking can all help in your cancer journey. I certainly know meeting up with likeminded people from The Ann Edgar Charitable Trust and sharing experiences has been a lifesaver. Making super friends along the way, the only down side is losing some dear ones to this damn condition.

On this eve of Net Cancer Day I think of the amazing buddies I have made since the day I was told I had carcinoid syndrome. I keep up with and chat to friends we share what’s going on in our medical life. I have lost and miss some lovely zebra, including Ann, Didi, Pam, Janny, Margaret, Becky, Norman, Linda. Celebrity zebra have included Audrey Hepburn, Steve Jobs, Aretha Franklin.

Audrey Hepburn’s son did a newspaper interview – you can view it HERE

Common symptoms of NETs include:

  • Flushing (redness, warmth) in the face or neck without sweating.
  • Diarrhea, including at nighttime.
  • Shortness of breath, rapid heartbeat/palpitations.
  • High blood pressure.
  • Fatigue, weakness.
  • Abdominal pain, cramping, feeling of fullness.
  • Unexplained weight gain or loss.
  • Wheezing, coughing

The symptoms of a neuroendocrine tumour depend on where in the body it is and what hormones it produces.

Diagnosing neuroendocrine tumours

Many tests can be used to diagnose neuroendocrine tumours, including blood tests, urine tests, scans and a biopsy  (where a small tissue sample is taken for closer examination).

Types of scans used include:

Treating Net Cancer and Carcinoid Syndrome

Every patient has their treatment plan tailor-made for them. No one person is exactly the same. They may have the same germ cell. Could have been diagnosed with almost literally the same diagnosis – it does not mean the treatment will be the same. All our bodies react differently, we give off different hormones, etc. And to be honest we may not have the same attitude to the consultants conversation in the room.

Treatments Include:

For some people surgery is an option.

Somatostatin Analogues may be used to help control the secretion of hormones if abnormal levels are being produced

Embolisation Treatment that blocks the blood supply using chemotherapy, radiotherapy or radiofrequency ablation

Treatments used for some Inoperable and metastatic cancer:

Everolimus is taken as a tablet, sunitinib is taken as a capsule and lutetium is given into a vein.

Let’s Talk About Nets

What has made me smile today?

Over the last few months life has certainly had its up and downs. As usual getting the usual carcinoid syndrome treatment. Not feeling the best at times and all that comes with it. However on the plus note covid restrictions have been a lot better, I have seen my family much more, Steve has been on the Harley-Davison®. We managed an evening out to see Del Amitri live in Edinburgh, at the Queens Hall. Our youngest son graduated from university. I got head hunted for a job from a very reputable company. We have a lot to be grateful for. As I was sitting working on my computer my phone gave a familiar bing. I looked over, it was letting me know my screen time was down. Most likely because I have been writing more this week, and I have gave the social media platform Facebook a wider berth over the last few weeks; mainly due to seeing the same old…… Although I have to confess I did see a few things on it today that made me smile, and other things that put me off…… on reading down the page I thought what has made me smile today?

Firstly waking up and being alive makes me smile. Every day is a bonus. I love where I live and who I live with. I open the curtains, roll up the blind in the morning, look out my bedroom window and the view of my back garden is a huge field where I enjoy walking my loyal Labrador Retrievers.

Buddy sitting at the front door

My boy Buddy is my assistance dog. He takes great care of me. Knows when my glucose levels drop. When my heart is misbehaving. He was such a great chap and tapped my nurse on the knee on Wednesday when she was attending to me, I asked her to check her blood sugar level it was sitting at 3.9 – he knew she was hungry.

My family not only make me smile they make me laugh. We have fabulous times together. Play old fashioned games, sit and talk, sing together, dance in the house and most importantly love each other.

Writing keeps me sane as well as makes me smile. Jotting down in a diary, keeping a journal, and writing for a living. I simply love it.

Listening to music most definitely made me smile today. Whether it is music on Apple Music, reminiscing about times gone by, Steve strumming his Martin guitar and beautifully singing along or Alexandra practicing her heart out on the violin or getting a guitar lesson from her Grandad. All those tunes give me such a warm feeling inside. It made me remember about that time……well will keep this one to myself…….

