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Breaking news

Nothing to do with China, but we have have just had a photo of Eddie after his operation: he is still at the other end of the country staying at the supervet while they check that no complications arise.

I’ve just had the following email from one of his nurses:

“Hi,

As promised the photo of Eddie is attached he’s looking soooo handsome after his “nose job”

He was a bit worried about me taking the picture in the kennel so I did a picture outside and after had a lovely cuddle with him and rubbed his scar.

He likes sidle up very close to me for a chest rub and I think this helps him feel reassured and that we are all lovely and wanting to help him.

We will continue treating your boy like a little Prince and will make sure he feels very loved.

Kind Regards.”

This is him one day after his operation with his brand new nose:

 

 

And this was him before with his ghastly hole:

 

 

They imported some artificial skin from New Zealand and covered the hole with it: then drew up some of his own skin from each cheek and sewed it together over the top of the artificial skin.  Barring infections this should do the job.  Fantastic news!!!!

 

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Let’s get one thing clear from the start.

I am an adventurous, free-spirit who travels light on this Earth and can pick up a rucksack at the drop of a hat and set off to explore pastures new.

At least, that is who I was when I was born and who I remain inside.

However, accidents and misfortunes have rendered my poor old frame injured, surgically altered, immune constrained, chemically sensitive with food allergies, and recently diagnosed with cancer.

So, that poses a teensy problem when travelling to somewhere like China.

It took me seven months to make the necessary preparations which was frustrating in the extreme, but proved wise in the event.

If you are interested I explain here what is recommended and what precautions I took: if you are not interested, please just skip:)

Now a lot of advice is geared towards people who are independent travellers and/or who are up-country: for my own safety and for the security of an established umbrella organisation I had decided that I needed to be sensible and go with a well-known travel company.  This I did and although it meant that the trip was rather too organised and over-sanitized for my liking, and most of the other people, although very pleasant were not my type, it was a good choice and also meant that our visits to many sites were stream lined, trouble- and queue-free.

The World Health Organization (WHO) recommends the following vaccinations for travellers to China:

Adult diphtheria and tetanus (ADT) : Hepatitis A : Hepatitis BMeasles, mumps and rubella (MMR):  TyphoidVaricella If you haven’t had chickenpox.

The following immunisations are recommended for travellers spending more than one month in the country or those at special risk:

Influenza : Japanese B encephalitis : Pneumonia: Rabies : Tuberculosis 

In China there are day flying mosquitoes and night time flying mosquitoes: both carry diseases. – Dengue Fever and Japanese Encephalitis.

First of all my doctor was adamant that I should have most of these immunisations:   as I have severe chemical allergies to 40% of modern pharmaceutical drugs this necessitated arranging a session in hospital while I was ‘challenged’ with minute amounts to see whether my system could cope with them.  This took months to arrange, and when it did take place I collapsed, so no immunisations for me.

Although water quality in many of China’s major cities is now much safer, the delivery system is not, so non-Chinese are not advised to drink the water, although washing and brushing one’s teeth is OK.  However, since I need to change surgical dressings on a regular basis my doctor wished me to use only bottled water both for drinking, teeth brushing and wound cleansing: after washing my hands I was also to use hand sanitizer and follow the recommendation to wear long-sleeved tops, trousers, and socks to avoid mosquito bites.  Also to use mosquito nets and apply insect repellents.

Now I am fairly sensible so I chose dates for this holiday that fell as nearly as possible into times when mosquitoes would be least abundant.  However, since we are visiting both warm southerly places as well as chiller northern ones this was slightly problematic.  Being on a river for six days in warm areas was also thought provoking!  Unfortunately, I cannot be around most sanitizers without collapsing and the same effect happens with anti-mosquito preparations.  So I had to spend some time trying to track down things that I could take that would not affect me. The Cruise ship sprayed the cabins each day but I had to ask them not to do this in my cabin and also asked them if it would be possible for them to provide a mosquito net.  Look for the photo of my cabin later in this diary to see how they responded to this request.

