My Big Fat Greek Hysterectomy – an emotional rollercoaster

I have written this for your entertainment. I hope that it will bring a smile to your face and perhaps reduce some of the fear that you may be experiencing.

In my family we tended not to trouble the doctor with trifling little matters such as health issues. Most things were cured with a kiss or a rub, or in serious cases, with an aspirin. I don't think we owned sticking plasters. I happened to be blessed with an effortlessly tall and slim frame which caused some women to call me a bitch, despite the irony that in so doing they were demonstrating far greater bitchiness than I ever did. I was also blessed with trouble-free and painless menstruation. That was until my forties. Then my periods began to be excruciatingly painful and eventually I was forced to consult a doctor. An ultrasound scan revealed that I had thousands of tiny fibroids in my womb and nothing much could be done about them except for painkillers. So be it, I didn't grumble, I'd got off much lighter than a lot of other women.

My partner and I decided to move to a small Greek island, and to simplify notorious Greek bureaucracy, opted to get married. We had, after all, been living happily together for over thirteen years, so not something we had rushed into with foolish haste. Very soon after our wedding I went to have my navel pierced and my husband designed a beautiful gold and silver stud with which to adorn it. It stood to reason that in Greece my navel was likely to be on display with rather more frequency than was my habit in Britain and an enviably flat stomach deserved to be decorated. My new stud was actually my wedding ring. The cheap finger ring I had bought at a market stall and which we had used during the ceremony was simply a decoy.

After five years of living in our Greek idyll and with no health issues to trouble us, I thought it prudent to find out about having a smear test. It was laughably simple, turn up at the health centre without an appointment and the midwife will do it right away. I have never liked smear tests, but this one really took the biscuit. While the midwife was scraping away with the lolly stick she asked me if I had made love with my husband the previous night. I replied that I hadn't, because I hadn't, deliberately, for her benefit. And then she removed the lolly stick from inside me, and, dripping with unappealing goo, shook it in my face and demanded “What is this then?”

I don't know” I replied truthfully, resisting the temptation to point out that she was the one who had studied medicine and should be better able to recognise different species of goo than I. She said she would send off her swabs for analysis but that I should make my way post-haste to the gynaecology department in the County General Hospital on the mainland. So that is what I did. The gynaecologist there assured me that there was nothing untoward about the goo and that I should await the results of the smear test. This I did, the results came back to say that I had an infection and that I should get that cleared up and have another smear test once the infection had gone away.

None of the island doctors felt up to the task of prescribing medication for an infection with no name and so in preference to another long and expensive ferry trip, I consulted the local pharmacist who prescribed a course of antibiotics. I have no idea if this cleared up the infection, just as I had no intention of seeing the hateful midwife ever again.

Shortly after that I turned 50, my periods stopped, devastating hot flushes began and I had difficulty controlling my bladder. These were all apparently normal symptoms of menopause occurring at the correct time of life and so I braced myself for more of the same. And shortly after that I began to bleed during intercourse.

This indeed prompted me to take the long and expensive ferry trip to the gynaecology department at the County General Hospital on the mainland. There I was seen by a lovely doctor who had an unfortunate resemblance to Marty Feldman. This doctor chose not to examine me himself but to send me off on a treasure hunt round the hospital seeking a series of tests which he had written down on a scrap of paper.

At this point I should tell you that I had stupidly learnt only rudimentary Greek, I could do my shopping in Greek but I couldn't have a conversation. I had no idea which departments I was seeking, and asking for directions was a no-brainer. Eventually I found the smear test people who said they could fit me in in a fortnight. I told them I was to have the test right there and then and asked them to call Dr Marty Feldman. This they did and then it all became clear, I was to go to the emergency room. Now this may seem hard to believe but the emergency room has its own suite dedicated to gynaecological emergencies. Wow!

