The Word Cloud

Bravery in the Face of Fear - chapter 22 

Recap
      Chemo 6 happened on the 24th February 2011.  I reached my birthday with an enormous sigh and a sense of achievement. 
2 days later I began to feel poorly, and with no signs of improvement I phoned the Velindre support line who made an appointment for me to see my doctor within the half hour.  Suddenly, all of a panic I rushed to the surgery in my car.  Yes, I drove myself which proved to be the biggest mistake of the year thus far.  The doctor was unable to conduct a proper examination of me because I was so ill. 
      24 hours later, slightly recovered, I revisited the surgery for the missed 
examination.  Conclusion was a chest infection and I was given antibiotics along with more painkillers. 
     24 hours after that I was barely able to walk and then my face had swollen and   my eyesight went double vision causing serious disorientation.
Fear seriously gripped me by now and the doctor was called to the house.
Another examination showed that I was now also down with sinusitus.  He'd explained that the general all round muscle weakness through out my body was due to the chemo drugs and had also weakened the muscles in my eyes. 
There was no damage and nothing to worry about.  'I would get better'.  The following day, a conversation with the surgery's eye specialist informed me my eyesight would return between 3 weeks and 3 months.  And boy, she wasn't joking.  It has taken just about 3 months to be able to see straight again.

     I remember back to the aches and pains experienced after each chemo session and felt, as bad as they were, they were nothing compared to what I experienced at the end of it all.  For the better part of 1 month, unable to stand, walk or see, I felt the most miserablest (if there's such a word) and depressed I've ever felt.  
Unable to watch television, make any cards, read, use the computer or work on my cross stitch, all I could do was sit and listen to the radio.
Cold callers, when I was able to get to the door, if they were still there, were told bluntly, 'I'm not interested, I'm too ill to stand on the door.  Goodbye and Go away.'
     There were times when I thought that a london marathon had nothing on the distance between my sofa and the toilet during those first 2 months.  Plus, as I was in so much pain causing restricted movement, I slept mainly on the sofa, rarely visiting upstairs.  Everything was just so difficult.

4+ months on
     I'm definitely on the road to recovery.  (or so I like to think).
I'm still taking pain killers but they are heavily reduced to 1 set in the morning and 1 set at night.  Unfortunately, I'm not able to completely give them up yet as much as I've tried.

     I'd been regularly visited by my local Macmillan Nurse.  I wasn't quite so blind as not to be able to see the pitty she felt for me in her eyes as she helplessly 
watched me struggle.
  
     When we felt I was ready she arranged for me to visit a place called 'Y Bwthyn'.  It is the old Cottage Hospital on Pontypridd Common and has a day unit for cancer sufferers.  I visit there every Thursday.  
    
     There are 6 patients on Thursday and we chat at length about what we've be up to since we last met.   Cups of tea or coffee are supplied through the day but some of the old dears enjoy a glass of sherry after dinner before meditation.   
Thursday is a 'Do what you want' Craft day, a lot of which generates some funds for the centre.
     The Diversional Therapist helps people with craft work of their choice.    As I enjoy cross stitch these days, I looked through all the kits that had been donated and chose one that I thought wouldn't be beyond my beginner ability called 'Felicity Wishes'.  Others like to knit various little chics for easter, snowmen for xmas, woolen dresses for little dolls to cover toilet rolls etc, some paint, some create pinflair christmas tree decorations like xmas parcels, xmas puddings etc.

     They also do complimentary therapy at the centre which I love.  The Diversional Therapist is a Reiki Master and there is one other nurse who does Reiki treatment on request, and the Physiotherapist is also qualified in acupuncture.

     I've visited Y Bwthyn 4 times now and absolutely love it up there.  I'm the youngest by about 30+ years but they are such fun to be around. 
We are all collected by various designated volunteer drivers and returned home by the same people.  I share a car with an old dear called Millie who likes to sing (as she says) in an attempt to help the car up the steep Common hill. 
So at the same point every thursday she bursts into song, 'Oh here we are again, Happy as can be, All good friends in Jolly good company.  Never mind the weather, never mind the rain, ...........'  And we always arrive at the door at the end of the song.  (She's been going there a long time. haha it's down to a fine art.)

     So, to date, with my trusty walking stick I'm walking my dog every morning (weather permitting), and most evenings.  My feet still feel very bad and my hands - well - have their moments but I'm able to use them a lot better now.  My back and joints still ache but the pain killers work well now telling me that the pains are subsiding, and my hair atop of my head is growing up into the centre, creating a little mohawk. 
haha
     My sister says it reminds her of when she was a little girl and our mam used to brush her hair into the centre and it used to curl into a little quiff.  'Yes yes' I tell her, 'ok, so I have baby hair now.' :o)

A new lease of life -  Can you believe a simple little stick can give you a new lease of life?

