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. 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.

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 make a 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.

 

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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.

 

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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.

 

 

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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.

Well I’ve Done It: I’m 50 :)

Well today its my birthday.  I am half a century – the big 50.  Many folk hide their age, dread being fifty and pretend their younger than they are.  Me, I’m happy to be here.  I feel privileged to say I have hit such a milestone.  My fortieth decade was a mixed one.  There was many happy events, lots of love and laughter which keeps me going.  However, I  also had to face a few difficult life challenging times which were so difficult.

 

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I had many occasions to have cause for celebration.  Both my sons attended university in this decade furthered their education.  Our delightful labradors, Buddy and Bella  came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties.  We delivered a litter of puppies from them, and have kept in touch with puppies and owners.  Now made some lovely friends.  Some wonderful children have been born in the last ten years who are really close to my heart.  There have been a few very happy weddings.  I have mad many new friends.  Need I go on.   Life is precious and for living, it is all too easy to get bogged down with our problems.  On a personal level Steve and I are as much in love as we were when we were teenagers.  I believe this is my weapon – Love.  

The one thing I am certain is in the last ten years I felt loved.  The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me.  It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure.   I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary.  Now got my gastrostomy tube fitted.  Life isn’t always easy with a stoma.  Ive been admitted with several infections.  However, its much better than it was,  I have a fantastic medical team and nurses that come to the house which is fantastic.  And I’m still here to tell the tale and thats whats important.

The second half of my forties were slightly more challenging than the first emotionally.  Amongst other things:  A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina.  But you know what we got through it all.  The boys are doing well.  Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion.  It will be three years on the 9th August that Mum passed.  I miss her every day.  We had one of those relationships that we spoke or text every day.  Mum wouldn’t want me moping around.  She was a great character, a beautiful woman that I looked up to and admired.

One day in the consulting room at the hospital my professor handed me a card.  It was for the NET Tumour Support Group that I now meet regularly with.  .  We have all became great friends.  Sadly, one of the friends that I was very fond of passed away last year.  However, I would rather have  spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all.   we all meet regularly every month and have a great time.  Its not doom and gloom, we meet at each others house or in the pub.  Partners, friends, carers go too.  You can have a look at the charity’s website to see what work they do:  www.taect.scot  I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.

I’ve had cards delivered for my 50th birthday.  Including cards from friends in the Net group which is lovely.  One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake.  I could have cried, its so beautiful.

Looking forward to spending my 50’s  with Steve.  Doing what I enjoy.  Taking photos,  writing, cuddling my labs, crafting, etc.  My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love.  I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle.    Have a great weekend guys.  After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night.  Tonight its Craig Hill, tomorrow its Nina Conti

 

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The Light Experience

Sunday 13th March , we are driving in familiar territory.  Steve is in the driving seat on the Audi TT, the roof is down and we are crossing the firth of forth with the wind in our hair. The familiar smell of the sea breeze.  I so love the convertible, I merely tilt my head and I can see the clouds roll in that stormy Scottish sky, no need to put down the window or take a break and get out of the car for a breath of fresh air.  We have the Bose sound system on at warp factor.  Steve and I singing all the familiar songs that come on at random at the top of our voices.  got to say all our friends will vouch for Steve and say he is a far better singer than I am.  This is not only a routine drive of recent.  I went to university in Dundee and Steve picked me up 31 years ago on the motorbike and we drove the exact same route.  I’m sure I listened to the same music and tilted my head and gazed at the clouds and made pictures and stories just as I did this Sunday.

The two hour drive  saw us entering the familiar surroundings of  Ninewells Hospital, Dundee.  I’m up here this time for a three night stay.  I will be attending the photobiology department for tests and treatment.  All part of the ongoing treatment for my photosensitivity. Just arrive in the ward and a smiling face at the reception desk peeks over the pc monitor. Hello Sweetheart, How was the drive up? Beds all ready for you, we will get you round, get you settled and then get the doc in to clerk you in.  She comes round from behind the desk and sees me to my bed.  Its so nice not having to explain who you are, the nurse recognises you from the last time you were in the ward.   I meet my fellow patients in the room, I am in a room of 6 of us. in my days in  we talk, share stories, I will do a separate posting on ‘life on the ward’  Steve makes sure I’m all settled in.  Makes sure all my clothes and pjs are in my locker.  My pump is up on my table and all my feed and giving sets are organised.  Steve disappears for 10 minutes, says he has to go to the shop for a sandwich.  He comes back with a book for me to read.  He knows I have my kindle to read, but he also knows how much I love to read a book, especially a new book, I’m a new book freak, I cant help but  sniff the inside of the book, the smell of it is something I will remember from my childhood and will always love.   I gave my lovely hubby a hug, walked with him to  the private reception area and had a quick snog.  Steve left to go home to Buddy and Bella.  I went to lie on my bed.  That night I got a visit from our friend, Susan.  That visit most certainly needs a posting of its own. By the end of the visiting it was time to sleep. Early start in the morning.

Its first thing Monday morning and time to go to photobiology.  The porter wheels me to the department and parks me in the waiting area.  I’m sitting there daydreaming, perhaps been there for all of 4 or 5 minutes when I feel the chair move and I hear a familiar voice talking at my rear.  Its Dr Sally Ibittson.  Sally is immaculate, such a beautiful, perfect lady.  She makes you feel at ease and talks to you not AT YOU or DOWN TO YOU.  She always makes sure you fully understand everything and usually runs late, since she gives everyone the time she feels they deserve.  Sally starts to wheel me through the busy waiting area, quite a challenge, she kept apologising and asking if I was ok, which I was.  We got to the consultation room.  We discussed how things had been, my current meds, and where we think things should be going.  It was decided we would do the same provocation test as last time, and do a few testing areas on the back.  If all goes well we will try a short burst in the photo therapy light machine, if all ok, we will get it arranged for a machine to get sent to our home for a period of time home treatment.    First things first the provocation test and some other lighting and mapping.  Sally wheeled me through from the consultation room to the treatment area.