I was hopped up onto the examination couch, feet in stirrups and examined by the loveliest classic-Greek looking lady doctor. The look of abject horror that fell across her face will probably remain with me for the rest of my life. She got straight on the phone to Doctor Marty Feldman who abandoned the outpatients clinic and came rushing to the emergency room to see for himself. An ultrasound exam immediately followed the internal visual inspection and I could hear learned mutterings even though I couldn't understand much of what was said. By this time I think there were three doctors involved, possibly more. Suddenly they all walked out leaving me lying on a couch with my abdomen covered in a huge amount of jelly. I found some paper, cleaned myself up, put my clothes back on and left the examination room to find out what was going on. I was being admitted to hospital on the spot, that's what. I phoned my husband to tell him not to expect me home on the afternoon ferry and then I was whisked off for chest X-rays.

Luckily we knew one person in the city, so my husband phoned him to ask if he could source a nightie, a toothbrush and some toothpaste and deliver them to the maternity ward in the County General Hospital, because that indeed was where I was. A little while later our friend arrived, somewhat bemused. His wife was way too short for one of her nighties to be any use and so he had brought a dress shirt of his own. Now then, all the other women on the ward had had advance warning that they would be in hospital, whether they were there to give birth or for some other gynaecological mystery. They had all prepared themselves by purchasing natty new luggage, natty new nightware, natty new slippers, natty new sponge bag, natty new towels and facecloths they had had a pedicure, their legs waxed and their hair done. I on the other hand, had had no preparation at all and so appeared in their midst like Albert Steptoe. My husband had been tiling our bathroom the previous day and so I was not at my best, with bristly legs. The men's dress-shirt was the icing on the cake.

That first Monday evening I met the head of the department, a gynaecological surgeon of international standing and with an amusingly unorthodox (for British standards) bedside manner. I was requested to wait for him in the ward's own examination room, knickers off, dress-shirt on, feet in stirrups. In he came grinning broadly, slapped my thigh and said “Hello nice English lady!” I liked him straight away.

The following morning my husband came to see me bringing useful items such as clean knickers, a dressing gown, a book, phone re-charger, hairbrush and razor, but since we have animals, he was not in a position to stay for more than a single night. Greek hospitals differ from English ones in that whilst there is a good deal of doctoring going on, there is much less in the way of nursing. Patients are expected to be attended to by visiting family and so visiting hours last almost the whole day, and in certain circumstances, visitors are allowed to sleep over night on vacant trolleys. But at that stage I was fit and ambulant and had no need for round the clock assistance, so he spent the night in a hotel.

I was to undergo a series of tests and for that purpose was fed only the oily water left over from boiling chicken, with a squeeze of lemon. It wasn't delicious. My husband, on the other hand, had a rather lovely meal at a waterfront taverna with a glass or two of wine to wash it down. I had blood tests and urine tests and X-rays and CT scans, all very interesting. I used to sneak a peek at the notes at the foot of my bed but most of them meant nothing at all to me. The best I could glean was that I had a couple of huge fibroids in my womb and they had had the audacity to turn malignant. Excitingly rare! I felt a bit like a rock-star.

We managed to source a small lap-top computer so that I could while away some of the tedium of not being able to converse with the other women on the ward by writing twaddle and doing Google searches for clues left in my notes. By Thursday evening I was told that I would probably have to undergo a radical hysterectomy and it was at that stage we felt we ought to notify my mum. I had a biopsy and was told that the hysterectomy was necessary. My husband arranged for friends to look after our animals and my elderly mother flew out to join us.

The head of the department of whom I had become fond was of the old school and didn't agree with bothering patients with the details of their ailments. He did believe in bothering next-of-kin and so it was that he asked my husband if we had any children, (I don't but he does from his first marriage), asked how good his relationship was with them “Good! Because you will need them” “Pray to God for your wife and do not cry in front of her. And do not tell her any of this”. How desperately alone my husband felt. Thankfully he had the wit to call my sister who supported him and told him not to keep any secrets from me.

More tests followed, including a hilarious colonoscopy which was punctuated by a bloke from the hospital maintenance department walking in while I had a tube pumping barium soup up my bum. He calmly climbed up his ladders and lifted a ceiling tile to look at some problem with ducting in the void above. The radical hysterectomy was scheduled for Wednesday morning, a mere nine days after I had walked in off the street. The night before I was given an enema. I have never had one of those before and didn't know what to expect. A staff member put whatever it was up my bum and told me to wait five minutes. I began to desperately need the loo but she didn't return. I hung on and hung on becoming more and more distressed until one of the other patient's visitors explained (kindly, in English) that I had to take myself to the loo. I was dreadfully afraid that I wouldn't be able to reach the loo from my bed without losing control part way there, but happily, this didn't happen. This was the most upset I had felt since the unpleasant incident with the midwife and her lolly stick.

