PROGRESS CHECK

K and I have been taking things slowly and not going out and about in the same way as before since it takes us quite a while to get going each morning and using a walking frame to get everywhere is surprisingly tiring - K is weary by the end of the day. The weather has been mixed; some days with dark clouds and torrential rain and other days where the sky is blue and the sun is warm. Most mornings it feels very cold when we get up, without central heating in a dampish atmosphere and then having put on layers of warm clothes we emerge outside to hang washing or fetch wood and realise that it is much warmer out of doors.

The Physiotherapist came on Friday and put Kimon through his paces – he was exhausted. On Sunday, we plan to go out for the day to a village Christmas Fair in Varan Episkopi which will be a nice outing if the weather stays fine.

The patient is doing OK and although there is still no feeling in his lower left leg, he seems to be gaining strength and balance in his other limbs and has ventured up and down stairs to the terrace this week and, accompanied by visiting friends, zimmered his way down to the little store on Saturday to buy the bread and say hello to folk. This is good and makes him feel more normal. Incidentally, a zimmer frame in Greece is called a pee due to its shape π (think of Pi-R-squared). We have had some interesting muddles in the ensuing confusion about what healthcare professionals are actually talking about – especially in the context of Urology.

We are attempting to eat lots of cancer busting foods (everyone gives us their input on this) … cauliflower with lots of turmeric, cinnamon with lots of honey, red and orange fruit and vegetables (makes fabulous winter soups) lots of cooked tomatoes, pumpkin seeds, sunflower seeds, walnuts, apricots (or ache-ri-pots, as our grandson calls them), frittata (with lots of above mentioned veg), carrot and ginger soup, red pepper soup and a box of sachets + two pots of vitamins from the pharmacy to try and build up K's strength a bit. All the doctors at the hospital wanted Kimon to eat loads of beef (not really sure about this) while my German friend advocates plenty of milk combined with grain materials. It is keeping me busy researching on the internet and cooking in the kitchen!

I gained a nursing proficiency badge on Friday by performing my first injection – which is a miracle indeed considering I shrank from removing so much as a splinter when my children were small. Compression sores still take a lot of attention and are doubly compounded by a compression stocking around the ankle area. So much of the time I am to-ing and fro-ing between indications and counter-indications and wondering how to balance everything out in a way that doesn't wear us both to a frazzle in the process. Putting on No. 2 compression stockings has to be my gym work out – such a struggle - and is totally lethal if you have pain in your thumb joints!

K goes for hormone injection no. 3 on Monday 23 December. These normally cause a lot of pain for two weeks after. I need to write a list of questions for the Doctor and get my instructions for the next month while we are there. In the midst of translations backwards and forwards, it easy to forget what we wanted to know.

Liz, our kindly nurse friend, (aka Busy Lizzy) was happy to have Christmas at her house and – somehow we will be nine in total but all contributing to the meal, one way or another. We will look forward to it. Getting a turkey from town to Skepasti is will be a bit like a game of Netball and the logistics of fitting three people, a turkey and a zimmer frame into a small car, meeting up with Anna who is doing the turkey collection, a visit to the Urologist, last minute shopping and liaising over Brussels sprouts quite puts my head in a spin.

We are missing all our folk and friends in the UK and wish you all a very happy Christmas and healthy New Year!                                               Καλά Χριστούγεννα και το Νέο Έτος

DECEMBER DOINGS

The weather is bright and cold and there is the most beautiful layer of white snow and ice on the mountain tops and we are needing to think about wearing extra layers at night to keep from getting chilled.

Things have been a bit quiet on the blog front since we returned from hospital in mid November. Principally because it has fallen to me to be master and mistress of the house! Therefore I have been hauling logs, sweeping grates, cooking appetising and protein rich meals and helping the invalid to get stronger and more mobile along with my usual household duties.

Kathi mera, kalithera – which means every day a little better. K's progress has been very good, but he still has a problem leg which makes walking any distance slow and problematic, but he is trying hard and getting as fit as we can manage. We've had a full selection of medical appointments in the last week or two – the Urologist for the horrid injection, a Neurologist to look at the problem leg and DVT, the local clinic to see if we can find a doctor in the middle of all these specialists who can identify what is being prescribed and avoid clashes, the lab to get PSA blood tests and results in readiness for the hospital visit today to see all the Urology Department Professor and Doctors.

The weather was quite sunny with a few white clouds as we bumbled round the mountains towards Heraklion. The route, which would once have had me cringing with trepidation now seems relatively easy and I nonchalantly beetled to the hospital via all the short cuts I have picked up in recent months. We first saw the Professor. We handed over the PSA reading which was over 40 last August, was 10 after the operation and is now 1.44. We thought that this was very good indeed but the Professor did not like it and wanted it to be 0! Well, we had done everything possible in our control – no ciggies, no booze and lots of healthy food, exercise and rest. No patient could have done more and going out in company has not been easy from any point of view. However, it has improved. The considered opinion of the clinic (which seemed to be every doctor in the department sitting round a board table) was that Kimon needed to get stronger before commencing radiotherapy. So we do not have to go back until March when they will reconsider. In the meantime, I have to feed him up and try to get more weight on him!

Christmas Tree and Crib in the Urology Department

After this appointment, we had to go to the Ultrasound Department for a “Triplex”. K & I had no idea what it was, but while Kimon had this done, I was posted to the Outpatient Reception with his medical book and appointment paper to queue for a queue. The numbered ticket machines which designated your turn in the queue did not switch on until 3.00 p.m. At 3.00 p.m. a Rugby Scrum of 60 people assembled round the ticket machines amid lots of people gesticulating and shouting and pushing in. I eventually got a ticket and waited for the windows to open. There were eight windows to deal with appointments, all closed and nobody was working. At 3.15, two windows opened and there was a rush towards them. I waited my ticketed turn and the lady did something on the computer, gave me another sheet of paper which I took back to Ultrasound Reception. This lady had a long discussion with her colleague and asked us to wait for an hour for the results. As we did not know what the Triplex was, had not requested it, did not know who wanted it and needed to get back round the mountains before dark, we quietly left. Perhaps they can forward the results to the Doctor who knows what it means and had requested this information. We will see.

On arrival, we could hardly get to the front door as Nikos, our neighbour, had delivered the second consignment of wood for our log burner – just in time before the weather turns nasty again.

Our friends locally have continued to be brilliant, helpful and encouraged me to get out for respite once a week to our “Make” sessions in Rethymnon where we knit, crochet, sew, chat and drink mountain tea or hot coffee. Our offerings will be delivered to the Red Cross next week in time for Christmas. Kala Christouyenna! X x x

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