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Posts Tagged ‘cancer’

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.

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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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So . . . . the longest silence from this site?

What’s been happening?

As ever with life, good things and bad.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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All change

What a difference a day can make.

The three of us who have been supporting my friend J. finally managed to meet and exchange phone nos.  so we could compare notes.  J. has been telling us all different things, not contrary, just managing information so each of us had a piece, but no-one had the whole picture.

We managed to track down her niece through someone in her Church and then I  could speak to her and update her on everything.  Apparently she has been trying to visit but J. kept putting her off because she was frightened her niece would call a doctor.

Anyway, a couple of days ago we three decided that the time had come to insist to J. that she was seriously ill and we no longer felt we could cope with the increasing necessities of her care.  We were dreading it and felt terrible.

Just as I was preparing to leave home a box arrived containing these:

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They were from my oldest friend who lives in Southern Ireland, and consisted of white roses and mauve freesias which smelt glorious!  They were in mauve tissue, cellophane and tied up with a dark purple ribbon, so pretty.  The timing could not have been better: it made such a difference to my day and I felt so supported in the hard task which lay ahead.

When I arrived at J.’s house it was to find that she had spent the night on the floor beside her bed: the emergency services had to come and lift her and get her back into bed for us.  It transpired that she had not fallen but had been to the loo in the night, not been able to get up off the loo so had kind of slipped herself onto the floor and crawled out of the bathroom, across the hallway, through her bedroom to the bed but not been able to get up into bed so had very sensibly pulled the covers off and tried to roll herself into them for the night.

I’m afraid that this could not have been more providential.  We used this as an indication to J. that if she did not see a Doctor now and take control of her treatment she risked being taken to Hospital over some future incident and would lose control over her treatment.

She understood the sense of this and agreed easily, without us having to insist that she was very ill or that she has cancer.  The conversation we were dreading.

At this point her niece arrived unexpectedly for us all, and we sat with J. while we waited for the Doctor to visit.  A lovely, gentle, young, lady Doctor arrived while J. was having a nap so we were able to fill her in on the whole story.  Then she went to see J. and made her assessment.  Never did she insist on any treatment that J. did not want nor did she insist to J. that she had terminal cancer, she just decided to enlist the support services of the Palliative Care Team.  She left at 5.45 pm and by 9.00 pm a night nurse had come to sit with J. for the whole night and District Nurses began to come in the very next morning and will be coming twice a day to bathe, dress and help J. get up/go to bed.  J. now has a hospital bed in her room which moves and sits her up at the touch of a button, a night nurse and helpers twice a day.  Since the weekend was a Bank Holiday over here the Social Services could not be brought in very easily but we are hoping they will come on board this week to come and clean and cook.

J. says she feels much more secure now and seems so happy: she says she has the best of both worlds, support from the NHS and her continuing treatment from the homeopath and herbalist.

Although the day went so well it was actually very traumatic: J. told her niece that she was her Executor and I managed to track down J.’s will which is in store with an on-line will-writing company.  Since then I have had long conversations with her niece about what I know and what I can help her with after J.’s death and we all feel that we are working together.

However, J. is still adamant that she does not have cancer and that all her symptoms are just from an exhausted body which has fought off the cancer.  She has just rung her pupils to tell them that she will begin teaching again in five weeks!!  The Doctor told us that nothing was definite but in her opinion J. only had a maximum of between 3 and 4 weeks left to live.  In my experience night sitters are only provided in the last two weeks of life but perhaps calling the emergency services made a difference in this situation.  Yesterday J. asked me to contact her builder to get him to come and put a coal bunker at her little cottage so that she would have fuel for her fire when she moves in.  I have never met this kind of complete denial before.  It appears that she is not even kidding herself but really and truly believes her own reality.  Ah well, if that is what is necessary for her, it must be the kindest way to cope.

I finally reached home at 7.30 pm and was so tired I could barely crawl into bed myself.  A mixture of reactions I expect.  But as I walked into the kitchen the smell of freesias was sweet and fresh and the flowers had opened out:

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Where would we be in this world without kindness, compassion and thoughtfulness.  I have seen so much of all these today and am truly grateful.

