Nets/carcinoid Syndrome · Uncategorized

Fatigue

We all get tired.  Sometimes we will wake up after a nights sleep and feel like we could go back to bed again for another session.  Or sitting on an afternoon the eyelids choose to close and we need that little cat nap.  Examples of tiredness like this is common and normal.

 

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Since the diagnosis of the carcinoid syndrome I have noticed that little cat naps in the afternoon have been getting more frequent.  And lasting much longer.  I then found at times the least amount exertion and  I was tired, a tad more and then really tired, and then shattered.

I spoke to my net specialist about being so tired and he got me to describe how I was feeling, when, etc.   For those of you that know me you will know this will have been a big long winded story coming from my mouth.  So I went on to describe how I felt on one of these days.  I gave the prof an example, after putting on my creams (all over my body) I would then walk along our hall of our cottage, on walking back my legs would start to feel like a dead weight.  I was walking as if I had iron boots on.  My body felt as if I was taking a giant step for mankind,  when actually I shuffling along the hall. All my energy was getting used up concentrating to try and get from the bathroom back to the sitting room.  Gripping onto the familiar radiator.  Phew made it back to my secure safe mauve sofa.  Despite the thumping heart, jelly legs and utter need to close my eyes, I feel triumphant.  Not a big task for most, but on days like this I am pleased with myself.  Now time for some shut eye.  The conclusion from my docs ; fatigue.

Fatigue. As time has gone on I can honestly say it has became more of a problem and a darn sight more exhausting.  However, accepting it and managing everyday life is the way to go.  It was our anniversary, we jumped in the Audi convertible, a sunny late afternoon in August.  Drive into Edinburgh, we drove to?;  surprise surprise our fav restaurant Cafe Rouge for Steve to get a Steak and I enjoyed sipping a cool mixed berry spritz. Twenty minutes in the restaurant and I feel Steve gently kick my foot under the table.  Biff you are dozing off,  says Steve.   I jump up sorry, think I need to order a set of matchsticks.   Words can’t explain how bad I felt.  You would think there was glue on my eyelids pulling them together.  I was scared to talk for the dread of yawning.  Imagine, the person I am most comfortable with in the world and yet at that moment I felt awkward for the fear of closing my eyes. It was our anniversary, a date night; we hardly go out and I certainly didn’t want to ruin it or disappoint my husband.    I focussed on the room, we chatted about our day, and a few other things.  It was then time to go to The Show at The Edinburgh Festival.  Steve had got us tickets to see a live show.  It was amazing.  The music was wonderful,  we both sang our hearts out.  Turned out to be a great night.

I was at a Net Natter Meeting.  Hosted by Ann Edgar Charitable Trust.  Our Net Cancer Support Group.  You can find out more about the charity at http://www.taect.scot.  I haven’t been for a couple of months.  Barbara, Margaret, Muriel, Eric and I were talking about exhaustion and fatigue.  Eric was telling us how if he tries to do something in the garden the pains in his legs are awful.  And how the fatigue can suddenly overwhelm him.  Barbara and Margaret have similar experiences.  I told them I had been to my GP last week to get my GTN spray, while we were chatting she was very good at explaining about  fatigue and people with cancer.  In many surveys or asking  a person with cancer, fatigue is one of the worst symptoms that a person deals with .  We were sharing stories about how difficult we find things and the need to rest.  Muriel looked over at Eric smiled, turned to me and then said, think I better go easier on .  We all gave a laugh.  The friendship and sharing experiences at the group help a great deal.   I got home from the meeting after dark.  And no denying I was tired.  Next day I was shattered.  But its good to have  reason for being exhausted.

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Nets/carcinoid Syndrome

A Trip To Royal Free In London in April

I had an appointment with the big cheese in London:  Professor Martyn Caplin.  He runs a neuroendocrine tumour clinic at The Royal Free hospital.   He is highly specialised in his field.  And people are referred from many different countries,and travel great distances to see him.  My mere 400 miles, is starters orders for some.  I have a lot of faith in our Prof Caplin.  He is very thorough, takes time to listen to what you have to say.  And most importantly remembers you are a human being and have feelings.   I know when I go down to see him I will most likely be seen later than my appointment time.  This is because he gives every patient the time they need and deserve.