Remembering yesterday, listening to stories about the trip out pumpkin picking and dancing around the house and face painting.

Has anything made you smile today?

A grand day out at Newhailes House

It was the bank holiday weekend and the sun was shining. For more than a year I could only fantasise of meeting up with friends or going out to events with fairly large numbers. The run up to the weekend was fairly difficult, my gastrostomy site was leaking, the pain set in and my skin became red raw. By Wednesday, treatment day with my nurses I was needing a swab taken and had a bit of a temperature. GP phoned me at 7.45am on Thursday morning to let me know antibiotics were ready for me. Woo hoo, what kind of person gets excited about antibiotics. One that wants to feel better. This weekend would normally be TITG® – our annual bike rally hosted by The Dunedin Chapter in Aviemore however it was cancelled due to Covid. Fortunately there was still time for fun and an alternative weekend in store for us down here in East Lothian. It still included some time with some Chapter members and the Harley – on Sunday I had a grand day out at Newhailes House.

As Alexandra and I arrived at Musselburgh the honest toon was looking very busy. Families walking in the direction of the estate of Newhailes House. This Sunday was a special day, there was an open day inviting members of the public. It was mainly a classic car event, with other super side lines. Dunedin had the Harley-Davidson® motorcycles, there were some sports bikes too, the fire brigade were there, the police, a fantastic array of stalls, and of course amazing classic cars. Plenty to keep us occupied.

Alexandra loves this tractor

As we walked into the grounds of the estate we could hear a very familiar sound. The roar of her Grandfather’s Fatboy. Parked in a line – the Dunedin Chapter Members and their Harley Davidson® Motorcycles. There was an eager bunch of kids waiting to sit on the bikes, lots of smiling faces. As we walked up towards Fattie we saw Steve giving a demonstration to a happy lad.

Alex and I walked round, thoroughly enjoyed the sights. Totally loved the cars, bikes, stalls, etc. Soaked in the atmosphere. Sat on motorbikes, looked at beautiful classic cars, clambered on tractors, enthusiastically stood in the long queue for the sit in the fire engine. We had a fabulous day all on our doorstep. I’m sure the Dunedin members enjoyed their day.



Fabulous afternoon at the dog park

My Labradors are content at our holding. Buddy never really leaves my side, goes wherever I go, literally with me into the bathroom, etc. The clever clogs knows when my unusual body is playing up and despite having my peg feed on my blood sugars drop and he comes to my assistance. He knows when my heart is banging so hard I can feel it pounding. Buddy is a wonderful assistance dog to me, my right hand boy. He wanders around the house, pads up and down the long hall. If I was to put a pedometer on him I could imagine his step count each day just in the house, never mind the garden would be pretty high. Bella gets a free reign to. They love their runs in the back field, especially with granddaughter Alexandra. However, when my sister Hazel said she had booked www.unleasheddogparks.co.uk for Buddy, Bella and her young border collie Jed I never anticipated what was in store – a fabulous afternoon at the dog park

Unleashed dog park is only literally a three minute drive from our home in Boggs Holdings, Pencaitland. It provides a wonderful safe environment to let your dog run free and get plenty of exercise. There are great quality equipment for the dogs to play on, a sensory area, a sandpit.

The massive bonus for us is you drive your car into the field you will be using. With my health the way it is, I’m certainly not up to walking my babies a long walk. Places like the dog park in my area are just perfect for a treat. They enjoy running around as they do on our wide open fields but with the added extras of the sensory garden, the equipment to climb on. A fabulous and safe place to train or treat your pampered pouch.


Buddy on his favourite ramp


My only disappointment was photography is a huge passion of mine and I neglected to take my Nikon camera with me I took all my photos on my phone. Don’t get me wrong I was really pleased with the results on my Apple

Bella eager to get going, but will pause for a photo if you bribe her 😝

“Look at me go”, says Border Collie, Jed

Bella ready for an adventure

Since March 2020 life has been a funny old world for us all. The arrival of Coronavirus and the devastating effects it has had on us. Many of us have had life changing situations and learned to live with a new normal. We have lost people we love, heartbreakingly not been able to be with them in their hour of need. Staff have courageously battled on through conditions many have never seen before. For all the dedication of workers, volunteers, families, friends, loved ones, etc I thank you. Without the help and love of others it’s difficult to see the light at the end of the tunnel.