Finally, I found anti-bacterial wipes that I could tolerate and took long, light-coloured, loose cotton clothing to help prevent disease-carrying insect bites (none of which I have in my wardrobe living in the north of England, of course!!).  My holiday was to be constant hand washing followed by hand wipes, and brushing my teeth in bottled water.  Also, no salads, peeled fruit, or cold dishes: in some parts of China human waste is still a standard agricultural fertiliser!  If I get any kind of stomach upset it can be extremely serious within a few hours leading to extreme dehydration and collapse.

So far, so good. Although my doctor was not overjoyed at the prospect of this trip, or me going unprotected.

Lonely Planet Medical Checklist

Recommended items for a personal medical kit:

  • Antibacterial cream, eg mucipirocin
  • Antibiotics for diarrhoea, including norfloxacin, ciprofloxacin or azithromycin for bacterial diarrhoea; or tinidazole for giardia or amoebic dysentery
  • Antibiotics for skin infections, eg amoxicillin/clavulanate or cephalexin
  • Antifungal cream, eg clotrimazole
  • Antihistamine, eg cetrizine for daytime and promethazine for night-time
  • Anti-inflammatory, eg ibuprofen
  • Antiseptic, eg Betadine
  • Antispasmodic for stomach cramps, eg Buscopan
  • Decongestant, eg pseudoephedrine
  • Diamox if going to high altitudes
  • Elastoplasts, bandages, gauze, thermometer (but not mercury), sterile needles and syringes, safety pins and tweezers
  • Indigestion tablets, such as Quick-Eze or Mylanta
  • Insect repellent containing DEET
  • Iodine tablets to purify water (unless you’re pregnant or have a thyroid problem)
  • Laxative, eg coloxyl
  • Oral-rehydration solution (eg Gastrolyte) for diarrhoea, diarrhoea ‘stopper’ (eg loperamide) and antinausea medication (eg prochlorperazine)
  • Paracetamol
  • Permethrin to impregnate clothing and mosquito nets
  • Steroid cream for rashes, eg 1% to 2% hydrocortisone
  • Sunscreen
  • Thrush (vaginal yeast infection) treatment, eg clotrimazole pessaries or Diflucan tablet
  • Urinary infection treatment, eg Ural

I did not take all of this but I did take the few items I knew that were safe for me and also covered most common conditions: clove oil, T-tree oil, homeopathic kit, soluble ibruprofen, dioralyte, codeine phosphate, buccastem, anti allergy tape, cough tablets, and my regular prescription items.

Tips for Packing

  • Pack medications in their original, clearly labelled containers.
  • If you take any regular medication, bring double your needs in case of loss or theft.
  • Take a signed and dated letter from your physician describing your medical conditions and medications (using generic names).
  • If carrying syringes or needles, ensure you have a physician’s letter documenting their medical necessity.If you have a heart condition, bring a copy of your ECG taken just prior to travelling.
  • Get your teeth checked before you travel.
  • If you wear glasses, take a spare pair and your prescription.

In China you can buy some medications over the counter without a doctor’s prescription, but not all, and in general it is not advisable to buy medications locally without a doctor’s advice. Fake medications and poorly stored or out-of-date drugs are also common, so try to bring your own.

So, I heeded this advice, followed it, and for good measure had my prescriptions printed out, dated and signed by both my Doctor and Pharmacist: I was anticipating problems with Chinese officials: as it turned out this did not happen, it was the English officials who behaved like little Hitlers.  (More on this next time.)

I also discovered that the flights to and from the UK to China were fumigated with an insect killer which I could not tolerate.  It took all seven months to track down a face mask and filter combination that I could wear on the plane for 40 minutes while this took place.  The company also recommended that I took charcoal masks to cope with the common problem of air pollution in many Chinese cities, and other chemical events that I might encounter.  Very helpful of them.