Feeling miserable at impaired vision for the better part of 3 weeks along with lack of strength, poor coordination yady yady yady ya.

Feeling better now.  A long way from fully operational, but on the right road.

One sunny day I stood at my back door gazing at the steps that lead up to my patio, which is my back garden and I wished, oh I so wished I could just walk up those 3 steps to sit on the patio chair and enjoy the warmth of the sun.
A thought.  I wonder.  MMm!
I began to look around the living room behind things, in nooks and crannies for one of my dads walking sticks. 
FOUND ONE!
Not too tall. Excitement driving me to return to my back door.  I place the stick on the floor outside and I step down.  Sudden realisation hits me with a smile that won't be wiped away easily.  I walk to the steps that lead up to the patio.
I stand there and contemplate how I should tackle the next problem.
I lean on the stick slightly and place my one foot on the step.  I use the stick to raise myself up.  I'm so elated at this point I'm laughing and almost crying with joy at the same time as I stand there alone on that first step. 
I do the same again.  I place my one foot on the next step up and use the stick to help raise me.  The second step.  Oh my God, I'm almost at the top.  I do the whole thing again.  Yes, yes, yippee!  Step 3.
Total elation.  I've made it to the patio in one piece.  I wander over to the patio chair and collapse into it.
A job well done and a rest well deserved..

1 week later
Standing in the Red cross shop I look at the selection of wonderfully coloured walking sticks.  As well as being telescopic and pull apart, they also all come in different sizes.
I deliberately try and go for 'a more grown up looking one'.  But alas, they are all too tall.  Then, the sales man picks up the only one left and says 'I think this is more suitable for you and I think it will fit your height better.'
So I accept the pretty flowery stick he hands me and try it against my leg and wrist for height.  And what do you know, it's a perfect fit. :o)

How much confidence a simple stick can give someone is truly amazing.  It steadies me when I wobble, it helps me up and down steps.  It helps me across slightly uneven ground.  It also helps me out of cars.

A new lease of life to help me on my road to recovery.
What beautiful things sticks are.

:o)

It's been difficult to get myself out of bed this month.  I've been very tired.  But have found time to blog, research and edit I'm pleased to say. (in between sleep of course).

AS FOR MY CHEMO
At clinic
Dr Rachel Jones cancelled one of my chemo drugs for this final session.  It cut my treatment by 3.5 hours.  This meant I would only be there for up to 2.5 hours instead of a full day.  Everyone was surprised at this, but I was actually quite relieved.  she'd given me the option to have half or none of one particular drug, and as I couldn't decide, I'd told her a short story;  I want to buy new shoes for work but I can't tell if they are comfy or not because of how my feet still feel.  They are tingly and pins n needles from ankles down all the time, worse than before.  As this should have gone by now Dr Jones decided to cut this drug out completely.

The MacMillan nurses of Velindre
It was a bitter sweet day at the Macmillan unit at Prince Charles.  6th Cycle, last one.  Hopefully no more.  Hopefully all will be in the past soon.  Only need to visit Velindre for the CT scan and then the follow up clinic appointment.  Followed by slow and easy return to work.

I've actually loved my visits there, because the nurses have made me smile and laugh.  From the first visit to Velindre at Cardiff I've noticed the difference in their nursing staff compared to others.  (please understand here I am not belittling any other nurses, just simply pointing out the higher level of care I feel they give.)
I feel they are cherry picked out of dozens, possibly hundreds to fill their chosen posts. 
I believe they have a special ability to bridge the gap between nurse and patient that others simply don't seem to have.  For what ever reason.

The things that made me laugh on my last visit.
A photographer for a nursing mag' called to take pictures of the staff and the new unit.
Cathy, head honcho, had to stand with a couple of Macmillan leaflets while the photographer placed a chair in not such a good possition, but I thought he'd seen the separation curtain bar above, alas not, as he climbed up he banged his head quite hard the first time.  Poor dab!!.  plus when he'd taken his shoes off to stand on the chair  we noticed he wore odd colour socks.   (Someone wasn't fully awake this morning I thought to myself).
He decided to enlist Lynne, another nurse, to do a blurred walk-past along the half barrier for background.  This was also good humoured and everyone watched and laughed along together as she proudly said she'd make herself taller by tiptoeing, but she could have made it look like she was walking down stairs if he'd wanted.
Apparently, other units being built will be based on the new layout of the Macmillan unit at Prince Charles, they are also having a minister visit next week. 

Chemo session 6
As the nurse looked for the best place for the needle in my hand, she told me to make a knuckle  for the canulla.