For my appointment in April I need to get myself organised. Firstly we need to book a hotel for a night before and a night after the hospital.  I’m not your average human than can just jump fly down to the smoke, get seen at at the hospital and then travel back.  I tried it once.  It took over a month to recover from the exhaustion.  Premier Inn Booked.  Now time to sort the train tickets out.  It’s great that you can book everything online.  Train booked, and we can get the tickets at the station right up to the day we travel.  Cases are packed.  Lots to go in my case, feed pump, giving sets, feed, dressings, creams, medicines, clothes, etc.  Nurse has been to change my dressing,etc.  dogs are looking at the cases suspiciously.

There has been a slight hiccup with the dogs boarding.  They were scheduled to go stay together with Sally whilst we were in London.  Sally has Buddy and Bella’s son Harley.  The week before we are due to go, Bella goes into season.  Both Bella and Buddy only have one thing on their mind and it’s not walkies.  We have to put plan B into action.  Our friends, Louise & Keith look after Bella and Sally look after Buddy.    For both our dogs this is the first time they have stayed away from home.  Anytime we have ever been away one of our sons have looked after the dogs.  This was a big deal for both the dogs and Steve & I.   I have to say both dogs were looked after impeccably.  They were walked several times per day, played with.  And when we came home we could tell although they were very happy to see us they had enjoyed their time away.

Our train journey was eventful.  We met a very gutsy lady and her 7 year old son.  They travelled from York to London every Sunday.  The young lad attended Great Ormand Street Hospital for an injection.  He was under a trial drug scheme.  He has muscular dystrophy.  We chatted, shared stories, laughed.

When we got to the hospital we used the self check in.  Before I could take a seat in the busy waiting room the nurse called my name.  We walked down the corridor and into the room.   She took my weight. she said.  The Prof wants to see you, if you just take a seat along this end.  Steve and I parked our bums on the seats and waited on Prof Caplin calling me.

Fifty minutes passed my appointment time the familiar gent calls my name.  Prof Caplin kindly waits till both Steve and myself are in the consulting room.  We take a seat.   There is a lot to discuss.  Since I saw him last I’ve had my gastrostomy tube fitted, been hospitalised several times with sepsis/infections, had feeds, cream and meds changed.   After we talk, he helps me up onto his couch, he examines my belly and has a good look at the peg site.  Listens to my chest, feels my neck, under my armpits.  He says  quite a lot of granulation there.  The general all round site and your skin is healing well but you do have a long way to go yet.   I take a seat back beside Steve.  Prof mentions my last 5HIAA test was elevated. The result was 175.  A tad higher than he would like.  He says he would like me to get a scan.  Steve pipes up,  will that be a gallium scan.  The prof immediately answers us,  I can organise that for you, no problem.  You will only wait a few weeks on the scan.  I will book it now whilst you are here.   He then goes into the drawer in his desk and takes out a card and hand it to me.  This is the number for our specialist nurses.  Once you have had the scan and the result is in the nurse will phone you and discuss the results with you.  And what happens next.
We were back home in Scotland three days later.  Two days after  we arrived home the telephone rang, it was the nuclear medicine department of The Royal Free Hospital in London.  My scan was in eleven days time.  Certainly cannot complain about the quality of the service I am getting.

 

Nets/carcinoid Syndrome

Five weeks on and travelling 400 miles again……

July was met with a busy time including travelling to Suffolk to celebrate the wedding of steph and Levi.  Five weeks later and we are returning to the same family – Adam (steph’s brother) is getting hitched to Elodie.

As usual it’s like a military operation to get organised to travel anywhere these days.  Outfits chosen, suitable clothing packed in the case.  Check and re check I have all my medication, creams, pump, milks, first aid kit, etc.  And my companion bear – Hans.    Could not possibly travel all that distance without my bear.

The nurse comes into our home on the morning we are heading down south.  This is to check how I am and to do my dressings before heading off.  My skin on my face, particularly where the tube had been resting has become agitated and red – some improvisation is needed: I’ve a cushioned dressing between the tube and my cheek now to prevent further damage.  My nose where the plaster goes is getting red and a tad sore too.  It’s all a little cumbersome but feels much more comfortable.