As I arrived at the treatment/testing department Andrea the senior technician was standing in the hallway, Cup of tea, before you start young lady? don’t want your blood sugars dropping   She didn’t even have to ask how I take my tea, what a memory.  My eating habits have changed since last being in photobiology.  I have had Lavita fitted.  I can have half a cup of tea.  but I had to bolus 300 mls of feed down Lavita  rather than have a couple of sandwiches.  a wee tad more awkward fiddling around with syringes and flushing my tube with sterile water, but the wonderful staff make it all ever so easy and nothing ever seems like too much trouble.

Chat over, cup of tea drank, bolus feed in.  Body fully refuelled.  Ready for action.  Mr friendly technician hands me my gown.  knowing full well it will take me longer than the average human to put it on.  Me and co-ordination aren’t the best of friends.  As long as I take my time, I get there,  Steve said he has never seen anyone making such a meal of trying to get from a tshirt to a gown.  Once ive got the gown on the next challenge is trying to get on the chair.  Its a tall stool like chair.  For a 5 foot 2 inch person like me it feels like climbing a mountain.  Once I’m on the chair, its fine, its just getting up to the dizzy heights.  Although when I am on the chair my legs aren’t long enough to touch the ground, so my legs are left swinging back and forth.  The doctors come in and decide exactly where they want the machines to be lined up and for how long.  The provocation is to be on my wrist and various others on my back .  When you are getting these tests done, you need to sit or lie incredibly still.  It can also get quite hot, depending on where you are getting it done and for how long. The staff are fantastic and blether away whilst the testing is going on.  They do their best to make sure I’m comfortable at all times.  The provocation test came back positive fairly quickly .  By the afternoon the skin was inflamed, hot and slightly broken,  The doctor got the technician to take photographs of the wrist.  They also noted the results of the mapping on my back. The provocation test timing has been halved.  And the strength was reduced.  This test gets warm, every part of my arm with the exception of a square patch gets covered with towels,and  a special board,  I wear a pair of special specs to protect my eyes.

I need taken back to the ward from photobiology – it’s s fair wheel to the ward and I can’t do it on my own.  One of the technicians carefully steers me along the long corridors , up the lift. Gives us the chance to talk about today’s events.  And  the opportunity to chat about life in general.   The technicians are fantastic with me and build up a trustworthy bond.  It makes it easier for each time you go.  It can be a lonely scary place, even if you are only getting light treatment.  Having a familiar face in the staff makes me feel at ease.  The technician specialist that wheeled me up to the ward stopped at the nurses station and asked to speak to the nurse in charge.  I would like you to dress Elizabeth’s peg site and if you can, please could you either contact GI or a peg specialist nurse and get them to come and have a look at the site and advise on barrier creams, steroid creams and dressings.  They of course did refer me immediately and within an hour a nurse specialist was at my bedside.
Tuesday morning, up bright and early and away to the photobiology.  Wrestled with the gown, clambered on the chair and the docs have came in to see what’s what.  The results have shown that the photo sensitivity has definitely increased.  Sally has come armed with quite a few other doctors today.  We all discuss how I have been over the last few months.  It’s recommended I get an eight week course of phototherapy.  The doctors are concerned if I  got my treatment in hospital I would be at risk of catching an infection.  So I am getting a phototherapy machine delivered to the house.  It’s a fairly large machine.  Just over 6 foot tall and opens out to roughly 5 foot wide.  I’ve got to pay for the courier delivery charge to the house from the hospital.  The nurse estimates it will be approximately £300.  I will have to get the phototherapy treatment every year.

 

Dr Sally Ibittson wants me to have an experimental dose of phototherapy.  So I go into the phototherapy suite.  It looks like there are several white Dr Who Tardis’s – the room has an icy chill to it.  I shiver.  The technician placed a blanket over  my shoulders it’s the cooling fans.  The dose is to be a patch on my inner left wrist.   Because it’s only my arm I don’t need to go in one of the cubicles.  The technician wheels me to a chair.  I sit at it and get comfortable.  The technician puts a stocking bandage over my arm from my elbow to my shoulder and one  from my wrist bone covering my hand and completely over my fingers. Then a towel is wrapped over my outer wrist.  The phototherapy machine then gets turned on for 4 and a half seconds .
Wednesday morning.  I have a meeting with the lovely Dr Sally Ibittson and my photo dianogstic specialist nurse, Susan Yule.  We discuss the benefits of getting the phototherapy at home. The risks, side effects, etc.   it’s hoped  that getting eight weeks of phototherapy will build up my skin and greatly help with the photo sensitivity.  They did admit the first year is usually a bit of a learning curve.    I’m due to have my machine end of June.  I will need two or three days of training at the hospital.  Also need to make sure we get a setting for the machine.   Susan takes me round and let’s me see a machine similar to one that will be delivered to me.  She tells me all about the machine and what to expect at home.  It gives me a really good insight into what lies ahead.

It’s a short stay for me this time,  my hubby picked me up at 1pm on the Wednesday.   As always the staff at ninewells always took fantastic care of me. 

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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