As I watched her trying to put the needle in, the skin just indented and it took longer than usual for that needle to penetrate the skin.  She'd said my skin was like a rhino, but this is a regular occurance when you have so many needles.
The skin just toughens up.  For Chemo 5 the nurse located a good soft spot with a good vein and on that occasion as the needle entered the skin the vein below moved to the side and she missed. We both laughed as I'd seen it as well.  I don't think this was a regular thing. haha.

Well, I'll certainly remember this last needle.  The first chemo session, the canulla insertion had been painful, others that followed were fine, but this one, made me swear, and cuss and my eyes filled up.  Not that I blubbed and cried, it was just because it hurt so very much.  I swore plenty.  It wasn't personal to the nurse and she understood that and kept apologising.

But all went well.  It was great to sit in my usual seat number 8 by the window and laugh at the stories being told me and evolving around me.
But as said above, a very bitter sweet ending to a part of my life.  I hope and pray for full recovery and return to a life as the new person I've become.
I know the nurses won't take it the wrong way when I told them that I hope to never see them again up there.

The time away from work has given me plenty to reflect on.

I'm not quite finished with Bravery in the Face of Fear but I hope my blogs of this on-going part of my life have given hope and encouragement to others, which ever side of the fence you are on, as primary carers or cancer sufferers .

It has occasionally been difficult to remain up beat while going through this, but having the support around me has helped me remain strong.

I've not used much of the help supplied by people like Ten of Us, Macmillan etc.  I've had the support someone in my place needs so badly from family and friends.  But there are leaflets and booklets supplied along with the information the nurses themselves can supply and they can always point  you in the right direction.

God bless to all
Gaynor Andrews
 

THERE'S LIFE OUT THERE - JUST AS I REMEMBER IT.

I wasn't going to write a blog this month because I didn't have anything of interest to write about.  All I've done is sleep doze and probably snore. 

 I felt ok when I woke today.  Looking outside I saw the pavement was damp while thick mist hung over the houses in the street, and the mountains across from my window were barely visible in the dense heaviness of the morning.
 Looking at the low clouds, something told me, even though the weather man says it will rain, we'd get some blue sky and sunshine today. 

No aches and pains as I move about the house which makes me smile.  I've only woken once in the night.  Another bonus. 
I remember bits of a dream and I try to pull it all back quietly.  When I'm sure I've gathered all the relevant scenes together in my head, I smile again and text it to my 'dream guru' friend.  Of course I have my own take on my dreams but it's always good to have another point of view.  She speedily responds and I smile some more at her obvious take on the scenario of events and think 'How dim am I not to have thought of that'.  And I laugh out loud, to no one in particular, not even skippy.  Not that he takes much notice of me until I'm holding his regular morning biscuit.

No cornflakes or weetabix for breakfast this morning.  The antibiotics advise against taking the tablets with milk but I've found that having milk too close to taking them makes me feel 'icky'.  Not quite sickly, but enough to make me feel 'icky!' 

Skip is due for his booster this morning, so as I don my shoes and coat he starts to pay attention to me.  Wagging his tail as if to ask 'Are we going out? Are we? Are we really going out?'  He smiles his little doggy smile and with great difficulty sits there patiently waiting for me.  He watches me as I watch myself in the mirror carefully positioning the white sparkly hat onto the wig.  I smile again and laugh at myself.  I do look silly, but I don't care really.   In case I'm wrong and it rains, I don't want the wig to get wet.  And it might be colder out there than I realise. :o)

We aren't long with the vet and as we step outside I tell skip how good and well behaved he's been.  As I zip up my coat I feel the warmth of the sun and I look up to see the clouds giving way to the blue sky I anticipated earlier.  I take a moment to look around at the cars and busses and people going about their business, completely unaware of us being there.  I smile as I decide to put my sparkly white hat into my coat pocket and check that my wig is correctly set.  I look down at skip and say 'Come on then skips, as the sun is shining, lets take the longer way home.'

The walk home is pleasant.  We walk past Mary's house and I see her little pommy dog called Bobby as he barks our arrival at his gate. I've not seen Mary since before my operation so I stop a while and chat with her.  The usual subject of dog fouling comes to light again.  I agree with her how annoying it is.  It is unfair of how we all get tarred with the same brush, of how easily some people can walk away from a big pile of dog poo and have no worries pricking their conscience.  No thoughts or concerns of that muck some how being carried into someone's home, onto someone's carpet, where a baby may crawl!!! But as I begin to feel cold standing there, with the promise I'll knock the door next time I pass, we say turra-for-now and Skip and me make the rest of our way home.