Now sitting writing this on this Thursday morning in April 2021 in my sitting room, I feel a whole lot more positive than I did this time last year. The vaccine is going well. Yes we are concerned about blood clots, but that’s a whole different story and I believe the benefits outweigh the risks. The restrictions are lessening here in Scotland.

My District Nurse, Jennifer was in yesterday she commented how peaceful and relaxing our home is. I told her yes with my carcinoid syndrome fatigue is a huge problem as well as nocturnal diarrhoea so quietly listening to music and writing is relaxing and helps a great deal. Buddy and Bella help too. Snuggling up on the sofa with my Labradors can be just what the Doctor ordered.

The stressful year has affected us all. For me the best way I cope is having my glass half full not empty. Taking the dogs to the dog park such as Unleashed helps blow away the cobwebs. It benefits both the human beans and the K9s.

If you haven’t been to a dog park before and you are swithering, give it a try, Buddy is ten years old, Bella eight and my sister’s border collie, Jed is only nine months. They all had an amazing time. Got home tired out and I’m sure they are looking forward to their next visit.

Leaking gastrostomy tube

Lavita has been my lifesaver. For those who don’t know Lavita is the name of my gastrostomy feeding tube. Artificial feeding is a way of life for me; feeding tubes, syringes, dressings, huge deliveries of feed by my lovely drivers from Nutricia, etc. For the last few months I have been having a bother with my tube, my nurses have been coming in, giving the usual service, changing water in balloon, etc. However, I have had a lot of leakage (losing water from my balloon ) I have been in an awful lot of pain and three times the balloon has burst. Lavita has been a leaking gastrostomy tube.

Last week I went for a ct scan with contrast at the request of my net consultant. He is worried because my 5hiaa is elevated, I’ve lost weight, been getting a fair few infections and I haven’t been feeling well at all.

This week I have been at the hospital to see one of my consultants. He was able to speak to me about my ct scan and finally shed light on why I have been loosing water every week. And perhaps why I have been in so much pain. He asked me to get onto the couch, he Kindly helped me up, he assisted me off with my shoes, I couldn’t bend down comfortably from the couch and get my shoes off, he could see that so bent down and took my shoes off for me.

I lay flat on the couch and he said Mark requested the CT scan for a totally different reason the problem we are going to discuss and he started to explain what the radiologist reported on the CT scan. The report stated the balloon should be sitting in my stomach, however it is sitting in my jejunum. The doctor decided he would reposition it there and then. Are you ok? he said, I nodded, my tummy was aching. Just breathe in he said to me, and I will get this adjusted and make you more comfortable. He gave a very firm tug on the tube and turned it around, he pushed it into place and gently twisted it round. He pulled the disc tight up to my skin and said the tube needed to be at 4cm. And to check and adjust it several times per day. He is hoping now that he has pulled the balloon back up into my stomach that I won’t leak water any where as much as I have been. Some weeks, my nurse puts 20mls of water in when it comes to the water change there is only 7mls of water in the balloon.

My gastrostomy balloon had fallen into my jejunum.

I got myself decent, he helped me off the couch and onto the chair beside his desk. We now had time to discus what he did, how my gastrostomy tube looked on the scan and how I was feeling. How am I feeling? rubbish, hope to feel better soon….. My doctor did me a drawing of how the tube should be and how mine was when I got the scan. He told me I should get blood tests today; the nurses with a bit of a fight took my blood.