I was four, four and a half hours in surgery. I have never felt so dreadful. I had a tube up my nose and down my throat for a few days, a drip in my arm and a catheter. But gradually things improved. At one point Dr Marty Feldman, who was a bit of a maverick and did believe in telling patients what had happened to them, came in and told me that they had had to remove most of my vagina. How much is 'most'? 51%? 99%? I had to ask. 50-60% I was told. This came as a dreadful shock. I had always known that a radical hysterectomy included 'part' of the vagina but had never for a single moment imagined that it could include so much. My husband was superbly reassuring, telling me that it didn't matter, the only thing that mattered was that I was alive and well.

But before I was told about that particular loss, the surgeon came to tell us about how well the operation had gone and what had been involved. After opening me up, my intestines and everything else in there had been bathed. The bathing liquid was sent off for analysis. Then all but the affected organs were hoiked out of the way, to leave more space to work on the ones in danger. At the end of the operation, everything was bathed again and the liquid was sent off for analysis. When the results came back from the lab, the surgeon was both stunned and thrilled that there was not a single sign that the cancer had spread beyond my reproductive organs.

I have since learned that the operation causes the muscles that push everything along your intestines to stop working. Sooner or later they start up again all by themselves but there is no way to kick-start them. Mine took days and days and days and during that time it was not possible to eat food because it just sat there making me feel ill. I was desperately afraid that something had gone terribly wrong and that I wasn't going to recover. Eventually my digestive system did indeed begin to work all by itself but by this time I had become a little anaemic and that needed to be remedied. I returned home after 23 nights in hospital.

The local doctor would change my dressing for me and give me jabs in the buttock for the anaemia, so painful they reduced me to tears, and when the doctor's surgery was closed the pharmacist would do the jabs for me in the little room at the back of his shop.

After the final staples had been removed and the dressing was off I could at last see the extent of the damage. A hideous purple gash running vertically up from my pelvic bone to just below my navel, and then round my navel like a question mark. My abdomen had become swollen and bulbous and the gash cut straight up the middle, tighter than the surrounding flesh making the whole thing look like an extra bum. My navel was now squinting diagonally and I was heartbroken. My legs felt funny and were difficult to lift normally and I was permanently tired.

A few weeks later I returned to the County General Hospital to see the surgeon. I asked him about the 'malignant fibroids' but he simply said that now it was all gone I shouldn't be thinking about what had been wrong in the first place. He pronounced me healing well and gave me all my notes. Here in Greece it is the patient, not the doctor who looks after the notes, X-rays, CT scans etc. This is a great system because it means you can take all your information with you to whichever doctor you choose, and you do not need to be referred to a specialist by another doctor. He told me to make an appointment to see the hospital oncologist.

Once back home I Googled everything in my notes. It became quite apparent that I had had stage T2b (IIB FIGO) adenocarcinoma and that I had had 11 lymph nodes removed from my right hand side and six from my left, all of which had tested negative. Not a word anywhere about malignant fibroids. It seems that I had been extremely lucky in that my cervical cancer had chosen the route of least resistance and had gone barrelling down my vagina without any attempt to cross through the wall into the surrounding area.

A little later the County Hospital oncologist told me I should have a course of radiation therapy but that his hospital was not equipped to provide it, I would have to travel further to the Provincial Hospital. I made an appointment to see the radiation therapy department at the Provincial Hospital. They examined me, told me that my surgery was “excellent”, read my notes, agreed that I should have radiation therapy, and possibly chemotherapy as well and then announced that their linear accelerator radiation therapy machine had broken down and what with Greece being in the grips of a severe financial crisis was unlikely to be repaired in the foreseeable future. I would have to go to one of the two main cities, Athens or Thessaloniki. I chose Thessaloniki and an appointment was made for me to see the specialists there.