There are more people to meet on the way home and all comment on how great my hair looks. Once again, the old familiar phrase that seems to be becoming my catchphrase 'Thanks very much and "It's a wig" ' trips off my tongue and away from my lips on cue with the usual sigh and a smile. I explain I'm cold and hungry now and really want to get home as we've been out since 10am and it's now almost 12 noon. They bid me farewell for time being and I'm so glad to get the key in the door and settle down with my sausage and mash. :O)


It's been a good day to smile. :o) :o) :o)

Nibs

BRAVERY IN THE FACE OF FEAR   -
     Last Tuesday was clinic day in Velindre.  Slight changes to plan though as my sister came down with a cold.  So, although she drove me she's kept a distance as much as possible to avoid germs.  And has also taken to heart the notice at Velindre entrance requesting folk with colds or flu to please consider others and keep away.

     I was pleased to see at Velindre that Dr Rachel Jones was ahead of me with my drug issues.  She already knew I'd had a bad episode with piriton. (was nice to see that a doctor reads notes and is so 'on the ball').
Plus she'd already decided to change me to something else.  It is a tablet I have to take instead of through the cannula like the previous piriton, and will need to continue taking 1 every day for following 6 days.  That's fine. (Can't remember what it's called sorry reader).  PLus she'd also already decided to cut down my dosage on the steroids and the other anti-sickness to see how I would go this time around.
I'm pleased to say, I've been a lot better.  
                                                                                                                                                                         
THURSDAY CHEMO 2
     Student J stayed with me on this occasion, as my sister still wasn't really well enough and didn't want to hang about.  But the day before, my sister had a very welcome phone call from Prince Charles hospital, Macmillan unit (the new unit opened in October this year where I receive my chemo'). 
     For all the raffle tickets she buys, she actually won 2 prizes.  1 was a tin of quality streets while the other was a cross stitch picture.  The tin of quality streets she decided to give to the nurses on the ward as a gift while she was thoroughly pleased to take home the hand made, very large cross stitch picture.  She's a cross stitch crazy sewer anyway and belongs to a club who call them selves Crazy cross stitch club.

     Slightly off the subject, many many years ago I bought her a cross stitch workstation book (if dear reader you're old enough to remember them they usually cost £10, but on this occasion I found this workstation book for £1.99 at the time in a shop on the Hayes in Cardiff.  And she's been cross stitching ever since. :o)  Best £1.99 I've ever spent.

     I was really grateful to student J for staying with me on this my second session.   She had loads of questions and we chatted at length about a variety of subjects.   I really did appreciate her company as I was a little nervous still.  Not knowing how I would react this time around.  But I was fine. :o) ( I was quite coherent and able to communicate this time).  It was nice to hear her say that she also has problems with a variaty of drugs, including piriton, so she understood what I was going through to a degree.

     Once again, for the duration of tablet taking, I'm currently encamped at my sister and her husbands house, I've been loads better.  But... what happens to some of us, when we feel so good comparing to previous time? We think we can be normal.  I've been busy on my novel (great, not too over taxing) and I went shopping with them yesterday.  Alas, the short asda shopping trip proved to be too much.  But hey, never mind. I have nothing else to do today while they toddle off to Cost-co except chill out and rest the day away on one of the massive leather sofas up here. :o)

     Last night I supervised them trimming the living room up for xmas with the odd nod here and there and a 'that looks nice over by there' (welshy speach)  So as it was snowing a blizzard outside it made it feel really christmassy with the large blue snowflake lights in the window and the tree all lit up in the corner.

     My sister-in-law will be going back into hospital for a second op 'shortly, I'm sad that I won't be able to visit her there, but I will see her when she gets home and it will then be xmas.  I'm sure everyone on here wishes her well along with me.  She was diagnosed with a rare cancer condition - Carsanoid - but as they feel they've been lucky to spot it so early due to the hysterectomy, they are pretty sure they'll find the rest of it to remove it all.

So originally having our ops the same day in September at different hospitals, she's having a second op, I'm going through chemo...  What a pair we make.
                       
3rd session of chemo is due 23rd December.                                                                                                                                                  
A tired ole Nibs signing off
:o)
 

CHEMO 1
     I know I'm not the first and I'm by no means the last to experience Chemotherapy.  I would much rather experience energy medicine with me being the practitioner, not the patient.  Even with the Dr's repeatedly saying 'it's preventative' doesn't make it any the easier to go through. 

     I've always been an upbeat person, always tried to remain positive as this often helps you out of potentially bad situations.  I've often sounded the pessimist, but I assure you, I've always remained the optimist.  Even in this scary situation. There's no point in denying the fear factor here.  That would at the very least give the wrong impression of me and I'd only be lying to myself as well as others by the denial.   Denials build up bad energy inside you.   And if you're unable to turn a release valve, it has the potential to explode in your face with unnecessary consequences.   Old sayings like 'Honesty is the best policy' have more behind the words than some people could possibly imagine. 
Plus, it's so damn easier to be truthful from the start. Then at least, everyone knows the score.