The day we travelled down was warm.  Sun cream, hats, oakleys and the essential good playlist on the car hifi.  Two hours short of our destination we make an essential toilet and coffee stop.  On walking back to the car Steve gets stung by a wasp.  In the matter of seconds his arm swells like a balloon.  Fortunately we have cream with us to put on his arm.  His singing is less enthusiastic and driving slower – I can tell his arm is very sore and he has been affected by the little blighter.  We arrive at our destination.   Anna has a lovely dinner on.  We all tuck in and have a good natter.  An hour later I’m more than ready for my bed.  Pjs are on, feed pump is set up and all tucked in for the night it’s been a long tiring day.



Friday is the day before the wedding.  Long lie, quiet morning then visit John and Sam in the afternoon.  In the morning Steve rescued a bird,  I was in my element taking photographs.  Visit to John and Sam was lovely – really enjoyed it.  In the evening Adam, the groom, had guests over – some friends, his cousin Megan and her husband Jason from  Canada.  Guitars were played, songs were sung, laughter filled the room.  It was so lovely to see so many smiling faces.  When Steve gets in bed he sees some flashing lights out of one of his eyes- we check the room – I assure him I can’t see any.  Perhaps he is going to get a migraine.


So it’s Saturday and the day of the wedding.  It’s also our 29th wedding anniversary.   I can remember our wedding day so clearly.  We have had our up and downs, but I have to admit I am happy to say that I still love the bones of that cocky young lad I met in high school who became my best friend, my lover, my husband, our two sons father, my rock.  I can hear Steve talking about the day we got married – me on the back of his Honda cb350 the morning we are getting married to get a new pair of shoes.  Four years ago I managed to get the very same bike for his silver wedding present.

This is Steve touching up his precious 25 year old bike.


Ahh such beautiful memories.  Beep beep bong – that’s my 10 hour feed finished.  Time to get up out of the bed.  Disconnect myself from the pump.   Get some boiled water.  Draw it up the syringe.  Flush my tube.  Deteach the tubing and the empty bottle from the pump and stand. Dispose in recycling.  Put pump on charge for later.    Steve comes back into the bedroom armed with a welcomed cup of hot juice for me and to let me know he is heading out with the groom party for the ‘boys breakfast’.  Just take your time he says you have been up several times through the night – last night was one of those nights that the bowels were in overdrive, the feed pump had a mind of its own and went off a couple of times…… I looked at Steve all dressed in his black watch kilt – yes I still love every inch of you.  Probably more so than the day we married.   The good news is Steve didn’t get a migraine, although his eye feels murky.  He wants to eye drops – not like Steve at all.   Fortunately our bedroom has an ensuite so off I toddle to get washed, apply my oilatum, then my diprobase cream over my whole body, then the factor 50 ultra sun sense sun cream.  Phew – lie on the bed and have a wee rest.  That’s one of the things that gets me the most – is the exhaustion.  Words can’t describe the feeling of fatigue.  I don’t like to sound like a moaning Minnie.  It’s amazing how applying some cream to your skin can feel like a work out.  I have taught myself to do things in stages and where possible out of the public eye.  Ten minutes later and I’m ready to put on my Dundee cream (this is special sun reflectant coloured cream prescribed by a hospital in Dundee.  It matches my colour tone, it reflects the sunlight and stops my skin burning.  My skin reacts even in winter sun for as short as time as five minutes and can peel and blister when the light has shone through glass if I am not protected.) – the cream comes in two colours; coral pink and beige, I mix them together and apply it like foundation.  Once it’s applied it looks great.  Gives a healthy glow even on the peakiest days.  Look at the watch – I’ve got a quiet hour before I need to get dressed.  Anna and the girls are away to get their hair done.



Ta da we are all ready for the wedding – and what a lovely day it was too.  I managed to stay till 10pm.  But when Steve caught me sleeping at the table for the third time he insisted it was time for us to retire to our beautiful hotel room.  I didn’t take any persuasion.

The Sunday and Monday were spent fairly leisurely, which was lovely.  Feet up when we wanted, fun conversation, nostalgic conversation &  some TV.   Just what you need in preparation for a 400 mile journey home.   Steve still kept rubbing his eye.    He bought eye drops and put them in.  He assured me he was ok, I wasn’t convinced.    Looking forward to getting home and seeing our lads and our Labradors.  And not to mention getting Steve’s eye checked out.