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What to believe?

Two weeks ago I had another MRI scan.

According to the measurements on the second Radiologist’s report the tumour has shrunk by nearly 1/3rd. In only four months!!!  I was thrilled to bits, assuming that some of all the measures I have been taking, have had an effect.

Then last week I was down to see my Consultant at the Royal Marsden for a follow-up appointment in which we were due to discuss dates for surgery.

Because of my various chemical allergies surgery is problematic for me.  In the euphoria following the second MRI scan I had been hoping to postpone surgery for a good while, and perhaps even change the nature of any operation depending on how much more the tumour might reduce.

His Registrar said that she thought the tumour had not grown much.  Grown? Grown?  Excuse me?

Then the Consultant himself came in and said that things were much the same as before.  WTF?

I mentioned the differences in measurements in the Radiologists’s reports but was told that it was because they assumed that different places had been measured.  But my Consultant had not seen the MRI scan, only read the report.

Surely a Radiologist would use some kind of positioning system so that all future scans could give an accurate measurement of any changes, or what is the point?  Surely a health professional would be incredibly careful since surgery could depend on his/her readings?

I am/was confused.

BUT, somehow the whole tenor of the consultation was different from my last one.  Suddenly the urgency, the drastic nature of treatment, all were changed.  I was asked if I would be happy to wait for surgery and let them monitor the situation for another four months.

Since this was exactly what I wanted, I was happy to agree:)

So, what do you think was going on?

Personally, I think that they could not believe the apparent reduction since they had not seen this before.  But have they had a patient with this type of cancer who has done the things I have?

At least this is what I need to believe.

But I am rather unhappy and confused: some validation would have really helped as the things I am doing are not easy and it is a lonely struggle swimming against accepted health opinions.

Still, onwards and upwards.  I have great excitements coming up soon as I leave for China on Thursday 5th October.  Even writing this sounds unbelievable.  And checking through all my travel documents today has thrown me into a fever of anticipation.  I am going with a friend as my husband is not interested in going to China: we begin in Shanghai for a few days, then fly to Wuhan where we get on a river boat to cruise up the Yangtze for five days passing through the Three Gorges en route.  After that we disembark at Chongqing, fly to Xian to stay, then fly on to Beijing for several days.  Amongst other things we hope to visit the Panda Breeding Station, the Terracotta Warriors, the Great Wall and most of the other usual tourist sites with, hopefully, some less usual sites thrown in too.  AndImage result for chinese fisherman with cormorant I so hope to see a fisherman with his tame cormorant sitting on his shoulder!!

When I was given my diagnosis in June this year, I was resolved that come what may, I shall stand on the Great Wall of China during my lifetime.  I postponed surgery from a suggested date in July until this trip was accomplished and now it looks as if it may even happen.  Gosh, I am so, so lucky:)  🙂

 

 

(Brochure picture from Viking Cruises ‘Imperial Jewels of China’ Tour.  Their copyright.)

A bit of a break

A week ago I managed to grab a few days by the sea, courtesy of my sister and brother-in-law:)

Exhausted by the constant round of health practitioners, I was worn out and desperate for some ‘down’ time.  When I finally arrived and unpacked, I fell into bed with a good book, and believe it or not, there I remained for 36 hours.  I ached in every muscle and was just too tired to do anything but sleep and read.  Luckily I had taken home-made soup, burgers and veg/salad so had no need to go out unless I wanted to.

However, I finally came ’round’ and was able to relax and enjoy the fabulous view from their windows.

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It is such a pretty and comfortable caravan with stunning views:

 

A walk round the site and the surrounding countryside gave an overview of the site itself:

It is a mature site with hedges and trees surrounding the caravans which is lovely!!

In some sheltered sunny spots I saw lots of butterflies, Red Admirals in particular.

 

 

And one can walk directly from the caravan on to the cliff path through lovely countryside towards Bempton Cliffs which is an RSPB (Royal Society for the Protection of Birds) site, of which I am a member.  We had violent winds and rain for part of each day, followed by glorious sunshine.  Which, of course, gave us lots of rainbows.  This was the view from the Dining Area of the Caravan of one such, looking towards Bempton Cliffs:

 

 

Of course I took myself for a happy day’s bird watching:

 

 

 

 

 

There is a huge colony of Gannets, but I also saw Razorbills, Kittiwakes and Herring Gulls and others which I did not stop to identify, as I was just glorying in walking and smelling and watching, in the sunshine and the wind and the sea air.

In this next one I can actually see some of the colours which Monet saw in water, all the purples, aquamarines, mauves, greens and blues.

 

On one day I went to Flamborough village and bought fresh fish from a fisherman, and it was simply gorgeous.  I bought some fresh runner beans from the local greengrocer and had a super chat with both her and another customer about goose eggs.  Then I called into the local coffee shop for a cup of tea and some homemade tea-bread: dogs were allowed in which was fun and a pleasant change from all the ghastly health and safety hype.  How can you ever develop a good immune system without coming into contact with germs?

All in all, I had a wonderfully relaxed trip with no unexpected events (bliss) except that one very sad and lonely widower propositioned me!!  He said he was looking for a rich widow, and I could truthfully explain that I was neither:)

Ho hum, I rather thought that I was safely past the age when such things could happen!!

 

Saving Eddie

I have posted before about our two Rescue Romanian Dogs.  I have also mentioned the plight of one of them, little Eddie who was abused and tortured: he had his tail cut off, was hung from a tree in a metal snare and left to die

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and then hit on the head with a metal spike, to kill him.  This missed his skull but made a hole in his nose through which a bone and tissue destroying bacteria has entered, destroyed the inside of his nose and is now in the bones of his skull, giving him a life threatening disease: we are crowd funding to try to raise money to pay for life saving veterinary treatment for him.

 

We are being supported by a local charity who are helping by circulating information: all their Trustees are donating and trying to raise his profile.  Two local Newspapers have run stories on the dogs including with photos of me, which I am not keen on but they wanted them, so there we are.

(My recently dyed hair to celebrate my 70th birthday is showing up well!!!)

Now a UK author, Milly Johnson, has joined in and is holding an auction on ebay giving bidders the chance to name a character in her 15th book and to liaise with the author about the character development, receive signed copies and a hamper of goodies:

so if you like her books you might like to go over and check it out at

http://www.ebay.co.uk/itm/172832677119?ssPageName=STRK%3AMESELX%3AIT&_trksid=p3984.m1558.l2649

Several of you kind readers have already donated and I am so humbled and grateful by your support and that of people locally who know about poor little Eddie.

Given the awful things happening all round the world I sometimes question whether I should be trying to raise money for one little dog rather than for other charities, but as has been pointed out to me, this gives some people a focus, an idea of something practical they can do to right some terrible wrongs, and raises the profile of stray dogs in Romania.  It also makes people feel happier knowing that a fairly simple gesture will make a huge difference to another sentient being at a time when a lot of us feel powerless to help millions of other animals and people.

At the risk of boring you silly, I will once again leave the link to the crowd funding page at the end of this post for those who have not visited here before, and will end with a photo of Eddie sending you all lots of licky kisses:)

 

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

 

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!

 

 

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!!!!!

 

. . . 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.

 

 

The Cancer FunFair

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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