     Life's all about 'experiencing' as well I suppose.  And how can you appreciate the good if you don't experience the bad.  Sometimes bad things feel like they out way the good.  And when you're in that dark tunnel searching for a tiny glimpse of a spark to guide you home, the surrounding darkness can feel suffocating and claustrophobic.  You just have to clean your spectacles and ask for the light to be made brighter.

CHEMO 1
     Well, here we go 'again' I'm tempted to say, even though this has been my first session.  I was understandably nervous on the drive up to Prince Charles hospital.  It was a long drive in an unfamiliar area.  Once there, we drove around the back of the hospital to the new Macmillan Unit, apparently the new gynea' ward has only been open since October 2010. (So new in fact that not even the wheels were dirty on the trolleys).

     My sister collected her parking permit and we sat and waited to be attended to.  If I were a lesser person I would have high-tailed it out of there quick smart.  But alas, my sister would have caught me easily. (I'm still recovering from the operation so not able to walk fast let alone run. Never mind, no point putting things off).

     It was to be a long day 1 as the head nurse (Cathy) needed to explain lots of things to us, (the education side which was very much appreciated and lengthy). Plus, the date was November 11th 2010, and I was very pleased to see the nurses pay respect to the 2-minute silence at 11am. 

     Sitting in the waiting area a lovely elderly lady chatted happily with me. She explained she was on her 5th session as I told her it was my first. 'Don't worry about it my dear'.  She said comfortingly, then made me giggle by adding, 'My husband and I have just popped in to return my boob because it's too heavy and doesn't stick and stay put in my bra.  Would you like to see it?' And she swiftly picked up the box at her feet and placing it on the table opened it up and handed me the boob. (A strange feel to it indeed! and flipping heavy). Then she added, 'my friend has made me one out of cotton wool while I wait for a new one.) Well, what a way to break the ice and totally extinguish for the moment at least the tension inside me.)

      Of all the absurd thoughts going around in my head, the words 'this isn't going to be as bad as I think it is' popped in.  Plus, also I think more importantly, I no longer feel alone. 

     Finally, I sat in the open ward in the special chairs provided as they put the canulla in my right hand.  I'd requested the right hand be used because I'm left handed at most things.  Most importantly, how would I write otherwise? :o)

     The Procedure:
Saline (nice), was also used to flush each ingredient through the tube.
Piriton (bloody awful, here we go again, keeled over sideways - my poor sister, what must she have thought, If I reacted so badly to the Piriton, how on earth was I going to react to the chemo?)
Ritalin (not bad, but not wonderful - still keeled over from the flippin' Piriton)
Paclitaxel (good)
Carboplatin (good) Both so good in fact I didn't even realise they'd gone in. Mind you, the Piriton had begun to ease up by the time the chemos were injected.  In the middle of it all came some toilet trips.  Partly to nerves I guess but probably mostly to the amount of saline solution put into my system.  (it had to exit sometime and being delicate down there since the op, well, dancing feet displayed urgency in the end.)
     Trolley pole being 'plugged in to the mains' I wasn't sure how it would work. So desperately looking around, unable to spot a nurse, then, there at the end of the room was Stan, Yes, urgency made me yell a trifle louder than required which resulted in a row of nurses heads suddenly appear from behind the half barrier as they all looked to the left then right then left again - (reminded me of meerkats). Stan  told me all I needed to do was unplug myself. hahaha)

OTHER HUMEROUS STORIES
     It really helped to lighten my spirits more with some humorous stories passed to and fro between my sister, the head nurse and myself. 

     All was quiet for a spell when I heard a voice say something.  Now remembering I'm full of Piriton at this time, it was understandable that I misheard.   Some one sighed 'Saints preserve us', I thought they said, 'Sainsbury Circus'. 

      One other story my sister related was about an incident at REAL radio earlier in the week.  Hannah Montana star Myly Sirus flew somewhere to promote her new clothing range for George of Asda.  REAL Radio presenters Jagger and Woody show - One presenter thought his producer had said in his earpiece that she'd flown to Abu Dhabi to promote her new line. The other presenter laughed as he'd heard it properly and correcting his co-presenter informed the listeners that she'd actually flown to Asda's in Derby.