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Apologies and catharsis

WARNING  Graphic descriptions of ill health later on.

I really need to rename this blog, something along the lines of ‘intermittent thoughts’ or ‘unreliable synapses’.  I have again been absent from blog world for several weeks, leaving unfinished business.  I do apologise.  Again.  The end of A Treasure will be coming along, soon . . . .

One huge 70th Birthday party down, which involved gathering family from all over the country, some of whom had not been in the same room for thirty years, and others who did not want to be in the same room (I am now ready for the United Nations to call for my help); Easter celebrations, now to be done twice over since some of the young are divorced; a horrible virus which is taking a lot of getting over; and helping to care for a dying friend – are what has been occupying my time.

Good news:

1.  Said party went off well, and all held that it was a great celebration.

2.  Grandson is loving his tutoring and the tutors seem to value him.  Great, on so many levels.

3.  I managed to fund middle grand-daughter a short trip to Prague with 17 of her Uni. friends: she has had a lot of issues to deal with, still does, but she had a fabulous break, loved it all, and has blossomed from the experience.  She texted me one day from a cafe, sitting in the sunshine right beside the river, with the view of the city in front of her and a chap playing covers of  Dylan beside them.  She now knows that there are other cultures, cities, people, countries – that this is not all there is.

Bad news:

I need to write the following because I am desperate with bottled-up emotion but I am not sure whether it is appropriate for publication.  So please bear with me if you feel it is self-absorption and just give it a miss.

My friend and flute teacher of many years is dying.  I first mentioned this in a post on 21.01.2012 and more on 22.02.2012.

My friend followed her alternative path of cancer treatment. After an initial  diagnosis of aggressive, advanced breast cancer with a problematic prognosis she has had a good two years of feeling very well, full of energy and doing all she wanted. Her cottage is nearly, so nearly finished.  But she has not been able to move in, and she never will now.

I am writing this to get it out of my system, not to throw any scorn or doubt on any particular way of facing and treating cancer.  The last thing I wish to do is to disturb anyone who is facing this battle, whatever path they may take.

But I am troubled.  My friend began with advice from a homeopathic practitioner and then added a herbalist into the mix.  She has followed a regime of diet, supplements, oxygen therapy, exercise, lymphatic massage, thermal imaging (instead of X-rays), and black salve applications.  She has followed everything to the letter.  And has no complaints.

But since Christmas her health has begun to deteriorate: the homeopathic practitioner has had personal problems and has proved more and more unreliable this year, just when my friend really needed support.  Unreturned phone calls for help, missed appointments etc.  The herbalist has proved a tower of strength and support.  However, for about two months my friend has been losing a huge amount of weight, has become bright yellow and waxy, has almost daily heamorrhages  and developed an immobile shoulder and arm on the side of the breast with cancer, followed by lymphodeoma of that arm.  This has progressed to advanced lymphodeoma of both legs and terrible trouble breathing.  During this time she has needed more and more help from me and two other friends, which has now progressed this week to helping her to the loo, helping her get out of bed, doing her washing, shopping, cooking etc.  I have taken much advice from nurses I know, and they are all of the opinion that she has multiple metastases and only a few weeks left to live.

However her two ‘advisers’ came to see her this week.  One said that she should take more exercise and that otherwise there was nothing wrong and the other said that all cancer has left her body and the symptoms she has are due to the strain her body has been under in fighting off the cancer.  No blood tests or scans.   She believes them.  And in fact is cutting off all family and friends who suggest otherwise or that she seek any medical help.

This morning I ran several errands for her and was shocked at her appearance.  For the first time she did not even have the energy to sit up in a chair and be dressed.  She ate her lunch and then went back to bed.  She looked haggard and did not even have the strength to hold up her head.  One ankle has developed a hole through which liquid is draining.  She thought this a good thing: she was pleased saying that now the water could  drain out of her legs.  I could not prevent myself replying that actually it must be managed very carefully because serious infection was always a worry with lymphodeoma.  She was not pleased with me.

I have made countless gentle suggestions and taken her to a cancer support clinic but apart from asking for help with some financial benefits she would not talk to the nurses.  She has now run out of money and will not let nurses in to help her or the Social Services who would clean and give her personal care all of which are free in the UK.   So, this is her way, and her decision.  Not mine. Not mine to pressurize or distress her.