And a little while after that I made the lengthy trek to Thessaloniki. It is not possible to reach the hospital on the edge of Thessaloniki in time for an appointment if one sets out from my island home on the same day, so I travelled up the day before the appointment and stayed overnight in a hotel. The following morning I made my way to the hospital, met the specialist, who was lovely, agreed that chemo-radiation was the correct cocktail for me, and set a date in the diary for the treatment to begin. She also wanted to see me in the middle of the week before the treatment began.

My husband joined me on my next trip. He wanted to know why I needed all these therapies if the surgeon had successfully removed all of the cancer. She explained that the most recent research showed that chemo-radiation gave the best possible chance of non-recurrence of my type of cancer. I was put onto some kind of X-ray table so that the radiotherapy team could pinpoint where they wanted to target the radiation beams and then crosses were drawn on my hips and abdomen in indelible marker and covered with see-through sticking plaster. “Do not shower until the treatment is completed” I was told. I understand that in Britain they use henna tattoos for this purpose, which probably allows for better personal hygiene!

The doctor also gave me a diabolical diet sheet; no beans, nothing containing seeds, I can't now remember all of it but I was not allowed fruit or juice except for apples and bananas and I was allowed lettuce only if it was boiled! And nothing fried. Since I would have to stay in that city from Monday to Friday every week for five consecutive weeks, we also wanted to find somewhere suitable for me to stay. Obviously a standard hotel with adjacent taverna would not suit, I needed somewhere self-catering, and I didn't know a single soul in the city so I would be all alone, probably feeling weak, tired and pukey.

We struck gold! We found a brand-new vibrant youth hostel in a quiet part of the city. The staff were fabulously friendly and helpful and there was a kitchenette in each small dormitory. The place was buzzing with young excited backpackers exploring the world.

The following week my treatment began. I set off from home on Sunday afternoon and about ten hours later arrived at the youth hostel. At the crack of dawn I was up and out and on my way to the hospital for my first treatment. It was a bit nerve-racking because I didn't really know what to expect and couldn't understand most of what was being said to me. But everybody was kind and friendly and as helpful as they could be given my language limitations.

On the second day I was taken round to the chemotherapy department to meet the therapist there. She again was as nice and helpful as could be and was able to explain to me a little bit more about the cancer I had had which had, for the most part, been swept under the carpet by the surgical team. I have to admit that I was terrified by the sight of the big chairs used in the chemotherapy department. Frankenstein thrones I called them, but I now know them to be ultimately comfortable and adjustable for anybody required to remain in one for four or more hours, whether you want to sit up and watch TV, or lie down and go to sleep, they do it all, it's just like a huge parent's lap. And right next door to the chemotherapy department was a wig store! How thoughtful is that! The one thing that I found particularly odd was the fact that lottery ticket vendors would walk around trying to sell lottery tickets to patients waiting for chemotherapy. Did we look like we felt lucky? And lottery tickets have pictures of saints on! Whaaat??

Thereafter it was chemo every Monday morning followed by radiotherapy, and then radiotherapy every morning for the next four mornings Tuesday to Friday. The hospital was well aware that after treatment on Friday I had a very long journey to get back home for the weekend and so they rushed me through the machine as soon as I arrived so that I would not miss the bus nor the ferry. If I missed the Friday morning bus it wasn't worth making the journey home at all. I never missed it.

After twenty five cycles of radiotherapy and five sessions of Cisplatin, I then went on to have two doses of brachytherapy. Because we told the UK tax office when we left Britain that we were no longer resident, we have not been entitled to free health cover abroad and have paid for every single treatment out of our own savings. Thankfully world-class healthcare does not cost silly money in Greece, my initial 23 days in hospital including major surgery came to less than 3,000€ - god bless Greece!

The therapies made me feel tired, but not too pukey. The radiotherapy caused some random bouts of diarrhoea during the second half of the treatment, which made me anxious of the long bus journey with no toilet, and the chemotherapy kept triggering my shingles, but apart from that it was fine. I have fond memories of my experiences there and look forward to my six-monthly check-ups when I can catch up with some of the friends that I made. I cannot deny that I still get a little anxious before each next round of tests. It is now getting on for three years since my surgery and so far, no sign of the cancer returning. The tummy is almost flat again, the scar is paler now, my navel is still diagonal and I can't wear my navel stud, but I have so much to be grateful for, the whole experience has made me a stronger and more confident person.

