MEDICAL EXPERTS

Well, we have been home from hospital for a little over a week and time has speeded up so much that we have been hard at it trying to get the house sorted out and keep on top of the mobility exercises and wound dressings. Today, we managed to get out and about and I realised that K is getting much better at moving around. Little by little, things are getting much easier for him. Our lovely friend Liz, a retired nurse who has moved into our village from the UK, arrives at 10 am each morning to give K his daily injection of anticoagulant and stops for a cup of coffee, just like having a District Nurse in the village. What amazing luck is that?

Our heads are trying to escape from the institutional regime of hospital and we are now trying to keep on top of daily meds and all the appointments that are clocking up. We will see the Urologist for the second hormone injection on Tuesday after seeing a Neurologist for an electronic picture of his leg to show where the DVT and/or the neuropathy is placed. Our social life is tee-total for the time being to see whether this will have an impact on the PSA blood tests which will guide the medics into whatever treatment comes next. Kimon looks a little glum over this but he needs to be given a slap on the back for not smoking or drinking for nearly three months. The house smells nice these days.

All of a sudden, it seems to be the Christmas build up period and lots of activities are being planned. On Thursday, I had a girlie day off and we went to a MAKE Session being held at a cafe in Rethymnon while another mate from the village kept Kimon company and brought some home made brocolli soup with him. The group decided to make little clothes and items to hand over to the Red Cross just before Christmas. There were about a dozen ladies there, all skilled at sewing, crochet or knitting and we had a good make session and lots of chats. On Saturday, Liz toiled over heavily laden with card making supplies and we had a mammoth session in the warm, gluing, sticking and dolloping with glitter glue. Fabulous! Today, Sunday we got ourselves up and showered, and after K's daily injection, we set off for a table top sale at Varan Episkopi which takes place each month at an old olive mill and opposite the village taverna there. It was a good opportunity to sell unwanted household things and stock up on Christmas goodies – pickles, flavoured oils, raki, hand made soaps and home made clothes and knitted goods. Liz bought crackers and mince meat for pie making. All we need is to do some carol singing! The weather was a little cloudy, so Kimon found a seat in the local kafeneon for a nice Greek coffee followed by a simple lunch. Lots of friends turned up and it was good to catch up lost time since we saw everyone about three months ago.

The house seems to be in good shape and has not let in any water. I managed to wriggle up onto the shed and bathroom roof with a small pot of roof paint and a roller to finish off the waterproofing while K was having his afternoon siesta on the last sunny afternoon this week. We had just enough paint left to complete the job except for the part where I had painted myself into a corner. Anyway, that is one job jobbed – although I'm not sure my plimsolls fared very well. We also had a pile of admin waiting for us on return from hospital – phone and electricity bills, car MOT during which we discovered that we needed to get a proper copy of the car log book which was not available when we bought the car and all the government computer systems were in disarray. We now have to get this done before we can renew the car insurance in December and get the car tax. Also lots of medical appointments both in Rethymnon and Heraklion (not looking forward to going back at all). So we have lots of busyness that we could do without.

The weather has been a lot of sunny intervals, windy and cloudy but not too cold yet. We have had a small delivery of logs and await a full load soon. The log burner is doing sterling work and keeping us very snug and helping us air the washing which doesn't quite dry outside these days.

We owe all our friends such a huge thank you for practical support and good wishes across the miles this year via our 'moral support' page on Facebook. It has really propped us up when things got so very hard in September and October. Hopefully 2014 will make happier reading and we wish you all a good build up to the festive period and lots of love from us both.