     Thursday night, Friday, Saturday - Thursday of following week -

 Thursday night at home, I felt a little tired but very wired the same time.  I didn't sleep well, but refused to toss and turn and simply watched TV in bed. Eventually after a couple of hours sleep I was wide-awake once more.  I sat and thought around my body and system for any signs of change.  But alas, wired the moment I woke I felt an urgent need to 'be busy' but stay in bed.  I searched through my craft kits for something to do and found some beads and safety pins and wires to make up Xmas decorations.  Just a few candy canes and Xmas trees. 
     When my brother arrived in the morning to walk Skippy, he just took one look at me and sighed 'that' sigh, (What on earth was I doing in bed surrounded by beads, safety pins, pliers and cutters etc? 

     Friday afternoon however all had changed dramatically.  I'd tried my best to follow the complicated instructions of the tablets given me by the hospital, but I still managed a little cock-up.  Nothing too serious though. The tablets didn't sit well with me. (Now there's a surprise), but I have to say the steroids were by far the worst.  I'd never been so depressed in my entire life.  So badly depressed by Saturday lunchtime that my sister found me crying uncontrollably and I just felt so poorly, I just didn't know what to do with myself.  So she took control of the situation and helped me gather some stuff to encamp myself at her house for a few days.

      Tuesday and Wednesday were painful days.  Since finishing the tablets I find I can cope with the furriness and itchiness in the mouth, lack of taste, the numbness of the fingertips, (and remembering this is also accompanied by the hot flushes from the surgically induced menopause), I have though struggled with the 'flu-like' aches and pains.  But a quick phone call to the doctor informed me I could take Ibuprofen to ease it for a few days. 

Now on Day 8 after Chemo 1, I'm feeling loads better and looking forward to going to the pictures Friday to see Harry Potter Deathly Hallows Part 1. 

And of course, I'M BLOGGING.

Signing off for now Nibs
(a little blunted by the experience, but never beaten) :o)

     Firstly, I'd like to say thank you to everyone who's responded to my blogs with such lovely words of encouragement and support. Their words have and continue to mean a lot. THANKS :O)

Clinic 1 -       3rd Year Student
     During my first visit at Velindre the Doctor asked if I would mind a 3rd year student Doctor sitting in on my treatments and chatting with me to gain some feedback on my experience.  Of course I'm more than happy to be a case study for her to follow. 

      Both my sister and I met with 'J' - as I'll call her in case she doesn't want her name mentioned - at Velindre and we found her very lovely.   She asked a few questions to begin with and I answered openly and honestly because I don't know how to be anything else.   And besides, I can't lie for toffee...

      She appeared quite enthusiastic when I told her I've been blogging my experiences from the start of all this.   From the discovery of the cyst, the operation and now the chemo sessions which are to follow.  (does J know what she's let herself in for talking to a chatter box like me? I think not). 
     I hope she's been able to locate the blogs and read them as I think this will help her write-up on me as a case study.  So J, just to let you know, if you're reading this, now that I've gone through 1 session and know what to expect for my following.  Both my sister and I would be happy to talk to you further on our next trip to Velindre.

Nibs
GA
:o)
Chemo 1 to follow in next blog

Home - But Not Over yet... October 3rd 2010

At last I'm home. They've set a bed up for me in the living room.  The gas fire is on because no one knew how to switch my central heating on. lol.  The house is freezing and my sister's giving me a polite earful of 'Why did you switch off your heating in the first place?'  Of course I didn't switch it off, it was merely turned right down to zero.  But no one knew.

     All the fussing goes on around me as I sit quietly on the edge of the bed in front of the gas fire.  I'm freezing cold.  I feel totally lost.  The doctor told me to be sensible and DON'T STRUGGLE to do things.  I must let others do for me. 

     Anne's gone now for a few hours. God this feels strange.  I'm so glad to be home but feel so lost.   How do I look after myself?  I think I've forgotten. But I'm not supposed to do anything.   So I just sit here and cry.   They tell me my tears are post op' depression.   That's ok. I'm probably depressed, but I think I'm more confused and lost than anything sat here on my own.

     All that I used to do, all that I used to be, all gone.  I'm no longer the same person.  My sister-in-law arrived back home the day before and by all accounts, sounds like she's doing well.  My brother's arrived and fussing round me.  What must he think of me?  Anne and he have both asked me to look in the fridge and decide what food I want them to buy, and it's like I've forgotten for the moment what food is, what food I like or even what food I should eat. 

     When I was in hospital, everything was done for me.  I mean EVERYTHING.  Tea and coffee's brought round regular, and even if I missed them, the nurses would go and make me a cuppa.  The food trolley would come round regular and I only had to choose what I wanted.  My bed was made daily, and when I was unable to move from my bed because of all the pipes and tubes and bags, the nurses washed me.  Now I'm home.  On my own.  No idea how things are going to work.  I feel like I've forgotten how to look after myself. 
      Stephen has set up my webcam on my laptop beside me on the bed . 'To help keep an eye on you', he says and laughs.  He's immediately getting my mind occupied by setting up the program 'Merlin' on BBC I-player to watch.