Today I got an email from my other consultant; my endocrinologist; a fantastic net specialist. The one that ordered the CT Scan. He said he was shocked when he read the report that my balloon of my gastrostomy tube was in my jejunum. He asked how I was feeling and said he was relieved that I had seen my other consultant Alan and that he had repositioned it. The prof said he is hoping that the leakage will slow down now that I have had my tube pulled up. The prof is amazing, he is caring and always makes sure I am pleased with the service I am getting. He helped set up the Charity/support group, http://www.taect.scot that I now rely on and admire immensely. Gives up his Sunday for Net Cancer Day for an information lecture. All the patients and staff talk very highly of him.

I feel privileged to have very caring consultants that look after me so well. Especially take time to email me out of hours, or give me a call and ask how I am. Thats what I call service.

The Drawing by my consultant

Hurrah 😀 For Dunedin Chapter

As most of my regular readers, friends and family know Steve and I are proud owners of a Harley Davidson motorcycle. For the last year we have been very happy members of The Dunedin Chapter http://www.dunedinhog.com

 


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I mentioned the motorcycle club in a previous post. All folks have welcomed us with open arms into the body of the Kirk. For us it’s been a lifesaver. Gave Steve and I new people to meet, places to go. Steve, can go out ride the bike Without me and meet up with others, and when I’m up to it we go out together and boy what fun we have.

The Chapter isn’t all about riding bikes mind you. They do a great deal of charity work. Easter egg runs, Santa runs, fundraising for The sick kids, Kats Mission, need I go on. I am very proud to be a member.

TAECT promotes awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. Have regular support meet ups all over Scotland. Health information days with drs and nurses giving up their time to offer advice.

Last weekend the chapter had a dinner dance in Grangemouth. Edinburgh Harley Davidson kindly donated a couple of leather jackets and many members donated raffle prizes. On the night, Ben and Hilary went round the room with raffle tickets to sell to us party members. Drew the raffle and there were many happy faces. A very big well done to all the folks who donated and another massive well done to members for buying raffle tickets. £830 was raised for charity.

The Chapter decided to donate the £830 to one charity. That charity is one that has given me so much support, particularly over the last couple of years. Without their kindness and support at times I would have been quite lost and lonely. This charity is Scotland’s only neuroendocrine cancer charity – The Ann Edgar Charitable Trust. http://www.taect.scot

 

As most of you will know TAECT works very hard at promoting awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. The charity has many regular support meet ups all over Scotland. Information days take place with consultants, oncologists, drs, nurses giving talks and offering advice.

 

I would like to say a big thanks to the two groups I belong for different reasons. However, both make me feel very welcome and let me be ME, no one notices my gastrostomy tube, makes comments about me not eating, etc. Its wonderful. Riding on the back of a harley davidson with a peg feed isn’t always the easiest. But we manage. Life is for living and I want to enjoy and spend as much time as I can with my wonderful hubby and hear the roar of that Harley Davidson Fat Boy ………… nothing better

 

 

 

 

 

 

 

 

Net Cancer Day

Yesterday was November 10th. On the Cancer Calendar this is World Net Cancer Day. In Edinburgh the Scottish Charity, The Ann Edgar Charitable Trust hosted a forum at The Novahotel. And what a great informative event it was.

After being offered a beautiful buffet lunch, chance to meet other patients and folk interested in nets David Drummond, chairman and partner of the late Ann Edgar opened the show with a warm welcome. We were then given presentations from great speakers:

NET specialists from throughout the UK gave up their Sunday to give presentations. Offered their expertise and answered questions to patients, families, friends and people generally interested in NETS.

 

 

 

Margaret Boe – The Ann Edgar Charitable Trust (TAECT) . Trustee and wife of Net Cancer Patient, Norman Boe. Margaret is retiring and handing over the baton to Priscilla Fernandez.

 

Margaret Boe

Katie Gibson – NET CNS at Western General Hospital, Edinburgh, Talking about patient and carer support in Scotland

Lucy Dornan – NET CNS at Beatson Oncology, Glasgow. Talking about PRRT programme in Scotland.

Lucy Dornan from Beatson talks PRRT

 

Nikki Jervis – NET Patient Foundation. Talking about patient wellbeing.

 

Nikki Jervis

 

Professor Mark Strachan – Endocrinologist, Net Specialist, Western General Hospital, Edinburgh. Talking about whats new in NETs.