CLOUDS AND SILVER LININGS

Nearly two months have passed since we arrived at the University Hospital for Kimon's prostate cancer operation and what a long time ago all that seems now. It was summer! The muddle over his admission, the long wait during the op itself, the horror of the days afterwards when he was sent to Intensive Care, the even greater horror when he came out after 15 days and the intensive nursing course we have sweated through in the month since he came back on the wards again. We were so happy that his bed was moved from Pathologiki back to Urology where he started. It seemed a haven of peace and quiet after the incessant ward rounds and blood taking from packs of student doctors needing to practise on somebody. Everyone in this ward is much kinder and more helpful and we have the daily visits of George the Physiotherapist who has helped us enormously. As well as the op, the neuropathy in the legs, the tracheostomy, feeding tube and IV lines, Kimon has had to deal with ongoing hormone treatment for the prostate side of things (very sore and uncomfortable) and trying to get himself as strong as possible on the thin rations of identical bowls of unidentifiable broth which have turned up twice a day at lunch time and at dinner while everyone else in the room tucks into a plateful of food. It has no taste at all and we try to syringe it into Kimon when he is not looking because it is so unappealing. Katerina at the rent rooms made special chicken soup for him, but either by coincidence or not, the levine tube blocked when we tried to give it to him (it smelled delicious) and our errand of mercy turned out to be the opposite when the tube had to be taken out and put back again.

Progress is much faster than we would have imagined and we have been working on getting K's leg muscles and limbs unstiffened and unswollen by daily lifting and massage. It is a bit like trying to change a 12 stone baby which was totally impossible at first but which is now getting easier by the day as more movement returns to his limbs. In fact, we have worked with him in baby steps as it is much like going through these stages of development in terms of arms, rolling, sitting up and in the last few days a few staggering steps with the help of willing family members. Although we are still have trouble deciphering what he is saying, Baby has been determined to start potty training as soon as the catheter tube was removed which is really good sign of emerging independence.

Dressing baby with all these tubes sticking out and bottles to manoeuvre through sleeves, and the techniques to make things work easier has at times been hilarious and both K and I have ended up either in complete knots of plastic tubing or wearing his soup when the levine tube has backed up and the result was colourful, to say the least. Keeping baby in clean clothes without a washing machine has also been an on-going task! Anyway, a few days ago baby sat up in bed and shaved his beard, cleaned his teeth and had a good wash and brush up on his own. All good therapy!

I am praying that this will all end soon and K will be well enough and have got all the necessary papers stamped by all the doctors in the hospital to go home because we are beginning to feel like hostages who will never escape. We have been waiting over a week for the tracheostamy tube to be adjusted or removed so that without a feeding tube, there will be room for K to swallow some more nourishing food. He is feeling the cold and needs to put some meat on his bones, so we really hope that the ENT Department will get round to him soon and we can start to plan for getting back to the house and making it accessible for him. We can't believe we are approaching winter because our summer was limited to a couple of weeks when all K's pals came to Crete.

Friends have been fantastic in sending good wishes and practical help. There were moments in the early weeks when I did not think that either of us would make it, but praise God, my back has held out with the help of Ibuprofen from the UK and I haven't succumbed to all the nasty bugs that were floating around in the hospital (lemon, honey, echinacea fizzy tabs and Carolyn's banana bread for breakfast) plus Katerina (the Nurse) who looked after K at night, and Katerina (Rent Rooms) who has plied with wonderful home cooked hot dinners every night. It is small things that count, and all the good information that has come our way has made all the difference. A physiotherapist friend in England Emailed half a dozen work sheets from her hospital which I managed to access on my Kindle.  These exercises have made all sorts of things possible as K gets his strength back. HUGE THANKS TO EVERYONE.

If you have a mind for prayer, please pray that we get home very soon now! X x x

WARD ROUNDS

View from the balcony

A quick update in a short break before my “shift” begins at 10 am. Our lovely English speaking nurse, Katerina works from 7 pm until 7 am and has been a life saver over the last week or two in helping us to look after K and noting signs of improvement and signs that we should point out to his Doctor. The nurses have not deflected from their strict timetable of trolley rounds, followed by doctors rounds, doctor and students rounds, anyone who turns up and feels important rounds – all which signify that the family carers who have been doing all the donkey work are to be summarily dismissed to the corridor for periods which can be an hour at a time. As I have been here five weeks now, I have seen masses of patients come and go in that time and made lots of short term friendships with some extraordinary people. Having been around for so long, I am almost part of the furniture and have armed myself with a folding beach chair, a large bag which holds everything and settle myself out in the corridor for however long it is that they need the room clear of extra bodies. Kimon's doctor demands the room to himself every time he does an “aspiration” - suction – which sounds like an unlikely song title. He is very kind, very earnest and we are immensely grateful to him, even though he is very, very serious in his manner.

