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Archive for July, 2017

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one can have an objective discussion about the whole subject with access to current research papers both published and unpublished.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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So . . . . the longest silence from this site?

What’s been happening?

As ever with life, good things and bad.

A lovely short break in Paris (view from my tiny courtyard studio  flat)

DSC02167where I was lucky enough to meet up with blogger friend Chlost for an afternoon and evening meal with her and some of her family.  That visit was full of memories to treasure.

A wedding in Scotland of two gay friends: small but perfect in an old stone House on the edge of the water in Oban.

Image result for manor house oban

Staff who were thrilled to cater for their first ever gay wedding and threw themselves into making the experience wonderful.  A super trip but I was ill on the way home which began a series of medical encounters, of which more later.

A 70th Birthday party to keep close to the heart.  Two years in the planning.  I hired a boat on Lake Windermere in the Lake District: with balloons, cake, farm food, Ceilidh band and magician and . . . well 80 friends and family members from all part of my life.  To spend two and a half hours in a room where every face took one back to fond memories from one’s life was an experience too huge to put into words.  But perhaps a post with photos to follow?

And then the biggie – a diagnosis of malignant cancer.  Always a heart-stopping moment. Apparently I have a rare lypo-sarcoma.  It has been growing for two years, misdiagnosed four times.  But most General Practitioners in the UK never see even one in a lifetime, so hardly surprising.  The final diagnosis came all in a rush with hospitals and doctors ringing me at home and general panic ensuing on their part.  Then a rushed appointment in London to see a European expert in this type of cancer.  An interesting diagnosis: huge tumour, but low-grade.  Unlikely to metastasize at the moment, but could change its nature at any point. No help from chemo, radiation or immunotherapy; only extensive, radical surgery.  Prognosis: scar minimum of 12″ with the likely removal of a whole major muscle mass.  It sounded like brutal surgery from the 1970s.  May prevent me from walking again.  Likely to return every two to three years with repeat surgery each time to remove it.  Little research done because it is so rare – fewer than 400 a year in UK.  Healing – a problem: large hole, drains, infections, etc etc I will not bore or disgust the faint of heart with the gory details but they made for ghastly listening.

That sent me into retreat, hermit mode: no wish to share.  I refused immediate surgery as I needed more time to process all this.  It took a great deal of digesting.

Finally I and the surgeon came to a compromise: I insisted on continuing on with a holiday I have planned in October this year to China, while I am still mobile. He agreed to postponing surgery until November this year as long as I have MRI scans to monitor the tumour.

I’m still not sure I can face the surgery.  I have terrible sensitivities/allergies to all known antibiotics, pain killers and anaesthetics with the least reactions being agonising migraines, continuing through to hallucinations, fever, infections and complete collapse.

So, the first thing I did was go on a 19 day water only fast.  Then I have been eating a ketogenic diet.  Just in case these regimes might at least help shrink the tumour a little.  Let’s face it, I have nothing to lose but weight and possibly some benefit to gain.  But the surgeon warned me against offers of help, which will be useless, and cost a great deal.  Nothing like proffering hope;)

More on this topic if I can face it and if anyone is interested in my journey, wherever it may lead.

Then the last few days we have been in the south of the UK visiting the Supervet, a specialist vet, with one of our little Romanian rescue dogs, Eddie, who is written about in the post on 1st march 2016.  When we adopted him we did not know about his current wound problems.  He has suffered much abuse in his life and now we are worried about the wound on his nose.  He had his tail chopped off, was hung from a tree by a metal snare round his waist and left to die, Capture

and finally someone tried to kill him by hitting him over the skull with a metal bar with a spike on it.  They missed his skull and hit the top of his nose instead, hence the hole.

DSC02352

He was rescued, put on a lorry out of Romania, got to the UK and then us.  Of course we insured him, but predictably the insurance company will not help us as they say everything is a pre-existing condition.

Our local vet knows no-one who can help – hence our visit to the Supervet. We were met by a delightful New Zealand surgeon who sat on the floor with Eddie, and began by saying that everything was possible, for a price.  (I wish my cancer surgeon had that attitude!!)  Eddie stayed overnight and underwent some procedures and now we await the results of tests but we have been warned that reconstructing his nose will cost from £2,000-£6,000.  Now,  we try to be responsible animal lovers, so we will do what it takes: if we have to take out a mortgage on the house we will.  The nurses who all loved little Eddie immediately said, “Go Crowd-Funding” and the surgeon said that he is a very deserving case.   Now I know nothing of such things but they were insistent that I give it a try.

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Do any of you know about crowd-funding, what it is and how to go about it?  My immediate thought is that it sounds like begging, and that is anathema to me.

So, lots going on here.  Some lovely, some dreadful, life’s rich tapestry really.  I’m never too sure what to post because I would hate to depress anybody: I’m not depressed myself, just rather unhappy and over-whelmed at the moment.  But if people would like to follow any of these stories I am happy to write about them.

Over to you folks.  I will follow the directions suggested by any comments:)

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