 

Professor Mark Strachan

Dr Lucy Wall – Clinical Oncologist, Western General Hospital, Edinburgh. Vitamin Research Project. Results to be presented in UKINETs.

Mark Strachan and Lucy Wall set up the first NET clinic in Edinburgh 14 years ago. Fourteen years since the first Net patient walked through the doors, with a great deal of progression since then. All for the good of course.

On the way to the event I had a sneaky look at my smart phone. An Apple I Phone – I have stayed loyal to Apple, the great Steve Jobs lost his battle with NET Cancer in October 2011. As I looked at my twitter feed I saw my friend Kath had promoted awareness of the disease in her local paper. Well done girl. I can relate to the piece so well, as I am sure many people with a NET diagnosis can . If you would like to read Kath’s feature please click on the link

https://www.stokesentinel.co.uk/news/stoke-on-trent-news/i-feel-like-im-sitting-3517787?fbclid=IwAR2HyssDuZs9hekMPjfDhlcWDtzBIlf5KBA9TSTgdt3IfXXD40-RunU9K3Q

 

On entering the hotel I turned my phone off, no interruptions. However, at the coffee break I turned on my phone. A couple of messages. From each of my sons. Both checking up on their old folks and letting us know they are doing ok. One of the texts came with a photo of Granddaughter, Alexandra – she found her Daddy’s scalextric at our house and was loving playing with it. Knowing our boys were thinking of us warmed my heart.

 

Our Alexandra finds Daddy’s Scalextric

 

As we were packing up to leave we got in the car and I turned my phone back on. Stuart and Alexandra called to say Alexandra was going back home and we would see here Thursday. Her Wee voice echoed in our car can you hear me Granny? When I let know I could she blethered away. She said I helped my Daddy put your lights up – they are very bright. Then she said I love you Granny and I love you papa see you after nursery xxxx

 

10th November Approaching……

For Me November has always been a fairly memorable month. I have a brother with a birthday at the beginning of the month and a sister with a birthday at the end of the month. The last day of the November we celebrate the Patron of our country – St Andrews Day. Guy Fawkes night; 5th November is a special night on our calendar – Steve and I got engaged in 1984, what a wonderful night that was. Fireworks at my parents and then a trip to Edinburgh with Steve and some university friends.

All of these dates are still in the diary, special to me, with some others added. And now there is one anniversary date that is noted worldwide. The date is November 10th every year. Its NET Cancer Day. Aiming at promoting awareness. Folks all over the world raise awareness in different ways.

Me personally, I have organised, with the help of friends, a tea party and a music night. Both events were on the weekend of the NET Cancer Day and raised money for The Ann Edgar Charitable Trust. Three years ago I did some something myself, just simply smiled every day for 21 days and asked folks to donate something, even if it was a penny. My consultant, Prof Mark Strachan, the fantastic late Linda Story and myself did a radio interview, fairly lengthy – raising awareness two years ago. Many people have coffee days – lets talk about nets.

This year, 2019 – November 2019 is a Sunday and I’m looking forward to going to The NET Forum organised by The Ann Edgar Charitable Trust in Edinburgh. There will be talks on offer from Net Specialists; Consultant, oncologist, Net Nurse. Charity Trustees. Information will include PRRT Information, Patient and Carer Support, whats New in Nets?, Relaxation.

Forums allow others to get together, whether its other patients, their family or friends, health professionals and people generally interested in finding out about NET Cancer. You get a chance to ask questions about symptoms, treatments, etc, and meet other people with the same rare condition. Its absolutely wonderful that health professionals are willing to give up their Sunday to share this time with us folks that want to go to the forum. Its great to see passion in the doctors and nurses outside the hospital. It makes me very proud and confident in our NHS.

For anyone thats interested in finding out more about The Ann Edgar Trust. You can look them up, at http://www.taect.scot They really are a good support network, our monthly net natter meet ups, chat on facebook. And at times we get together and do something together outwith the meeting. It really does help turn that frown upside down.