I pointed out the George Clooney look-alike to Leo as we were ensconced in the corridor. Close up, there is less of a resemblance but we wonder if he has any other function than to strut up and down the corridor, with his white coat, greying at the temples in and out of doors, looking important. We had a few minutes speculating what his job actually was. Anyway, Leo has made a difference to our ability to cope and our treatment here. All of a sudden daughters are appearing with their families to give TLC to Pappous and help Yaya and engaging in conversation with us. Mama loses no time in telling us that their daughter is highly educated - a doctor perhaps or an economist.  A request for more hand gel or supplies from me to the hospital nurses at the desk resulted in a grudging response, possibly or not at all. Leo's requests met with different treatment altogether and a smile. What it is to have an eligible, courteous, kind and caring son with us. People have offered to go to the shop for us, all these Mamas have lost no time in making introductions … It reminds me so much of the antics in my big, fat Greek Wedding! Katerina the Nurse made us a cake on her last night and artlessly asks who will be on early shift tomorrow.  Leo, wisely is keeping his own counsel and is friendly to everyone young and old alike.  

Church in the Hospital grounds

Anyway, K is improving day by day to the point where he is getting fed up with it all and wants to get out of bed, not really aware that he is hitched up to catheter bags, feeding tubes, IV drips and so on. The doctor is trying to dispense with all these things in a slow process of winding down and removal, so it is slowly, slowly for now. We are all fed up with the tracheostomy which prevents K from feeding properly and shoots mucus as far as 5 feet when K coughs, if you don't get there fast enough. This has meant that someone has to stand over him with tissues nearly all the time unless he is given an “aspiration”. There has to be a moral in this story somewhere. The result is very nearly back-breaking work before we even reach bed bathing and changing. Fortunately Leo brought a slip sheet with him as well as strong muscles which has made the whole task much easier as well as K getting stronger each day and now able to move much better.

Festival for St Luke the Physician was held this week

Thank you all for your kindest thoughts, prayers and newsy photos. It helps us feel that we haven't been forgotten. It will be 5 weeks, nearly 6 this weekend and I really want to go home and do some washing! We hope that the next stop will be a Clinic for Physiotherapy in Chania and also that it will be covered by our IKA insurance and not completely break the bank. Anyway, there are signs that K will be OK, although there is a neuropathy in his legs and feet which might get better with help, or may be more permanent – the doctors can't tell at the moment.

Love, joy and peace to all our brilliant friends.  They have brought great big hugs, home made goodies, English chocolates, helped with nappy changing, and one wonderful couple turned up to our house in the middle of their holiday to clean the terraces and waterproof the roof for the winter.  Others sent money enough to pay for our lovely nurse for a night or so.  Such friendship cannot be measured or adequately repaid.  A huge thank you to you all.

Perry Family only ... At my lowest point, Laddie turned up in the hospital grounds ...
As ever, he was in need of a bath ... !

JUST WHEN YOU THINK ITS ALL OVER …

Our first place to stay, highly recommended! 

 K came out of Intensive Care some days ago, the impact on us has been so overwhelming that I can't actually remember which day. It happened with almost no warning; we went to visit him and a rather hatchet faced lady doctor said that he was moving upstairs today. We thought that this was cause for celebration and waited for an hour to accompany him and the bed to the new ward.

We arrived at a room absolutely full of people, chairs, baggage and heat to K's new quarters. It was heaving with people and obstacles and the nurses on the new ward were nothing like the nice people we had left two weeks before in Urology. K is a heavy lad, all his limbs were swollen and immobile, he needed tracheotomy care, feeding via a tube and syringe and for us to keep him clean and tidy. Anna and I looked at one another with complete horror, because neither of us had a clue where to start, but most of our time was spent dealing with all the mucus from a serious chest infection which happened every time K took a breath. We went through 200 plastic gloves and mountains of tissue trying to keep the infection at bay and this was tiring but OK since K was unable to move his hands to begin with.