     As the days go by, new routines are created.  Thankfully, Skippy is such a popular dog, there's always someone to walk him in the morning and evening.  And as I'm so incapable at the moment of doing much for myself let alone anyone else, there is now a rotar of people to call and feed me... Breakfast, dinner, tea and check on me before bed time. 
     Plus there's constant phone calls from people asking if they can visit, but I can only tell them though I'm really glad to hear them, I'm not up to visitors yet and ask that they hold off visiting until I'm better as I tire so quickly and easily. 

     I sleep on my settee most of the day and catnap through the night with a constant feeling of unsettledness, yet swamped with exhaustion from a simple walk to the toilet and back.   Washing is agony, not from any pain I thought I'd feel from my belly area where the scar is, but more from my back.  My back is excrusiating.  Having lay on my back for the past month and been so motionless on my back in hospital for so long, bending over the sink to do my teeth is an impossible task.  So I sit on the edge of the bath and lean toward the sink, to help take the strain off. 

     At last, the district nurse arrives, it's time to take out the staples, all 30 of them.  They don't hurt, but I'm suddenly concious of myself willing the scar to 'hold together - don't go splitting on me now'.  She puts a strip of stuff impregnated with inodine over some sections of the wound to help and then puts a dressing over it with instructions to keep it dry. 

      I clock watch as meal times approach. But as the days go by I don't feel quite so helpless.  I can boil a cup of water in the microwave for a cuppa, I have a small jug of milk in the fridge that's easier for me to pick up, rather than struggle with the 2 ltr carton.  I have ready-made jellies from the supermarket in the cupboard for snacks if wanted. But I'm not yet able to eat much.  It's exhausting having to eat. 

      One thing I'm suffering from is prickly itchy skin all over, from head to toe, hands fingers and eyes, all itching like I've never experienced in my life. I'm scratching till I draw blood in places, even as careful as I'm trying to be. But the whole thing is unbearable.  The Consultant recently said I should just wash with warm water and no soap or oils or moisturisers until it's calmed down, and she's insisted, it will calm down.   Even though the drugs are out of my system, they've affected my skin and it will get better. 

     The doctor gave me new tablets to follow on from the hospital's supply that's now all gone.  Why don't some doctors listen to you when you tell them some things.  He's given me cocodymol, I told him I'm no good with paracetimol.  He's adamant, I've had them before and I'll be fine now.  Well, I took some for a couple of days and threw up again.  
     Given a choice, I've decided, I'd rather put up with the pain at the scarred area than have no pain but have to cope with severe constipation and throwing up caused by the painkillers.   And speaking for myself, I feel my recovery is a lot speedier. :o)

     NEXT I've had my phone call from the Hospital.  They've said they now have the results of the biopsy of the lumps they found in the cyst etc. They tell me on the phone stage 2 cancer was found but immediately followed the news by saying, Mr Howells got it all out.  
 IN SHOCK.
I was expecting the lumps to be clear of cancer and certainly wasn't expecting to hear that the cancer had begun to spread.  But as the lady on the phone insisted everything that could be seen with the naked eye has been removed, guess I should trust her. They've done right by be so far.

     Mr Howells, the consultant at Llandough Hospital said from the start that he wanted to do preventative chemo on me.  So this is now going ahead. 

 I've paid one visit to Velindre hospital for a chat with a doctor. My next visit is Friday to be injected with nuclear or radio-active substance to check my liver and white blood cell count.  The following Tuesday will be my first pre-treatment check to make sure I'm ok for the Chemo, followed by my first chemo session as Prince Charles at Merthyr where apparently, they have a new wing.  

     So, life goes on and moves forward, sometimes hour by hour, sometimes day by day. Last Sunday, I decided, I'm strong enough and capable enough to tackle my steep, narrow staircase.  So now the bed in the living room has gone back to it's owner and I'm sleeping in my own bed. 

      So with the added convenience of a comode in the corner of my bedroom, borrowed from the red cross until after xmas I'm sleeping longer and a lot more restful in my own bed again.  As I now feel more alert and 'with-it' so to speak the past few days, I've begun making birthday cards again to keep myself occupied and occasionally sort through all my emails. Though I still tire very easily and very quickly. 


      I'll update again when I'm next on line. Thanks to all who send their best wishes for my speedy recovery.  The next blog may well be about how I handle total hair loss :o)

What happens in a hospital ward?  Well, more precisely, what happens on Delyth Ward at Llandough (for english people, it's pronounced landoch) during my weeks stay.