It was suggested that I should contact the airline for two reasons: one to ask for oxygen to be available in case of some kind of chemical exposure during the flight (oxygen is the only thing which brings me round) and secondly to explain my need for medical equipment because in that case my luggage would not be weight limited.  Given the weight of the mask and filter alone this was a tremendous help.  Apparently only one passenger per flight is allowed oxygen.  I was on four flights with British Airways: Manchester to London, London to Shanghai, Beijing to London, London to Manchester. (I could not manage to discover how to make this arrangement with the three different Chinese Airlines we also flew on.)  Gods be praised, but no other passengers on my flights had asked for this concession, so after several doctor’s letters and filling in loads of forms, my medical allowance was given the go-ahead and my oxygen request accepted by BA.

Are you bored yet? I was.  Bored and fed up and frustrated  Image result for frustration   and getting more depressed by the day as the complications of my medical situation were brought home to me.  Of course we were preparing for all the worst possible scenarios which is highly unlikely, but in the circumstances the doctors thought it necessary.

Then I got the diagnosis of cancer and my surgeon wanted to operate in July/August: I refused as the operation will make me immobile for at least three months.  Not until after China I determined.  But it was more pressure. Oh yes, and now I have very little hair.  For some reason it has been falling out at a rate of knots, either from the shock of the cancer diagnosis or the various interventions I have tried.  Very good for morale.

As a little extra soupçon a few years ago I badly re-injured a knee joint: exercise, diet and pilates have transformed the joint but it is still ‘iffy’ so that meant taking two hiking poles and a knee-brace to use on the Great Wall at least.

Did I mention that I like to travel light?         Image result for travelling light

Because of surgery I do not absorb or metabolize nutrients well, so that necessitated taking supplements that I needed.  Also the few usual drugs that I can tolerate in case they are not available where I would be – all of which have to be prescription items for me.  It was brought home to me that since some of these contain codeine the Chinese Customs might not be happy: so that entailed getting print-outs of all my prescription items, listed, dated, and signed by my dispensing Chemist and Doctor.

I was told that I MUST carry all my medical items in my hand luggage so that I could not be parted from them. Because of lots of major surgery in the past I have to wear an appliance.  That is normally no problem.  But with skin allergies there are only certain types of appliance that I can tolerate: these are not available in China.  So I had to take everything I might possibly need for the whole stay, plus extra in case of emergencies.  This involved pastes and powders.  And, you guessed it, no Security in any Airport lets you go through with large amounts of pastes, liquids and foreign looking powders.  More paperwork, this time to present to Security: this paperwork was approved, dated and signed by British Airways Medical department and also the relevant NHS departments.

You may have noticed that so far there has been no mention of guide books, normal day clothes, diaries, pens, sun hats, underwear,  – the usual things people consider when packing.  Not relevant so far.

Since I cannot eat gluten or dairy products, I had had translated and printed off, a sheet that I could give to restaurants, cafes and chefs: I also took some gluten-free crackers and a few other dried emergency items – just in case.  All triple wrapped in case of sniffer dogs at Chinese customs.  Oh yes, and a bar of 90% dark chocolate for when everything just got too much!!           Image result for emergency chocolate

By now you would imagine that all possible eventualities had been researched, discussed, and dealt with.

Oh no.

One week before I was due to set off I felt that I had crossed every T and dotted every i.  I had printed paperwork for everything I had organised, plus translations into Chinese, and had laminated some of these as well.  Then my normal monthly appliance prescription was returned  – late- with some of the most essential items missing and no explanation.  I spent three days trying to find out if anyone else had the items or knew what the problem was.  I was told eventually that the manufacturer had, with no notice and no explanation, stopped making the items and would not make them again until November.  You can perhaps imagine my feelings at this point?  I was also told that the local hospital pharmacies would not dispense them for me even with my prescription because it was a family doctor prescription not a hospital prescription, even though the surgery had obviously taken place at the hospital.

If anyone ever felt that the fates were against this journey, that was me at that moment.