What and who keeps me going……………

Prof Strachan asked me to go see Prof Seckl. That day came, on walking out of the room after seeing Seckl I felt like I had hit a brick wall. He was lovely, my kind of guy; told me how it was. And certainly left me under no illusions. A lot of water has gone under the bridge since then. Many treatments, meds, sepsis, infections, peg insertion, trips to London hospitals under the care of the wonderful Prof Martyn Caplin, etc, etc.

Living with this disease is so difficult. Every day produces a challenge and no one day is the same as the other. My carcinoid syndrome can be very unpredictable and difficult to live with. The palpations, flushing, diahrea, chest pain, weight loss, sudden drop in blood sugar, malabsorption, photosensitivity – need I say more. All these symptoms have a knock on effect.

The day my consultant Mark Strachan handed me the card with details of The Ann Edgar Charitable Trust it was a lifesaver. What fantastic support network and great friends I’ve made. Cancer Patients, their families, friends get together for net natter meetings. Share like minded conversations. We know what each other are going through. The charity runs information days by health professionals for both patients, families, friends and health professionals. I’ve made some brilliant pals, sadly a few of them are no longer with us. And boy does it hurt that they are no longer here. Two of ladies in particular I miss terribly. Thats the reality of the group. Our condition is incurable and its inevitable it is going to happen. While its hard to meet folk, get close, and know they are going to leave. Well I guess that it will happen to us all one day. And I would rather have a great time getting to know these lovely folk, sharing some time, even if it is short – shorter for some than others. When we do meet we have fun; go to the pub; have a magic show, ride on a barge, go to the garden centre, go to the theatre. I just know I would have struggled to have gotten through the last couple of years without the chat and support of my cancer buddies.

Whilst I get support from the group. I get an excellent support network from my nurses. they are absolutely fantastic and I’m sure I would go completely bonkers if they didn’t come in before lunchtime and deal with my gastrostomy tube, dressings, give me my octreotide, etc etc. Oh as well as giving my labradors treats. Buddy and Bella love Nurse Evelyn very very much.

My family & friends – you guys are amazing, as always. I couldn’t get through the day without you. It isn’t only the big things like taking me to the hospital, helping clean the house, etc its the love, a smile, touch, a simple text or WhatsApp, a short phone call – no there is no such thing as a short phone call with me – that really helps me feel better.

Since I was a child I have always love motorcycles. My brothers had bikes and I loved to ride on the back of them. When my boyfriend, aged 18 got his first bike I was soon on the back. We got married, day of our wedding to get a pair of shoes for our wedding I jumped on the back of the bike, nipped into Edinburgh and bought a pair. Day before giving birth to our first son I was on the back of husband Steve. Thirty two years later, husband and two sons, Tony and Stuart all have bikes. Steve and I have changed direction and we have gone for a Harley Davidson. We have joined a Harley Davidson Owners Club – best thing we have ever done. Days I feel rubbish Steve can go out on the bike and be with the guys. We have made many new pals. Its like a big family. Who are they? The Dunedin Chapter Scotland. They have just celebrated their 25th birthday. I go on the back of the Harley Davidson with my peg feed on. Couldn’t get on it any other way. Need my sugars to stay up. Its fun, I can put all the worries to the back of my mind and enjoy the thrill of the ride. Meeting new people is great. It doesn’t have to be exhausting I can sit on the bike and get off, join in when I’m up to it, go to a hotel for a rest and if I like or come home and sleep for the week. Its worth it. Its actually really good to be exhausted and sore and say you have actually done something. Most days I’m fatigued and sore anyway. When we want to go somewhere thats a distance away I use my disabled persons railcard and Steve drives the bike, we meet up at the location. It works. We only joined the club in February and already we have met many lovely folk and have been welcomed into the body of the kirk. Steve goes on regular rides weekly and meets up with the guys. Enjoys quality time being ‘Steve’ .

Life is for living and while I am still here I want to make the most of it and spend time with my family and friends. That includes quiet time with my hubby, time with family and friends and time with Ann Edgar Charitable Trust and The Dunedin Chapter. All help me cope with the dark days, the pain and sickness and the most awful days I just feel I can’t get out of my bed. Thanks Guys.

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