I can't imagine what it must be like to emerge from two weeks of darkness to the light of day with all this plumbing and wiring sticking out all over, but K has been only a little agitated so far.

View from the Brods

We worked in 5 hour shifts round the clock to begin with – sitting with Kimon and just falling into bed with or without something to eat and drink when we got to our room. We were lucky that Stavros Niarchos, a shipping magnate, donated a hostel for families within the hospital grounds and after lots of to-ng and fro-ing to satisfy the administration, we got a very nice room there. Our lives were saved by Katerina, an English speaking nurse who agreed to come in to look after K at night, initially for two days, but she was so good that we realised that we had to keep her on for now.  We were limited in what we could do because during the day we had to take turns to work and sleep and even together couldn't shift Kimon up the bed or over to one side. We are not sure why the ward nurses are so hostile or unco-operative, but it is almost asking for a gold mine to get a complete set of sheets and pillow case every morning, let alone a draw sheet, which would have made life easier. This all sounds very negative but there is plus side of this in the families in the same ward doing their share of caring because day to day life in the midst of everybody else’s crises is a bit like a soap opera and there is wonderful sense of looking out for each other. I have seen two ladies keel over with the work and strain of it from our room alone.

There are the elderly couple in one corner. Old Dad is in the bed and his poor elderly wife is there day and night arguing with him and asking him questions of a personal nature in a very loud voice. There are obviously 3 or 4 who are extremely elderly and not expected to come home. Our best bit of luck was finding that the private nurse of the patient in the next bed to Kimon who also had a tracheotomy was very kind in helping with the suction tube when Anna and I couldn't stand to see K suffering any longer. Lena is a very experienced nurse from Georgia and a great source of knowledge and the odd greek coffee when her patient is quiet enough to let her make some!

The harbour at Heraklion

Then there are the ward rounds, masses of them each day. Sometimes Doctors, sometimes nurses, sometimes doctors and students, the cleaning lady, the pills ladies, the doctors again, the food trolley with liquid stuff for K. Each time one of these packs of people arrive, all the families are herded out of the room, no matter if you are in the middle of syringing up milk or recording the quantities on a chart. To begin with, we were annoyed with all this disturbance and couldn't get on with anything, but that was before I armed myself with a chair and tote bag to sit in the corridor and catch up with messaging before we could go back again. There have been days when we have been stranded in the corridor for almost an hour. Now that K is beginning to mend and wants to fiddle with all the nozzles, wires and scratch his moustache and eyebrows, as well as objecting to the oxygen masks and tubes, it is a relief to get out of the room and let someone else worry about it for a spell.

5 new puppies in the hospital grounds

Angel Nurse Katerina has taught us the rudiments (no pun intended) bed- bathing and changing Anna and I have clocked it in theory but in practice, K is just as heavy as ever and no amount of tugging and heaving can get him shifted so my back is very sore and we have to help our Angel when she comes in the evening and rely on one of the ward rounds to sort K out in the morning while doing the things we can manage without doing ourselves a nasty.

I gave K a shave this morning and trimmed his moustache. We needed to do this so that we had a better chance of reading his lips when he is trying to speak. It's all very difficult, but we are persevering. Keep praying for his Carers as well as for him because we are showing signs of wear and tear! x

HANGING IN THERE

This will have to be a brief update as I only have a small tablet with me which will not easily insert photos.

Kimon is still in intensive care and we keep getting positive updates daily in our 5 minute slot with doctors at 3 pm - then we gown up in green overalls and blue overshoes and give our hands a good scrub.  Only after this all the relatives who have been queuing so stoically day by day can  catch up with the patient - all of whom seem fast asleep and not easy to talk to.  However I am practicing one way conversation s and trying to remember all the love and good wishes which have come our way.  Progress is so slow, it is hard to stay patient.  However we hope that kimon will soon be over this setback and back to the Urology Ward where he started.

