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Posts Tagged ‘PTSD’

. . . 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.

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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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I’m feeling  euphoric at having completed some of my most pressing tasks.  It is, of course, quite false, since I should immediately fall on to the next on the list but I am allowing myself to come up for air.  Sent off my TMA 07 today, only one more assignment to go for the OU but then lots of revising for the exam.  However, the next assignment must be in on time: one day late and you fail the whole course.  No exemptions, no excuses.  I will have a look later today to see what it needs me to do. Then the next great push.  No peace for the wicked.

Last weekend’s tutorial was very helpful: the OU paid for me to travel by taxi to a neighbouring city and the driver was very interesting.  I was sitting in the back working on analysing a score, headphones on whilst I listened to the music.  Once, I looked up and said that he was welcome to turn on his radio, but he said he had not wanted to disturb me.  Then he asked me about the music and told me about his guitar playing and how he could play anything by ear but could not read music.  We had a long conversation and I hope I encouraged him to take some courses he would enjoy: he just had no self-confidence.   I told him I taught adults old and young, and especially liked teaching people who had had bad experiences at school and had no self-confidence.  It feels like helping them gain a second chance and I really enjoy that.  It turned out that he suffered from a chronic illness similar to one I had for many years so we could discuss modern remedies and operations I had had in the past which might be on the cards for him in a couple of years.  Such serendipity: two strangers thrown together for an hour, and each helping the other in different ways.

And best of all from my point of view, I was so engrossed in his problems that I had no chance to see where we were going and for the first time in 40 years I was able to enter that city without shaking, trembling or feeling faint.  I suffer from something rather like Post Traumatic Stress Syndrome where that city is concerned.  I was terribly ill there and had some near-death situations in the hospital: several long spells as an in-patient with dreadfully painful interventions and 8 operations over the years have left me with a problem entering the city.  Even when I am not aware of it mentally, my body remembers, and I am surprised every time by the sudden emergence of symptoms of panic and stress when I drive up by car or get off the train.

Anyway, being so absorbed in someone else was clearly just what I needed.  On the way home we discussed Richard Dawkins, Darwin, Evolution, Politics, Religion.  He earns his living as a taxi driver because his health is up and down: this way he can work when he is well enough, but can rest if he is having a bad day.  When he dropped me off at home he actually thanked me for some intelligent conversation and said he would be very happy to take me next time.  Turns out he will be going on holiday that day: shame.

The tutorial was good, and we covered some revision strategies for the dreaded Exam in October!  The next tut. will be the last for this year, this tutor and this course: so she suggested that we arrange to go out into town after our work next time and find somewhere nice to have tea and a bun to celebrate the life of the course and mark its end.  Another test for me, as I am not sure how I will cope actually going into town and walking about: a bit anxious about that one.  I don’t want to seem ‘silly’ in front of other people yet I don’t want to miss out on the group tea.  Its very difficult for people to understand what my hospital experiences were like since I have not met anyone yet who went through similar ones: I was just too young at the time to have peers who could empathise.  Since the actual nurses found it difficult to deal with, and they were professionals, I don’t expect anyone else to have any idea: and who wants to talk about miserable things like that anyway?  I certainly don’t want to.  So fingers crossed that I manage to put up a good front on the next visit and don’t suffer too much afterwards.  These triggers can set one off on flash-backs for weeks.

At least one other member of the group wants to do the same course that I hope to take next year: it concerns the origins of musical notation and the progress through history.  One of the projects is actually to take a historic musical manuscript and translate and edit it for modern musicians to perform!  Sounds absolutely fascinating.

She lives on the other side of the county but it would be fun to keep in touch by e-mail at least. She plays the flute too.  So, fingers crossed for the rest of this course and the exam:  we will both have the Dip.Mus. if we pass  this and next year’s  courses!

Next year’s course does not begin until the Autumn so I would have time to work in the garden through the Spring and Summer which will be lovely.

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