ARRIVAL DAY - SUNDAY 2pm (I'm told I'm on Bed 14)
I sit on the bed and survey my surroundings.  Have a little play with the bed controls to get the hang of them, very nice.  Am sure I'll appreciate the electrical movement of the bed at a touch of the control pad. Very cool.
Being able to raise the back of the bed and the knee area of the bed up and down to my own preference feels rather a treat.

My sister finally leaves me to it for a few hours with the promise she'll pop back later during evening visiting to make sure I'm still ok.
Well, D day almost here, I'm  as 'ok' as I'm going to be.  I have my nintendo ds light and a few games to keep me occupied, my brother has bought me a new mp3,  and kindly filled it with all my bbc radio dramas.  I have to try and keep myself occupied and prevent as best I can, the fear taking over.

Sat on the bed I listen to the chatter of the visitors.  Patients behind the curtains talking about their families  and a basic run-down of their life stories.  Curtains provide privacy from being seen, and after a while I suppose others in the ward are forgotten  as those voices  behind the curtains get louder.

Soon the visitos all leave and the ward is left in peace and quiet.  A general calmness fills the ward as the Staff Nurse sits at the long table in the centre and fills out her paperwork.  

Not long after, the rattle of crockery is heard in the corridor announcing arrival of the teas and coffees.  I'm ok to drink clear fluids, black tea, coffee, water, squash, but no milk and no buscuits, but  I am told I can have a jelly later.

The late afternoon sun sweeps across the floor through the large bay window in contrast to the black TV screen sat motionless  in front.  As tranquility and stillness fills the room, patients begin to fall asleep, some quietly, some snore, well... definitely asleep making some strange noises.  
An old dear by the name of Joyce decides to sing for a while.  (I can't remember what songs they were but they were old London music hall songs) and in between the lyrics she groans 'Ohhh, me belly...'  Poor dab I think, I'll be like that myself soon I daresay.  Well, not the singing part, but will soon be walking around holding my belly for every footstep. 
Others sit quietly reading or just sit back in their chairs, head back and eyes closed, resting.

Peace didn't last long as a rattling noise comes long before I see what makes the sound.  Not the tea trolly again, but the nurses with the electronic machines to take blood pressure, plus a goofy gadget to stick in your ear to take your temperature and a clip for the finger to test the oxygen level in the blood. 
PLUS
Along comes another nurse with a pile of injections for everyone.  These are blood thinning injections that go straight into the tummy.  'first of 2'  I say thinking I've understood, but sadly I'dve got it wrong as she replies, 'no sweetheart, you'll get one of these every day while you're in here'. 
It's fine though, it didn't hurt........ only the stinging sensation was felt a few moments after she'd gone. 

 Supper time
Lasagna, chips, ice cream and jelly amongst other things on the plug-in hot and cold food trolly.

As the sun goes down behind the trees in the distance it creates an orange glow in the sky and contrasts with dark clouds above.
The light in the room dims  declaring time to put the lights on. 

Having only been here a few hours  I'm already impressed by the attentiveness and care of the nurses.

Visiting once again.  The ward is practically empty of visitors as only my sister arrives for company.

Bedtime, the nurses walk around again with their electronic machines,  the tv is finally switched off after only having been on for a couple of hours, but it's still a while yet before the room will settle into the stillness of the night.

Nighttime
Of course, how can I sleep with the operation the following morning.  Plus through the night the nurses still have to monitor a couple of people.
I can only lay here and watch the clock on the wall gently ticking away.

Gradually, people sleep, people wake.  People bleep on their phones as they txt their friends and family.  Joyce begins to sing  a gentle rendition of Lambeth Walk.  Bruises hurt, people moan and complain quietly but smile and joke it away.  Life's too short, too precious  to whinge and whine and complain without a laugh and a giggle on the way.

My turn is only a few more hours away.   I'm over-tired now but still unable to sleep.  Still watch the clock on the wall nearby. not even midnight yet.
I'm so desparate for my return from the theatre when I'll be free of organs  that are of no use to me any more and who's only purpose in life up to now has been to drag me down and make me ill.

I'm still distracted from my approaching drastic hystarectomy by a strange conversation that continues as patients appear to snore in response to each other. Never together.

Some snores grow in intensity while others are calm in their response.
I think I'm discovering here how snoring can say something of ones charactor. 
Some snore so harsh as they struggle to drag the air through the nose too fast, causing it to vibrate in it's struggle resulting then in ghostly sounds that haunt the room.
Some snores reverberate as if in the depths of a cave on the seabed, while others whimper so quietly, they are hardly heard above the din.
Some groan endlessly between breaths.  Some sound like aggressive lions.

Soon, at last, the dead hours approach and the night finally takes me in its arms to comfort me to sleep where I can, at least for a couple of hours, forget about the operation.


(am tired now and need to rest. TO BE CONTINUED)