But I know she has several workmen at her little cottage trying to finish it off for her who all contact me and ask what is happening, especially financially.  There are many balls up in the air there.  She has little family, but her one niece who is concerned, is being fobbed off.  This niece is her executor but knows nothing about the contractors and builders at the cottage, or the architect, or the stove firm, or kitchen cabinet maker, or all the pots of paint waiting to be used.  She knows nothing about my friend’s wishes for the cottage and its future.  I know nothing about her, neither her name or contact details because my friend will not let any of us have them.

This niece knows nothing about my friend’s wishes for ‘end of life care’.  If my friend does not write an Advance Directive the time will come when decisions will be made for her by assuming she is no longer rational.

I continue to visit, to help, to listen.  To advise if it is wanted.  But the denial is complete and I sit there upset, concerned, anxious, irritated and frustrated because I know that very soon indeed the three of us will no longer be able to give her the care she needs.  And seeing a friend whom you love in such physical distress, moaning and coughing and not being able to breathe, is terrible.  And the only physical help which would mitigate these symptoms and give her some quality of life is negated by two therapists who insist that she is well on the road to recovery.  They make me so angry.  Are they actually criminal or merely self-deluded?

In fact I no longer know whether she herself is just desperate or whether the cancer has actually spread to her brain.

Four years ago I cared for another friend with terminal cancer. It was very distressing but so different because it was acknowledged by all, a team of us worked together to give her the very best care, and she died peacefully and comfortably in her own home as she wanted, with the regime of her choice, surrounded by friends.

But this time I cannot help my friend to have such an end.  She is either going to collapse in the bathroom and die from hypothermia, her heart is going to give out from the strain of trying to breathe, she is going to drown or die of some massive infection.  All of which could be mitigated hugely with the correct interventions.

Do I blame my friend for her and my distress?  For her blind faith, for her intransigence?  Or her two therapists for their, to my mind, criminal comments?

What do I do with these feelings, with this complete helplessness in the face of such suffering, this anger?  What to do with compassion that has nowhere to go?

I and another friend of hers cannot bear to pick up our flutes.  Now especially when we need to play the emotion out, we cannot bear to look at our instruments.

I just hope she dies quietly in her sleep one night from heart failure.  And that it happens soon.

 

 

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Six months on, and what is the state concerning my friend and her cottage.

(The end of the lane and beginning of the footpath climbing up into the hills):

Much paperwork ensued and consultations with Land Registry and Solicitors.  The cottage needs considerable renovation to make it how my friend would like, so she never expected to be able to move straight in.

Her house is up for sale but the housing market over here is fairly static and so far she is still in her original house but that is fine, it gives her plenty of time to make the cottage snug and to gradually dispose of possessions: a quart into a pint pot just will not go.

Well, first off, we had a tussle with the Land Registry concerning ownership of the side garden, coal bunker and concrete hard standing.  We soon dispensed with her solicitor who just moaned and said nothing was possible.  I became very knowledgeable about land law concerning old property!  Since it was built before 1780 the cottage had never registered its land rights, just absorbed and used the land around.  I will not bore you with the whole dreary procedure, but it involved us in an appeal for which I carried out a professional botanical and archaeological survey: we ended up with land rights over the hard standing, the coal bunker and parking rights at the end of the garden and permission to use the garden as if it were hers.  If there had been a gate at the end of the garden she could claim that permanently, since it is walled round, but there was no gate.  However, if my friend puts a gate up now, the land will become hers in 12 years time unless someone appeals against it.

Then I suggested she try to buy a strip of land behind her cottage from the local farmer.  Hers is one of three and the oldest: they were all used as Work Houses and as the demand grew, a new cottage was built along the row.  Hers is at one end. The farmer’s field abuts the cottage making the back wall damp:

if she can have the land she can dig back, have a retaining wall constructed, and put in windows and a back door and have storage space out the back.  This would also help with drainage in case of heavy rain bringing water off the fields. This is what the other two cottages have done.

I learned this week that the farmer has decided to sell her the strip of land she wants.  Wonderful.