The saddest part of the entire experience has been that my libido has diminished to nought. I have read other women on this forum putting this down to the radical hysterectomy followed by radiotherapy, but I believe they may be being too harsh. It is something that often occurs naturally with menopause, even when the menopause is naturally occurring itself. How many of us had grannies and grandpas who opted for twin beds? How sad this would have been if it were simply a means of contraception, prior to any loss of libido. My heart goes out to those of you who have gone through all of this much younger than I have. At least with an understanding partner and sultry Greek nights and hot flushes permitting, we can still share a cuddle in our large shared bed.

Go well.

Tivoli

3 Likes

Hi Tivoli

welcome!

wow! That sounds sounds like you had such a scary time when you were diagnosed! I'm not sure I would have coped so well under the circumstances. 

Really pleased to hear that you're doing so well now and still enjoying your life (I had a bit of a lump in my throat at the belly piercing being lost :( xx)

thanks for sharing your story with us xxx

Hi BeBe

Thanks for the welcome and for taking the trouble to read the whole thing - it's a bit long isn't it. Thank you also for caring about the belly piercing, I seriously cosidered omitting that bit from the narrative for fear of sounding vain, but really, it doesn't matter the cause of the upset, feeling upset is feeling upset.

I just wanted to make some of the scared people here feel less alone in the world. Reading some other people's experiences I'm not sure which I'd find scarier, waiting for test results or being admitted to hospital on the spot. I am not at all sure how well I would have coped had I been sent home with the word 'malignant' bouncing around in my  head. To a degree I benefitted from the somewhat unethical way I was not put fully in the picture. Believing that it was fibroids that had turned nasty as opposed to an actual part of me helped a lot. I suppose it would be like having kidney stones, they aren't actually part of your own body are they. I also found it very helpful to find myself in a very new, strange and distracting situation.

I do find it interesting how perceptions of things change depending upon circumstances. When I was in hospital for the eight days of tests preceding my hysterectomy, my bed would be wheeled down to the CT scanning room and I'd wait there all snuggly in bed feeling sorry for everyone else who had to stand around or sit on hard waiting room chairs. Now when I go for my CT scans if there is someone in a hospital bed in the queue I don't feel envious, but just desperately sorry for them that they must feel awfully afraid.

Lots of love

Tivoli

Hi Tivoli,

Welcome and thanks for sharing your story.I lived on a greek island for a couple

of years and I have some understanding of their health system,although very

professional,I know what you mean about the lack of nursing.

I am amazed how well you coped with all the treatment whilst been alone

most of the time.Not having your home comforts etc. No baths would have

killed me.We have actual tatoo's in this country...marked for life!!

Bodily changes are a major factor not to be taken lightly,and take along

time to come to terms with.I am two stone heavier and feel super frumpy

and old before my time.

I wish you continued good health,and I am a little bit jealous of your greek

lifestyle LOL!! Enjoy X

Take care

Becky x

Hi Becky,

Thanks for your welcome, I'm very pleased to meet you. It's odd isn't it how we take in our stride all the hurdles we have to face but cannot undersatnd how other people have managed to cope with theirs. I see that you had a recurrence after five years - that's so scary! When I was first going for chemo-radiation I would read this forum quite a bit, but when LouLouH got a recurrence after such massive surgery it knocked the wind out of me and I stopped reading, I just knew I didn't have that kind of courage. Reading your comment above reminds me that I am keeping company with giants on this forum, such very brave and strong women.

I wish you good health too, just let me know when you want to come and pick olives ;-)

With love

Tivoli

 

Thanks Tivoli,

funny how you see other people been so much

more together....We are our own worst enemies in that regard.

As women we give ourselves a hard time guilt etc.I know what

you mean,reading some other ladies experiences.

Thanks for the offer, might take you up on that one day! :-))

Becky x

Tivoli,

I must say I haven't laughed so much in ages! What an incredible, crazy experience to have - you really should write a book!!