But I also felt that I had worked damn hard for this trip, at the same time as negotiating other family problems, and pet crises, and that come hell or high  water I was going.

Finally, nearly crying with frustration,   Image result for frustration     I found an online dispenser who listened to my plea, knew about the manufacturer’s situation, and cut through all the red tape by suggesting that she send me the next generation appliance which would be following on from the one I was already using.  It was not yet available on prescription so I could not send her that, but like an angel, she said not to worry, she would send them to me and write them off as sales samples.  She had them despatched by courier and they arrived the day before I was due to leave.  I would have hugged and kissed her if I could.Image result for kind angel

 

When I was young I knew that I had cousins in Peking (as it was then) who were half Swedish and half Chinese: it seemed very exotic and I always wanted to know about their lives.  Their escape from the Red Guard was legendary in the family.

People from Burma lived in our house when I was very small and I loved it when they were on baby-sitting duties: the stories they told and the clothes they wore were different, prettier, so much lovelier than my day-to-day normality.  Sitting on their knee was to be in heaven: the ladies were loving, dark, petite, fine-boned, smelled gorgeous and wore silky and satiny clothes.  So different from my tall, bony, blond Scandinavian relatives.

One of my favourite stories was a book they gave me called Dabbitse (by Chiang Yee, see note below) about a little boy whose father was called Obstinate Ho.  The boy spent each day with his beloved Water Buffalo Dabbitse.  One day Dabbitse gets into the garden of a rich house and eats the Lotus flowers in the pond much to the distress of the owner’s daughter!!!  The illustrations are wonderful, several in delicate water colour and more in traditional Chinese ink.  It was a book which opened up magical vistas to me.

So although I knew a little about Asia I had never been.  I have also mentioned elsewhere that I have always wanted to stand on the Great Wall of China and when I was first diagnosed with this cancer my first thought was that I will not die without having stood on the Great Wall.

Therefore, I was going.  And if I fell off the Great Wall or some other dire event befell me, then so be it.  Better to try and fail, than not try.

But after all these months of preparation I was emotionally frazzled and exhausted.  And, I am ashamed to admit, although not often given to self-pity, I did ruminate darkly from time to time when I heard other’s complaints about the amount of work necessary  for them to go on holiday;)

So, finally, after all these months, D-Day dawned, and miraculously, I was ready.

Related image

 

 

P.S.  I do not own any copyright to any of the images in this post.

P.P.S.  Chinese artist and writer Chiang Yee (1903-1977) came to Britain in 1933, where he lived and worked until 1955. During this time he wrote a successful series of illustrated travelogues using the pen name ‘Yaxingzhe’ or ‘Silent Traveller’. The books describe Chiang Yee’s life in London and Oxford during the turbulent years of the Second World War and record his travels to the Lake District, the Yorkshire Dales, Edinburgh and Dublin.  Illustrated throughout, with his own unique ink and watercolour paintings, sketches and poems, they represent a significant artistic, as well as literary project.Notably among the first Chinese writers to write books in English in the first half of the 20th century, Chiang enjoyed a prolific publishing career in Britain, in which he also published two seminal texts on Chinese painting and calligraphy, memoirs of his childhood in China, and several children’s books including ‘Dabbitse’.

 

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Well folks, I’m back home.

After what has turned out to be the most amazing, astonishing and over-stimulating trip of my life!!

Worth every second of the months of preparation (which really depressed me) and the brutal experiences of British Security (in my opinion).

I actually returned home last Saturday night but since then have been suffering from a bad viral chest infection which everyone else had either taken with them on the trip, or caught en route, but which I avoided when away, only to succumb once back here.   I think I know where and when i picked it up but that is for later in my narrative.  Add to that some jet-lag, a migraine and a mind so wildly over-excited that I cannot lie down to sleep without seeing China in my mind and dreaming about being overwhelmed by visual stimuli.