After nearly three weeks of enquiring, we managed to get a room in a hostel/hotel in the hospital grounds, which has made life easier although I needed emergency chocolate today when a 'problemma'  drove away the doctor before talking to us and meant waiting an extra hour to be admitted to visit our loved ones.  We have begun to make friends with all the other families waiting for news each day.  All of us were out of our minds with worry, but it was a new arrival and all seemed calm when we eventually beat our way inside and checked that our patient was doing OK.

All your prayers are helping and I will try to collect my laptop for a fuller blog asap x

STRESSED OUT CROZIERS

Merope is in hiding out with very kind friends in Panormo, the reasons for this later. Today is our wedding anniversary, but it is probably best not to dwell on it too much. There was a hiccough with all the medical arrangements leading up to the prostate operation because we turned up to the Hospital with our son in tow for what we thought were blood tests on Friday 13^th (!!!) but once we heard the the op had been booked for Monday 16^th , K's blood pressure went up very suddenly and the Doctors doing the tests wouldn't allow him home. They thought it would be better to keep him in to make sure that his blood pressure went down. As we were totally unprepared for this, all his pjs, tootbrush and medication for epilepsy was all still at home, so Leo and I had to keep driving backwards and forwards over the weekend. A round trip of about 60 miles to the Hospital and back around the mountains is not easy. At least I will never worry about finding the hospital again, because I have done the journey so often. However, although K got his epilepsy pills on Friday night on the ward, he did not get any medication until late on Saturday morning when we got there and sadly had his first epileptic seizure in seven years on the hospital ward.

The staff of the University Hospital in Heraklion were amazing. I would mark it out as a flagship hospital – impeccably clean, with well organised and professional, dedicated staff. They have been unfailingly kind and patient and given Kimon the most excellent care, but this took us all by surprise.

However, he came through it OK and the op went according to schedule on Monday 16 Sept. It was such a long wait from 7.30 a.m. until 2.20 p.m., and just as we were beginning to panic, he eventually got back to the ward and all seemed to be going well. K's sister, Anna and I took turns in looking after him. Thus encouraged, Leo set off to the airport from the hospital with a light heart on Tuesday since all the difficulties seemed to have been solved. Leo found us the most splendid room to rent near the hospital so that Anna and I could take it in turns to be with K and grab some sleep when we were off duty.

However, 36 hours later K began to have fits again and had to be taken down to Intensive Care to be completely sedated. This happened on Thursday night and he is still there five days later.

In spite of everyone's efforts and kindness, nobody can describe the feeling of isolation and impotence being in a foreign environment and having to try and work out how the system works. Even Greeks must find it difficult and without Anna and her grasp of the lingo, I would have been completely adrift. It seems that Intensive Care is basically a closed ward for obvious reasons, so the relatives of people there have to gather outside at 3.00 p.m. every afternoon until a Doctor emerges from behind closed doors with a sheet of paper. All the groups take turns to go into the Doctor's office and get the latest report and they may (or may not) be able to visit their loved one with the necessary precautions of aprons, and special hand washing arrangements. They explained to me that the policy of the department is to wake the patient every morning to check for progress but in K's case each morning, the seizures returned, so he was sedated again. They have every modern device in there with wires everywhere and I know he is in the best possible hands, but still ….

Our latest news is that the dosage for sedation has been reduced but K is not yet awake and they are taking it day by day. Since we could not really do any good and were miles from home in a rented room, Anna and I drove back home at the weekend to throw washing in the machine and check on our post, bills and homes. Of course the villagers are very curious and concerned, but for once, I had few words to satisfy their curiosity or give reassurance and needed a bit of space from their enquiries. My Greek is not up to saying that there is no change or, well, any of the above really. I put three short sentences through Google Translate and showed them to Angelliki. Also our immediate neighbours have now got a small dog which is tied up in the back yard howling most of the day and barking at night. Dropping round with some home bakes and realising the problems, our lovely friends, the Brods took pity on me.

If I were on holiday, I would be over the moon to be staying at this sea front home which has a constant view of the ocean in all its moods and within walking distance of the village but still off the beaten track. I have tried very hard to preserve Carolyn's special batch of sausage rolls for K in hospital until he is better, but as the same news carried on I just had to eat them (they fell into my mouth!)

