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Archive for the ‘illness’ Category

Warning: a grim, no-holds barred post.  This may depress you so no offence taken if you wish to pass by.

This weekend was my turn on the Cancer merry-go-round.  All weekend.

Researching information, data, following blogs, case studies, alternative treatments, supplementary treatments, tried and untried treatments.  And getting thrown about, sometimes nearly being hurled off, blown up in the air, dragged round on the ground – but trying to cling on for dear life to some kind of objectivity and clarity.  Readers, there is none.

Some people can be helped by some treatments, yet for others there is no help from any kind of treatment. Everyone is an expert in their own field: no-one seems to have the big picture.

Big pharmaceuticals fund research: but only if some kind of drug protocol might have proven benefits.  Obviously.  But it is so hard for other researchers to make any headway in getting funding to check out the effects of basic changes in lifestyle or diet which, if successful, would bring in no money to anyone.

Then there are the politically driven guidelines for medics who are not allowed, in the UK, to discuss any other treatments than those which have full official sanction and funding.    So there is no way to find out about unofficial treatments or experimental treatments unless one pays: and therein lies the next destabilisation.  The prices charged for the slightest thing are astronomical.  £190 for a telephone consultation.  £335 for some urine testing.  £3,000 per week in a German clinic – and that’s without paying for food or lodging.  And those views are not unbiaised either.

So there is nowhere I have found where one can have an objective discussion about the whole subject with access to current research papers both published and unpublished.  In New Zealand they are having some success with stem cell treatment.  But they use stem cells from fat.  In the USA and UK the research appears to be concentrated only on stem cells from muscle.  My knee surgeon dismissed stem cell treatment as expensive and useless for orthopaedic problems although I know from first hand testimony that this is not always the case.  My cancer surgeon dismissed chemo, radiation, and even immunotherapy as pointless and would not let me even discuss stem cell treatment, as being unworthy of note.  Excuse me?  My body, my future, my muscle mass loss, my mobility compromised, my unhealed scars: and we cannot even mention some treatments? Last night I decided to have a rest from the merry-go-round and watch some Netflix instead!!

However, this morning I begin the Roller-Coaster.  Never a dull moment at this Fairground.  I have just had to cancel my holiday innoculations because of advice that my immune system has enough to deal with already because of the cancer, so no unnecessary challenges.  The first meaningful change to my plans because of the liposarcoma.

My son has messaged me: he is trying to fit his work schedule round my next consultations in London in September and the proposed surgery in November. This makes it horribly real.  Shortly I will have to ring the Royal Marsden to speak to the Consultant’s secretary to find out whether they have a time-line and who will be available to speak to me about anaesthetic and medical allergies, and how we are going to find our way through this maze.  Although I left them with pages of details of my chemical allergies, I suspect these have lain in a file, unprocessed, because there is no way round or through these problems and they have not had to deal with someone like me before.

Which brings me to the post traumatic stress disorder I suffer from.  Because of horrific experiences in childrens’ homes and hospitals, both as a child and as an adult, this is real and present.  Institutions terrify me.  Hospitals speak to me only of death and suffering. And this morning I woke up triggered by the message from my son, lying here going through all the things that have happened to me.

Spending three months in Great Ormond Street Hospital for children when I was ten: I never saw my family as they did not have a car, public transport was not available, and they were not well off.  Being told by nurses that my condition was dirty and smelled foul:  I had ulcerative colitis and was a child.  What could I do?

Things like lying on a table surrounded by medical students of my own age, treated like a lump of meat while in stirrups and 12 men looked into my vagina. No permission asked, I never even knew it was going to happen.  I was never spoken to or acknowledged. Oh I am wrong, the consultant barked at me to open my legs wider as they could not see well enough.  I was 21.

Having friends and family come to my bedside from all over the UK and some just off the boat from Europe, to say ‘goodbye’ as I was not expected to live.  Yes folks, I have already done the gradual decline and debilitation journey to death.  Twice.  The months of slow loss of dignity, of strength, of autonomy. The hell written on faces who can only watch and wait. Admittedly I only got to a few days away from death, but I know the journey. And this morning it feels like yesterday.

Surgeons who inserted feet of dry gauze into a deep, deep wound surrounded by the most sensitive nerve endings in the body, without soaking it first so that it stuck to the dried blood in the wound: it had to be pulled out, millimentre by millimetre bringing tissue with it, while I was held down. Afterwards left in complete physical shock while the tearful nurses tried to pretend it had not happened.  When questioned one said I was so near her own age she could not cope with what I was going through.  This was not a one-off incident.

Allergic reactions to anaesthetic leaving me with such migraine pain that I lay rigid, cold, sweating, second by second, minute by minute, hour by hour, for three days.  It took six hours for a doctor on night duty to be free to come and see me, then longer to get the drugs, and then no effects from the morphine or other drugs.  One nurse said she had never seen anyone in such pain on a surgical ward.