Seven air flights, over 12 Gb of photos, a notebook full of scrawled jottings which went everywhere with me, 5 hotels, a River Cruise and more coach trips than I could count.  Ancient temples, palaces, pagodas, giant Buddhas, cliffs of coffins, the largest dam in the world which necessitated our boat passing through a night of locks, pandas, carvings, costumes, social history, political history, tea ceremonies, dhows, sampans, gardens, tombs, archaeology, geology, natural history, rickshaw rides, hospitality in C15 Beijing Hutongs, the list goes on and on.

I am going to try to write my account of this trip, primarily for myself, so that I have a digital copy to treasure: however, I do hope that it will prove to be of interest to any of you who drop in to read it, but please bear with the parts which are boring to you and just skip them whilst making allowances for my personal memories.

As usual life will not stop to give me adequate time for this mammoth task: for instance I will be away for a while next week taking Eddie to see the Supervet.  But I will try my hardest to complete this diary.

When I departed I was 50% excited and 50% anxious: I nearly turned back at Heathrow security and as I stood there in public, humiliated, crying my eyes out, (not a nice look for a 70 year old woman whose hair is falling out) I was literally on the verge of giving up the attempt.

But I am so glad I went, I would not have missed this trip for anything, and I do so hope you get some pleasure from my account:)

 

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I have just seen this trailer for a new series by Jane Goodall and it looks wonderful.

Although it seems dreadful to utter the C word, we have had our first Charity Catalogues come through the post already so I might as well put it out there that I would like this Series for my present this year:)

https://www.masterclass.com/classes/jane-goodall-teaches-conservation?utm_source=Paid&utm_medium=YouTube&utm_term=Aq-Prospecting&utm_content=Video&utm_campaign=JG

Then I can go back to enjoying our wet, Spring-like August and praying for an Indian Summer through September and October to give me some kind of harvest this year.  It was too cold, wet and windy to plant out early, not really until late May, and it has come back in July, making for such a short growing season on the top of my hill.  The shortest I have every known.  I have just germinated some more French Beans and Sugarsnap peas because the last lot have not done well: these will need a couple of days to harden off and then I will plant them out, probably with fleece, to see if I can possibly get a bit of a harvest for the freezer.

Yesterday a photographer from the local paper came to take photos of me and Eddie:  he behaved like a pro but I was not very happy about having my own photo taken.  The photographer was a lovely young lady who said it made a change from football matches!!

Today I have been clearing piles of papers from several years ago and researching suggested supplements online for therapeutic ketosis and immune support.

Life has thrown us another curveball in that a house we have long had in the back of our minds for our old age has just come on the market.  But we cannot bear the thought of leaving our present home for at least four or five years.  So what to do?  It is unique, as our present house is, has even better views than we do and is just on the edge of the village instead of down the lane in a small hamlet.  The last owners of this other house have been there for 35 years so if we do not take the plunge now, will we lose the chance?

It is very expensive which might just take the choice out of our hands; we are having ours valued on Monday.  This other house is modern, smaller, and we would want to spend quite a lot and make some substantial changes, but it is on fairly level ground, five minutes from the bus, ten minutes from the doctor and shops, yet has a paddock which would take the geese and ponies, a stable and huge workshop garage, garden shed and is fully dog proofed.

However, it has street lighting which I hate, a busy road running past, and is semi-detached which we are not used to.  Oh dear, this is so very hard.  I know what I would say to someone else, but it is quite different when it is your own home you might have to leave, which you have loved and rebuilt over 40 years and where all your pets are buried and which has all the plants and trees from friends and family now deceased.  Here we just walk out of the gate onto a lane with trees all round, where we feel totally safe, comfortable and at home.  But good sense suggests that we think extremely carefully about our decision as in all the years we have been here, we have never seen another house, except for the one now for sale, which has things that we both need and want.

We went to look at it yesterday: it is not surrounded by trees as we are here.  When I went to bed last night our owls were hooting and chatting in the big trees outside the bedroom window. Our pheasants and badgers creep over the fields and through the undergrowth and the hedges we planted 30 years ago and wait for us to feed them every evening. How can we leave them?