If anyone feels the least bit prayerful, we would be grateful for your positive vibes and best efforts. x

THE HANGING SWORD OF DAMOCLES

As if somebody in the heavens flipped a switch on 1st September, the weather seemed to change overnight and a cool, light breeze arrived. Fabulous! K & I emerged from the relative 'coolth' of the old stone house feeling a bit like Cave Dwellers into the not so glaring September sunshine. It is still 30 C – 86 F, but not quite as desiccating as last week. We are contemplating the annual roof coating patrol before the Autumn rains start and I think it might be down to me this year!

The start to the week was unnerving because we thought we had a hospital appointment for 1.20 pm on Monday to discuss all the scans and tests with the Surgeon. Just before leaving, we telephoned to check where the Doctor could be found in a very large hospital with many buildings. Kindly friends had offered to drive us there and we did not want to waste time or be late for the appointment. Even though the man K had spoken to said that he would see us on 2 September, the request for information was scotched by the news that there was no record of an appointment and not only was that Doctor not in the hospital that day – he was not in Crete.

All that was dependant on getting the date for the operation came crashing down around our ears: an Easyjet flight which should or shouldn't be postponed, a phone call to the person in our UK house with similar health issues and who is not paying his dues, an exam at the end of the Greek School course which I may or may not be present for as well as the sword of Damocles hanging over our heads given that the operation was advised to take place sooner rather than later before the cancer had the chance to spread. Not very reassuring so far.

We called back the nice Urology Specialist who had ordered the tests and the biopsy with the ‘pearl’ of an English speaking Secretary. We asked her if she could find out what had happened and K flirted shamelessly promising her flowers if she could help. On Tuesday, in Rethymnon for a haircut, I dropped by her office with a lovely wrapped gardenia in a tutu of glossy paper and ribbons. She said that she was sorry for the problem and promised to keep trying … and not to worry. She was surprised and said that she did not expect anything extra from us for her trouble, she was just doing her job. In the meantime, K spent another day on the phone and thinks he has an appointment for next Monday. Time will tell.

The trouble is that we are surrounded by Job’s Comforters who are regaling us with their nightmare experiences in Greek hospitals and we have heard from a few people that many impasses are only overcome by the means of ‘brown envelopes containing cash’. We all guessed it happened, but the protocol is baffling for Brits who have paid all their working life for treatment by the NHS.  On the plus side there are many Doctors who would not think of accepting money, but it is so hard for us to know who is who and what is what.

After what seemed like 100 telephone calls made and received to secure an appointment and chat with well-wishers, the Urologist Secretary called us back. She had managed to get us an appointment with the Professor on Wednesday morning TOMORROW! Bravo – only two days wasted instead of seven – we were so grateful for her help.

We seem to have a special Moral Support Club on Facebook started by our daughter in NZ and heard from loads of folk we had all but lost touch with. Kimon said without a blink – thank you for your support, I will wear it always!!  So a huge thank you to all those who transmitted positive thoughts and prayers on our behalf! Keep praying that it is not a wasted journey tomorrow and that I don’t get lost.

Postscript. With the help of a friend's SatNav which had the hospital memorised on it, we got there without any bother but could see the problem as it is a brand new complex built in the middle of nowhere. We spoke with the Professor who had perfect English for some time and the reality of the situation hit K like a train. I had a list of questions to ask but the Prof answered them all as he talked to us.  I took notes because I knew that K would not be able to recall very much afterwards. We had read and knew everything that he said to us but it is a big thing to overcome and K will need a lot of looking after for a month or two. The Prof. said that he would treat him privately. The entire cost for his treatment 2000 euros and we would have to supply 3 units of blood. (To misquote Tony Hancock - two arms and a legful!)  Now feeling a bit like a vampires, we're not sure how to go about finding blood donors - so this will be our next challenge. When I queried K's blood type, the Prof explained that the blood type does not matter because it will be banked, cross matched, exchanged and used by the hospital as and when it is needed.  

After another 20 or so phone calls, K managed to cancel Monday's appointment, but please keep those positive vibes coming our way!   X x x