These are just the tip of the iceberg: I feel it may be more than enough sharing.  These happened some years ago so I expect things are very different now.  It is just that these are all my mind and body know and consequently I am in full panic mode right now.  Those of you with PTSD know where I am at today. Curled up in bed, crying, hot, sweaty, trying to ‘write it out’ since I dare not go downstairs and inflict it on my husband.  He is worried enough.

I think this Roller-Coaster is going to be a long one.

So,  having depressed both you and myself, I am going to try to leave this Funfair for a while: I shall crawl out of bed, have a cup of tea, and pretend none of this ever happened, or could ever happen again.  Make my phone calls, then try to organise some counselling and support.  Then thrust my head deep, deep, deep in the sand and on to other things: the garden calls,  I need to write up a statement for Eddie’s Crowd-Funding, I want to think about clothes for China and organise a visa photo.  Not sure whether I have the strength, but I will try.

It’s so ironic that people think I am strong.  If they only knew what you now know.  Enough already. Worse things happening to others. Slap wrist, pull up socks, deep breaths, put smile on.  OK, time to face the day.

 

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As I mentioned in my last post, I have been suffering from a leg injury.

Many, many years ago I slipped on a saliva-rich, cat-feeding plate which happened to be on the kitchen floor (I’ve never been house-proud), span across the room and dislocated a knee-cap on the way.  That knee has always been a little weak ever since but recently there have been a few small episodes which have not helped it.

Three months ago I tore some cartilage turning abruptly on that leg at the top of a rise of steps.  I felt it go and waited for it to heal. When it did not I visited a locum doctor where I was diagnosed with arthritis, which I hotly denied, and sent for an X-ray instead of the MRI I requested.

As I expected the X-ray showed nothing to be wrong, but my doctor was away and rather than see the locum again I took myself off to see a physio who confirmed that the knee joint was fine and agreed with me about the cartilage.  We had a very jolly hour as I was invited to talk about myself in order for him to assess my muscular-skeletal health.

He aked some questions which surprised me: “Do you play a musical instrument?”

Apparently this was suggested by the way I sit in a chair.

“Do you ride horses?”

Apparently this was suggested by the way I walk.

His diagnosis was that yes, indeed, I had injured the cartilage, but that the old dislocation of my knee-cap had altered my stance and gait causing further problems.  His prescription, “Learn how to ‘mosey’ when walking:  loosen up, turn your feet out and move your arms and upper body”.

This I have been doing, with the result that I ended up walking like a constipated duck.

He also gave me some exercises for my knee.

Off I went home to put this all into action.

The constipated duck regularly walked the dogs in public (!) and lay on the bed doing knee exercises.

Now I always believed that ‘no pain, no gain’ – so in order to increase muscle strength around the poorly knee-cap I counted the reps until the muscles began to feel a little tired.  200 reps. OK, tired muscle, time to stop.  Very sensible.

On my next visit to the physio the knee was huge, swollen and sore.

The physio collapsed with laughter and disbelief: “I normally have to urge my patients to activity, not rein them back.  I shall have to be clearer with you.  Only five or ten reps two or three times a day, and never when there is any pain.  And wait until the swelling goes down.”

It took ten days for the swelling to go down.  And at the end of it I fell down stairs bending that very knee back under me.  Back to swollen knee again.

Two weeks later I did the very same thing all over again.

And then did the Spring digging to get the vegetable garden ready for planting out all my lovely young seedlings.

Bad, bad, move.

Back to physio.  “What is going on with this knee?”

I explained what had happened.

“You were digging using the knees as fulcrums.”

“Of course,” I replied, “That is what we are all told.  Do not use your back, use your legs.”

“You took that advice to heart didn’t you”, he laughed.  Rest was recommended.

However, on the way home sudden pain shot through my knee every time I depressed the clutch to change gear.  By the time I arrived back chez nous I was white and shivering with pain having screamed each time I changed gear and stalled the car at least five times when I just could not bear it.

And now?  Clearly, the knee cap is compromised and given the progression from bad to terrible, clearly something is badly wrong.  I can only walk on crutches at the moment and even turning over in bed is a nightmare, while getting up from a chair and going to the loo are actions I only perform when absolutely essential.

On her return I asked my usual doctor to send me for an MRI scan to show up anything that might happening to the soft tissue.  Like I requested months ago.  Exasperation.  Why do medics never believe that we know what is happening with our own bodies?

Anyway, yesterday I went for the MRI, which is a whole story of its own.