Talks with the planning officer are ongoing: the architect submitted plans for a first storey  extension over the existing side extension, but they were refused.  In my experience face-to-face is always the best way to go, and I suggested that my friend go straight to the planning officer bypassing the architect, and invite the officer out to view the cottage and have a cup of tea and a scone while they chatted about what might be possible.  My friend has found out a great deal of the history of the cottage, loves it dearly, and wants to do nothing that might spoil or compromise the cottage and its architecture.  The planning officer needs to know this.

I also learned this week that they have spoken and the planning officer has agreed to come out for a visit and a chat as she has some leave due. They got on well!!

After Christmas husband and I worked on the cottage for a day, removing the modern fireplaces and exposing the old stone hearth.  Since then a builder has been employed who has made the internal flue safe, restored the old stone lintel, removed some modern internal walls, repaired the chimney, and put leading across the join with next door’s roof to repair a leak.  He and his sidekick are helpful, friendly and anxious to please.

He has also removed some old damp plaster and revealed the original, very wide floor boards.  I hope to go round this week and take some photos which I will post here when I have them.

It is all very exciting and my friend is ecstatic.  She has ordered a range to fit into the exposed fireplace – cherry red – and found extra small machines for the kitchen:  a tiny electric cooker to add to the range’s possibilities, a narrow fridge/freezer and dishwasher.  She has had enormous fun looking through magazines, contacting suppliers and finding just the things she wants.   She has got to know her neighbour, let’s call her ‘S’: ‘S’ is thrilled to have the prospect of a live-in neighbour rather than the holiday cottage which she thought it might become.   This, unfortunately, has just happened to number three.   S has lived there for many years and feeds the wildlife:  baby pheasants wander along to pick up bird seed which has fallen down from her many bird feeders, as do baby ducklings and moorhens from the stream.  Parent birds leave their fledging babies at her feet while they go off to search for food.  In fact, the local wildlife is so used to her that even the mice and voles in the stone walls come out when ‘S’ comes with little pieces of meat for them to eat.  S’s garden:

She has feeders and bird tables outside her cottage and also hanging from a tree in a nearby field.

To reach this tree she has to cross the little bridge

and climb over the stone wall, which she does on a daily basis.

But this is a bitter-sweet story.

We learned a few weeks ago that my friend has cancer.  Aggressive and already in the lymphatic system.  Devastation.

The medics  swung into immediate action with a five year plan of various interventions and already begun chemo.  I cannot go into details here, but they are giving it everything they have, I cannot fault them on that.  But my friend has decided that she would rather go down the alternative route and has been persuaded by an alternative treatment concerning cyanide in apple pips and apricot kernels as a way to kill the cancer cells, so she has given up the chemo. and is not taking the medics up on their traditional treatments.  I cannot begin to give advice, but this worries me greatly.  All I could do was suggest that she talk widely to a selection of different practitioners and medics. before making such a life and death decision.

Of course her feelings must be desperate: I try to offer support.  The cottage is proving a distraction for her and she is bravely pushing on with plans for the future. But I have such a feeling of powerlessness, pain and sorrow.  This seems to happen so often to people: you see someone on the brink of a lifetime’s ambition, whether to see grandchildren grow up or follow some other dream and, wham! it is snatched away.  The unfairness.  I know the philosophers accept that life is random but sometimes it does not seem so, it seems very personal maliciousness.

Yesterday morning I heard that another friend’s husband died in the night after a long struggle with cancer and next week yet another close friend will get the results of a biopsy.  I am aching for them all, but the sun is shining, the birds are singing and tonight I am going out with daughter in law and grandson.  As a blog friend recently said, “make the most of each day”.

Sorry to end on a sad note: but perhaps there is a silver lining.

The cottage, the stream,

the wildlife,

(by the way, the white pieces hanging off the tree are not plastic, they are sheep’s wool from the sheep presently in the field!)  the kind neighbour, the helpful farmer, the lovely builders, the considerate planning officer, the views

are all still there.  The dream is still there.

And whatever the future may hold, perhaps it is worth feeling the dream within one’s hand and taking pleasure from planning for it, rather than never coming close at all.

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