But, if things go badly for me healthwise in the next little while it would be much easier for me to manage in this other house, and if I die before my husband, he could actually continue on in this new house whereas he says he could not manage here alone.  Oh, how hard it is to grow older physically but stay young mentally.

You have to admit that life on this hill is varied!

 

 

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Some of you may be aware of little Eddie, our Romanian Rescue dog.

 

He has several injuries resulting from a life of abuse and torture, the most obvious being the hole in his nose.  I am adding a link to his crowdfunding page at the end of this post on which you read more about his past.

The vets have now had the results of the tissue cultures and swabs: he has a bacterial infection (rather than a fungal one) which is responsible for the destruction of the interior of his nose.  In one way that is good because fungi are harder to eradicate than most bacteria. But the bad news is that not only is the infection in his nose but is also in the bones of his skull.  Therefore, if left untreated he will die.

The bacteria entered his system through the large hole in his nose and have been steadily chomping away internally.  The vet has two treatment plans ready to go, Plans A and B.  We all prefer Plan A which is the simplest and involves eight weeks of targeted antibiotics followed by, if the infection is defeated, plastic surgery to his face to close the hole and help his poor old nose.  Plan B will involve opening up his nose further, packing the whole space with gauze and inserting a tube down which antibiotic will be dripped twice a day, as well as continuing with the oral antibiotics.  When the bacteria are dead, his face will have to be reconstructed.  Sounds horrid, but the vet, a famous vet in the UK, is sure that it is possible to achieve a good result eventually.

Of course, the pet insurance will not pay anything because they state, quite correctly, that it is a pre-existing condition.

It was this TV vet who suggested the crowdfunding as he thinks Eddie is such a deserving case!  Actually, I think that perhaps the vet himself could have offered to waive or reduce the fees, but perhaps he will contribute to the crowdfunding;)

So, we begin medicating tomorrow and will be keeping our fingers crossed.

https://www.leetchi.com/c/money-pot-eddie-22587947

If anyone feels moved to read more about Eddie follow the above link: if you feel like contributing, however little, it would be a real act of kindness, but sharing the link would be really, really helpful too, so that as many people as possible have the chance to read about little Eddie’s amazing story.  Thank you:)

And, as for me, well I completed a 19 day water-only fast in June/July and now am intermittent fasting, eating only in a four hour window during the day.  All to see whether I can reduce or remove the cancer.  But during those four hours I eat for England, which is fun:D

 

Image result for greed for food(From google images.)

Husband has been taken on a weekend trip by our son so I am having an indolent and selfish three days doing exactly what I please, as I please.

Oh yes, and a man crashed his car into the driver’s side of my car yesterday, so something else to sort.  Really, I wonder exactly how many balls I can juggle at once!!!!!

 

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. . . and still on the Rollercoaster, but I think I am now travelling up one curve at the moment: fingers crossed that we continue slowly to the top and plateau there for a good long time.

Image result for rollercoaster cartoon drawing

 

I have worked hard and made some decisions and am feeling rather better.  But am under no illusions.  At least, I don’t think so.

After further research, and following messages and comments so kindly sent to me, I have made appointments with several people.

  1.   PTSD – I found a lady on the internet whose website I really liked.  We then spoke and seemed to get on well.  After I had made an appointment to see her two other friends mentioned that they either knew her personally or of her work and they spoke extremely highly of her.  She practices EFT (Emotional Freedom Technique) by tapping on acupuncture meridian points as one recalls trauma, to change learned emotional/body synapse response.  Image result for PTSD Emotional Freedom TechniqueI am told that this has really good results for many people and has become accepted treatment for many ex-service personnel.  If any of you have experience of this I would be grateful to hear of it.  My husband is sceptical and thinks it is some form of hypnosis:)

2.  I am seeing a tutor of Pilates who is going to help me develop the muscles around the area which will be removed so that I  will have some muscles left to help me move my leg.  Toes crossed this time, for success.