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Oh dear!  Stomach upset all night, the details of which I will spare you, but these things usually happen to me when suffering from exhaustion and not enough to drink.  Took the necessary medications which helped but did not cure and which proceeded to give me a migraine.  This often happens, my body just does not like any kind of medication.  So took anti-migraine meds too which worked thank goodness – but felt rather fragile!

So I set out today with some trepidation.  Over a week ago we booked a table for lunch today at Au Bon Coin, since we had had such a wonderful meal there at Easter, and we wanted another special one for our last full day together in Paris.

We had planned to spend a fascinating day with the morning exploring the old Rue Mouffetard  which originates from Neolithic times and is closed to traffic for most of the week. I had thought that a bus up to the Panthéon (details of the Panthéon below) and a leisurely walk down the hill along Rue Mouffetard visiting the historical market area would be great fun, as it ends just beside the Bistro.  Then a leisurely lunch at our favourite place, walking home along the canal and stopping for tea at the cafe on the canal basin by the Bastille.

Rue Mouffetard was adopted by the Romans who used it as a road running from the Roman Left Bank of Paris, south to Italy and then, in the Middle Ages, a church along this section of roadway became the centre for a village called ‘Saint-Médard’.  This was the church we went to on Easter Sunday morning! This area was outside the city walls at this time but was integrated into Paris as the main artery of the “Faubourg Saint Médard” in 1724.  Luckily the area remained relatively unchanged because of its location on a steep hillside, (basically, as I mentioned above, running down one side of the steep hill from the Panthéon which stands on top) which protected it from Baron Haussmann’s redevelopment during the reign of Napoleon III.

The idea was to walk from the Panthéon along Place de Panthéon which becomes Rue Clovis, turn right and go down  to Place de la Contrescarpe where Rue Mouffetard begins and then walk all the way down to Square Saint Médard.

The area around the Panthéon

Panthéon, Paris 25 March 2012.jpg

 photo from  (“Panthéon, Paris 25 March 2012” by Camille GévaudanOwn work. Licensed under CC BY-SA 3.0 via Wikimedia Commons.)

is full of University Departments so the upper parts of the Rue de Mouffetard (it has a different name up there – Rue Descartes) and its environs is a bustling, studenty area.  Hemingway described it in ‘A Moveable Feast’ thus – this “wonderful, narrow crowded market street”.  In the lower cobbled areas, part of which I illustrated on my post on Easter Sunday,

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its atmospheric buildings makes it one of the city’s loveliest street markets with busy, bright stalls of fruit and veg.   Many grocers – who sell charcuterie, patés, seafood, cheeses and sticky patisseries – only select organic and fair-trade goods.

Historically, it was always a busy, working-class area, the kind that springs up over the centuries around really good road connections: the origins of the name are various, but I don’t believe the suggestions on Wikipedia about bastardised latin.  Instead, consider the following: the French word mouffette means skunk, or in old French ‘stink’.  Same thing really!  The French word ‘mofette’ means tanning: at the foot of the hill by the bottom of Rue Mouffetard was the river Bièvre which literally stank from the effluent of the skinners, tanners, and tripe butchers who plied their pungent trades there until the city paved it over at the end of the nineteenth century.  I and others think that the Rue Mouffetard was so-called because of the smell!!

This long, steep road and its side streets has long been a haven for outsiders, real and fictional. Rabelais, Balzac, Victor Hugo, Hemingway, James Joyce, Verlaine, George Orwell, and more, all frequented this area and/or lived here.  Jean Valjean from Les Miserables was depicted as visiting the Church of Saint Médard frequently and various characters lived, or should I say, existed, in the area around this road.  For much more detailed information I can do no better than refer you to the blog at:

http://www.writersinparis.com/formwritersinparis.php

which is superb in my opinion.

Some historical notes from me if you are interested:

[The Panthéon is named after the Greek ‘Pantheon’ meaning ‘Every god’. Originally, here on the Montagne Sainte- Geneviève in the Latin Quarter, there was a church dedicated, naturally enough, to St. Genevieve. Over time this church became damaged and, under the orders of Louis XV the church was replaced with the new building of the Panthéon, erected as monument to express his gratitude to God after he had recovered from illness. It is an early example of Neoclassicism, with a facade modelled after the Pantheon in Rome surmounted by a dome that apparently ‘owes some of its character to Bramante’s Tempietto’ and from where one can see all of Paris from the external colonnade of the dome.
Shortly after the Panthéon was built the French Revolution occurred. The Revolutionist government changed the church into a mausoleum, a place to bury exceptional Frenchmen who had sacrificed their lives for their country or who had done something great for France. Thereafter, the concept of the Panthéon flipped back and forth to and from a church but eventually assumed its lasting role as a burial place for martyrs and brilliant French citizens.
The Panthéon crypt is the final resting place for many well known (and some historically famous) French writers, poets and scientists. These important people include: Voltaire, Rousseau, Victor Hugo, Marat, Emile Zola, Jean Moulin, Soufflot (its architect), Louis Braille, Marie Curie (the only woman to be so honoured).]