So very glad you are keeping well :)

I've found laughter has helped my friend and I (both stage 3) get through this - all through having the serious squits, puking in volunteer driver's cars, and a thigh gap you could drive a truck through!

Maybe we should all get together and write about our experiences, a chapter each? :)

Much love and thanks for sharing, 

Mandy

Oh thank you Mandy :-)

I'm so glad it made you laugh, perhaps one day I might do a book, there really is quite a lot to laugh at here in Greece. To the best of my knowledge, the book idea was originally posted by Tequila189 back in January 2012, I wonder if anything came of it.

I'm really glad that you and your friend both find that laughter is helpful, I certainly do. How grim things could be without it! I look forward to reading your chapters!

Your thigh gap sounds glorious! Perhaps we could do a calendar as well! Which reminds me, during the hilarious colonoscopy with the maintenance man in the ceiling void, I had had so many CT scans and X-rays that I mentioned to the guy operating the machine that I now had enough pictures for a calendar. Thankfully his English was good enough to understand my remark so when he put the final negative into the machine he called out “December!”

Keep laughing!

Tivoli

Tivoli,

How funny!! It's decided then, you will be Miss December ;)

Is there a way on this site of searching for a particular member? We need to find Tequila189! I wish there had been a book I could've read when I was first diagnosed, women who have been through this, their thoughts, feelings, experiences and funny stories. I don't think there's anything like that out there! Along with the calendar we'll be raking it in! Haha....

Best wishes, Mandy x

Fantastic post tivoli. So glad you and your partner survived, I am saddened so many couples don't. Fortunate that my husband is my rock. You should definitely be writing. Your style is fabulous

Hi pkjpi 2013

Thank you! :-D

I think our relationship has the benefit of age. That's not so much to do with how long we have been together but how unlikely we are to go running off looking for an alternative at this time of life. I think we have settled into a 'warts and all' stagnancy ;-) It hasn't all been plain sailing, but we're quite settled now. Yes, it's dreadful how many younger relationships go to the wall, very sad.

You are a very brave woman and I am glad to know you.

xxxxx

Tivoli

1 Like

Hi again Mandy,

So sorry I missed your post. Please tell me I don't have to wear warm clothing to be Miss December!!

When you are logged in there is a 'User Directory' I did try to find Tequila189, she hasn't posted since 2012, I think she left, but you never like to ask how or why do you  .  .  .

Keep smiling :-)

Tivoli

xxxxx

Please can I be Miss April? Happy to share all my madness to for the book. Including swearing loudly at the consultant who diagnosed me, the student nurse fainting when I was diagnosed, swearing again at the surgeon after my first operation, the anaetheist congratulating me on having a really bad tattoo and the nurse who removed my stomache drain saying "oh my god how gross is that" 

lets keep smiling ladies

Ruthie 

Hi Ruthie :-D

Course you can be Miss April! You sound like just the sort of Easter Bunny we need! Your experiences sound hilarious! Please write them up in full lurid detail, we'll get a book out of this for certain. Please tell, what happened to the poor nursie who used the word 'gross' when speaking to a patient?

Lots of love

Tivoli :-D

Hey, I'm not to sure what happened to said nurse, I have to go back in for another operation in a week or two so I do hope she is still there. I'm also hopeful that the nursing auxillary who told me to "try being her for a few days" if I thought I had problems, is still on the rota!

 

R x

Hey, I'm not to sure what happened to said nurse, I have to go back in for another operation in a week or two so I do hope she is still there. I'm also hopeful that the nursing auxillary who told me to "try being her for a few days" if I thought I had problems, is still on the rota!

 

R x

Hi again Miss April ;-)

Do you think we should also have a Rogues Gallery including some of your team along with my hateful lolly-stick woman?

Best wishes

Tivoli

None of the people in my story were photogenic enough for a rogues gallery!!

x

Mine neither, but a photo of Dr Marty Feldman should raise a laugh at least

:-)

Hi Tivoli

Thank you so much for taking the time to write that post!!!!! 

im waitting for my first colospomy appointment in a few days time and im not ashamed to admit im very nervious and very scared

of what they will do!!! Reading your post has been the first time i have laughed since i got my letter thank you so much xxxx