Image result for pilates cartoon images

3.  A local cancer charity provides taster sessions of various therapies free of charge so that one can find out what helps: so I have made an appointment with  a Medical Herbalist/Dietary Consultant who also happens to have a really good reputation and, it turns  out, is a friend/ex-colleague of another friend  of mine.  I am hoping to get some support for my Immune system to help combat the cancer cells and also to help me with my chemical allergies.

Image result for herbalist

4.   In a similar vein I am having a conversation with a Homeopathic doctor just to explore the situation and get a feel for which way I  want to tackle my  current problems.

Image result for homeopathy

5.   Finally, I have just had a lengthy conversation with an oncology nurse in the USA who has devoted her later career to exploring all the ongoing research and experimental trials in process.  After 20 years working with seriously and terminally ill cancer patients she felt that there were too many alternatives and adjuncts which were not being included in mainstream treatment.  She appeared to  understand my current medical situation at once, as well as understanding how I may have come to this point; certainly her  interpretation of my metabolism and the long term effects of past surgery fitted exactly with how I feel about things.   She suggested some tests which are not offered in the NHS and if I can afford them I think they may be very worth while. I  just may have to join Eddie with the crowd-funding!!!

Image result for mywellnesstutor

Since I have no large intestine and only a little part of my small intestine left, she and I feel that 50 years of impaired absorption leading to imbalances and/or deficiencies may have had  an effect on my immune system.  I also know that I have a SNP on one chromosome which prevents me from metabolising toxins.  Clearly not helpful.   She felt that this fact was a fundamental part of my current problems.  In other words, ‘my bucket is now full’!

So, one test she suggests would check to see exactly what the nutritional condition inside my cells is, rather than what is merely circulating in the blood as there can be many a slip ‘twixt blood, receptors and cell interiors!!

The second test would check a blood sample for any cancer cells which may be circulating: these are then cultured and 150 different  chemo, radiation, immunological and biological factors are tested against the cancer cells to see whether any of them appear to kill  the malignancy.

I am hoping that after speaking to all these people and taking the tests I will feel better informed to make a treatment plan which I can use, apart from or as well as, the surgery.

My feeling is to support and repair my immunity and nutritional status so that the tumour ceases to grow:  then I hope that the surgeon will agree to monitor me for several months more while I trial some of these approaches and see if by any chance the tumour will slowly decrease.   I know he will say there is no chance other than surgery which will be a difficult conversation.

However, since the accepted wisdom is that they have no idea what causes this type of cancer, and since none of the treatments available have any effect at all on it apart from repeated surgeries, I feel that my approach is as good/bad as theirs.

I have to make some decisions about what I am prepared to live with versus mobility/ability to do all the things which I am desperate to achieve.  This is going to be tricky as I do not want to be irresponsible and risk losing many years of good life, but neither do I want to be crippled and lose years to recovering from major surgery and living with an even more debilitated immune system.  I fear that all the drugs which would be used during and after surgery, may finally finish it off.

In the 1980s, when I had six surgeries and general anaesthetics and rounds of antibiotics in eight months, I was left unable to leave my bed for nearly three years.  The medical profession gave up on me and my then consultant just told me that I had the body of an 80 year old woman.  I was in my early thirties and was left to heal myself.  It took me a great deal of research and work to get out of that bed, and I was a much younger woman then.  You can see why I am not immediately trustful of medics.  No criticism intended, but if you do not happen to have an orthodox metabolism or fit the general mould it is hard to find someone who can relate.  Clearly I am some kind of evolutionary throwback.

It is true that action and decision-making makes one feel more in control and therefore stronger.

Image result for decision making

Thank you again to everyone who left me comments and who messaged me: the support feels tangible and very real.  I am still worried, scared and feeling inadequate to the task facing me but one step at a time.

PS All the images in this post are from Google Images: none are my own.

 

 

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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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