So, great plans for our last full day in Paris at the end of our wonderful trip!

But it was not to be.  I was just not up to it. This is my one, real regret of our trip, and I am so annoyed at myself.  L was very understanding and did not make me feel at all bad about spoiling our plans, to my great gratitude.

We had to keep the day simple and physically undemanding.  So, instead of our original plans, we paid one last visit to the Musee d’Orsay to see some of our favourites; we could not get close to all of them, but we managed a few photos:

Caillebotte’s rooftop picture of Paris in the snow – a favourite of L.

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A long term love of mine:

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The Gare St. Lazare by Monet, from where we caught the train to Giverny.

paris last days 2015 003once you have ‘your eye in’ you can see the tall buildings in the background on the left behind the first locomotive: these are the same as those in the photo I took leaving the station in the post on Giverny!!

No explanation necessary for the next one, I assume:)

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after which we had a drink (pear juice for me for the potassium, coffee for L)

and had a final look through the clock

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and then went to the place on the top floor where one used to be able to exit onto the roof: however, this is now shut but through the French Windows we had this spectacular last look over Paris:

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and then took ourselves, via two buses, to the Bistro.  This turned out to be a bit more complicated that it looked on paper with the change half way through. The journeys took a while and when changing buses we spent a time looking for the next bus stop: these are not always in obvious places in Paris so be warned.  Finally L noticed it on an island in the road beside a newspaper kiosk!  On the second bus there were no seats and none given up so we were strap-hanging for 15 mins: the young chap next to me spoke excellent English and talked throughout and knew England well having friends in various places.  I think he would have liked me to invite him to visit us, because he said that he would like to visit Sheffield but, unusually for me, I did not rise to the bait.  It was probably because I was feeling so fragile and ill today and just did not feel I could cope with anything else.  I know that L was surprised that I did not.  Now I feel rather bad about that:(

So back to our favourite eating spot: it was lovely walking in again and being recognised by the the female waitress (standing just behind the male waiter):  on the table to the right was a table full of men out for lunch from work to celebrate the birthday of one of their number.  They all sang ‘Happy Birthday’ to him quite unselfconsciously which was lovely to see.  No reticence in showing restrained but happy emotions.

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We were shown to the same table as last time, perused the menu and ordered.  A couple of girls next to us were eating a HUGE  meal, bigger than anything we had seen before in Paris, and they were quite large themselves: but perhaps this was their main meal of the day.

L ordered spicy swordfish with black and white quinoa which she said was really good.

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I decided I had better play very safe today so I ordered lightly smoked chicken on a bed of mashed potato with spring onions, spinach sprouts and a light gravy, which was also excellent.

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We remembered seeing desserts that other diners had at Easter and had been looking forward to trying them: so L ordered an almond Brioche filled with praline cream and although it really appealed, since I could not eat the Brioche anyway, I ordered a Bergamot cream.  This turned out to be a cold caramel-custard-mould flavoured with orange and Bergamot – really delicate and delicious.  A wonderful meal for someone whose system is disordered!!

We took our time enjoying it all as the Bistro emptied around us, with people going back to work.

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As I was keeling over by now we decided to take the Metro straight home rather than walking, as we had planned to do, through the Botanical Gardens and along the Canal.  Back in our area we split up for me to go home and fall into bed and L to do some shopping and exploring.  On her route L saw some police horses which must have come through to my road because I saw them too.  Very serious young police riders.

I slept for a couple of hours and got up at 5.0 pm when we decided to wander over to La Gare Bleu – the cafe on the canal basin at La Bastille – where previously we had planned to stop on our way home.  We found a table in the sun and had a drink. All the world and his dog, literally, seemed to be there

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– relaxing after the week at work, by the boats, and plants and trees.  Young men making plans for the weekend, paris last days 2015 018.jpg 1older women catching up on the news, younger women on their mobile phones:

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although it was rather too hot at first, the sun soon moved round and it became very pleasurable.  We sat for a couple of hours soaking up the Paris atmosphere paris last days 2015 019as the sun went down behind the buildings opposite us and twilight descended.

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We are not sure when, if ever, we will both be back in Paris together: L has domestic concerns and may not travel across the Atlantic again for some years.

Reluctantly we tore ourselves away as we both have to pack tonight, me for the Eurostar back to the UK and L for Charles de Gaulle airport and her flights home to California.  As we made our way back into our building

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we noticed that the little Waving Einstein in the hallway had gone, as mysteriously as he had appeared two weeks previously.

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He was solar-powered and he has been seeing us out and back each day with a cheerful wave.

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