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Archive for the ‘medical’ Category

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.

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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.

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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.

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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!!!

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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.

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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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Trying hard to exude confidence and calm I had a lift to the station and registered at the Assistance desk.

I was very heartened to be met by a young woman who greeted me by name holding a form with my details on it. I was whisked away in a wheelchair accompanied by a rather worried husband, and put on the train, followed by my suitcase. We set off gaily waving goodbye to ‘other half’ who says he is looking forward to some bachelor time!!

The first part of this trip was completely uneventful and when we drew into St Pancras there were two young women waiting on the platform for my coach. Apart from having to look in my suitcase to find my Eurostar ticket which I had mistakenly packed (senior moment/nerves) all went smoothly and I was wheeled straight to Eurostar Assistance.

However, here we met with a problem. My suitcase was weighed and came in at 21k. The weight limit per case had been changed (I was told it was hidden in the small print) and although I could have taken two cases totalling 30 k my one case was not acceptable. To have the case go with me on the train would be an extra £30.00 each way. To add insult to injury I had specially chosen the one case as being easier for those helping me. And it was half full of medical supplies, not geegaws or nicknacks!

I had a good chat with the luggage booking clerk the upshot of which was that he disobeyed all the rules, refused to take payment saying he felt it was discrimination and insisted on taking it to the train personally and putting it on for me. He said that some of them still had a heart despite the corporate ethos. We ended by discussing particle physics, the state of health of his mum (why does everyone appear young nowadays?) and he said what a shame I did not have longer before my train or we could go for a coffee and discuss string theory!

Once again I was helped onto the train and happily settled: my gluten-free meal came as ordered and all went smoothly until Paris where two gents were waiting for me as the carriage drew in.  They whisked me and luggage straight to the taxis where they had already booked me a taxi which was waiting at the front of the queue.

There followed a drive filled with panache, hooting and hand gestures during which I sat back and enjoyed the tree-lined Boulevards, the Circulation, the Seine, the bridges, and so many old haunts.  We flashed over the Pont Royal, past the Musee d’Orsay, down the Left Bank and turned into the 7th Arrondisement where nary a riot or strike was in evidence

Quel surprise!

My friend had arrived earlier that morning from the airport and opened up the flat and came down to open the door for me after the driver had reassured himself that someone was meeting me.  He held up the following traffic for me and the crutches to get out of his taxi insisting that there was no hurry at all.

So there we have it: all my fears were groundless and in fact I was bowled over by the kindness and patience of strangers (exactly as Jocelyn predicted, omniscient woman!)

So, here I am, back in Paris, with my great friend, and we will just have to see what I can manage. Or not.

 

 

 

 

 

 

 

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It was some time before I could even get into a vehicle to go and have the MRI. This was a worry but using a fearsome leg brace (all straps, metal and Velcro pads and looking like something from the first world war) I managed with pain and difficulty to get into our son’s car and be ferried to hospital.

I was duly transferred to the waiting area where a nurse enquired whether I had anything metal about my person. I explained about the leg brace and her immediate response was that it would have to come off.  I agreed that in a heavily magnetised machine it would not be a good idea but that it would have  to remain in place until I was lying on the bed of the machine.

She exclaimed in horror that this was not possible as the metal in the brace would interfere with the magnets!! I was equally adamant that I could not move even half  an inch without the brace because of the pain.  Stalemate.

At this point I was getting upset and tired from the efforts I had made to actually get there as well as the pain levels so Isuggested that I went home.

“But you need the MRI”, she exclaimed. Well, yeah . . . .  Duh?

I remained silent and immovable, not hard in the circumstance, leaning against the wall pinned to my crutches.

Luckily she gave up at this point and said she would go and speak to the Radiologists. 20 mins later and no signs of anyone so once more I was preparing to leave: by this time I and the wall had been making friends for over an hour.

When, out of the blue a handsome young chap in his early thirties came hurrying down the corridor and reminiscent of Apollo 13 said, “I gather we have a problem?” He was one of the Radiologists. I explained and he grinned and said there was alway a way round everything and that he  and his colleague were two strong young men and he was sure they could cope. I almost fell into his arms then and there:)

So I hobbled into the anteroom of the MRI machine and was asked to leave my crutches at the door, whereat each chap took an arm and I was regally escorted, hopping like a rabbit, towards the magnets and the flatbed of the machine.

Very slowly I inched my way onto the couch, oohing and aaahing the while until finally the leg was in position.  Then the fun began.  I was just about to remove the brace when they urgently asked me to stop.

The lovely blokes said that they would have to take the leg brace off together, on the count of three, one holding each end to avoid it being whipped away and dragged towards the magnets and into the machine.  The whole process was so funny as they gingerly undid the straps while holding onto the body of the brace for dear life and then in one smooth movement pulled it away and took it out of the room.  So gentle, kind and understanding and making no issue of the process at all.

From then on all was plain sailing and an hour later I was ringing to ask for my lift home.

The results came back ten days later, I do not understand them yet but I gather that a lot of damage has been done and I have been referred to an Orthopaedic consultant. Given that I have allergies to painkillers,  antibiotics and anaesthetics I am unsure as to my options.  However, one lesson I learned from this scan was that with a willingness to find a way through hopefully all is not yet lost:)

Here’s a toast to helpful young men (and women) wherever they may be. Cheers chaps!!

 

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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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I just had to share the following:)

In my life as an Ecologist I was extremely interested in slime moulds.  Their life cycle divides into animal bio/chemistry in one part and then changes into plant bio/chemistry for another.  Fascinating.

Anyway, not to bore you further with my esoteric fancies, I heard today about the Sea Squirt: apparently this has similar-appearing properties.

This story was told on BBC Radio by an eminent and rather self-deprecating brain surgeon.    When juvenile the sea squirt swims about rather like a tadpole and has a brain.  When mature it looks for a suitable rock, affixes itself for the rest of its natural life and lives a vegetative-type lifestyle

Copyright Jan@Messersmith.name  Reproduced by permission from http://www.messersmith.name/wordpress/tag/sea-squirt

 

– and – wait for it – reabsorbs its brain!

Therefore, clearly brain function is necessary for movement, and when all movement ceases, no further need for a brain.

(This has ramifications for brain senility of course, but this is not the point I am making here, but do take away from this what you will!)

At the end of the programme this ditty was read out, which just broke me up:

I wish I were a sea squirt

So, when life gets a strain,

I’d veg. out on the nearest rock

And reabsorb my brain.

Some days I am clearly a sea squirt:)  How about you?

This gem was composed by the brain surgeon’s wife, Kate Fox, herself a social anthropologist.

PS The brain surgeon is called Henry Marsh, works as a senior consultant brain surgeon at St. George’s Hospital London and also volunteers in the eastern Ukraine.  Worth googling him and his latest book, Do No Harm.

  http://www.theguardian.com/world/2014/sep/12/henry-marsh-british-brain-surgeon-ukraine

http://www.newstatesman.com/lifestyle/2014/03/life-and-death-his-fingertips-watching-brain-surgeon-work

PPS There is a lot of interest in the family of sea squirts at the moment both from the point of view of brain function and senility (alluded to above) and as a new source of antibiotics.  Worth an investigate if you are interested.

PPPS if you go to the website from which the above photograph comes, at  http://www.messersmith.name/wordpress/tag/sea-squirt/, you will see wonderful photos of sea life and many more sea squirts.

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