Not short changed at all

26 03 2013

Well, I had a choice this morning; study the 6 Neuroglia of the Central and Peripheral Nervous System, or write my blog…

So anyway, just before our last visit to the Utterly Crap London Hospital (UCLH) I had asked the Universe for an Angel to take care of Alistair at the hospital consultation. As you will no doubt recall from my previous post about that particular visit we actually got probably the worst service and treatment you could ever not wish for, it had no celestial tones to it in any way shape or form. I wondered that day and the few following at the seeming lack of universal intervention but as I write this now I realise I merely showed my own human lack of faith and belief!

As a result of that appalling consultation Alistair, in his usual solution focused fashion, spent the new few days researching various Specialists, procedures and interventions that ‘made sense’ to him and his body and would make a significant difference to his life and the current difficulties he is experiencing. Its surprising the amount of pioneering techniques there are out there that are not made readily available by the No Hope Service.

These hours of personal research coupled with an incredibly kind donation to cover the cost of any necessary surgery lead us last night to see probably one of the coolest, nicest, most personable consultants we have ever had the pleasure of meeting. This guy strolled down the corridor  in his trousers, roll neck pullover and his biker boots and greeted us as if we had just popped in to see a long standing friend for a cup of tea! An angel, no doubt at all in my mind that the Universe had its hand in creating this meeting, no doubt at all.

During that 30 minute consultation we were both almost moved to tears on several occasions; relief, being listened to, having our desire for alternative therapy where possible validated and all in such a laid back non pompous, non medical model rammed down our throat sort of way was quite overwhelming. It turns out that in Germany (and no doubt other non UK countries too) when they study medicine they also study Homeopathy, Acupuncture and other alternative approaches to  medicine too. He totally got why our experience at the Utterly Crap London Hospital (I know I’ve already put it in short form but I like saying it) was so difficult for us, he laughed and said, ” yes of course, it is completely old school, old medicine”.

So, I am pleased to announce that Alistair will be able to pee again after the 24th April 2013. All he and I have to do between now and then is keep him well, infection free, rested and in good emotional, physical, mental and spiritual health so he  will recover with ease.

Looking back, I can see that it was important to get the rough treatment at the UCLH with the monkey not the organ grinder because otherwise we would not have found this amazing alternative procedure that will indeed be life changing for my darling man.

Once again, the Universe has been instrumental in guiding us to the right place. Amazing.

You never know around which corner lies success

18 03 2013

DSCN0396Before we begin, I had better introduce myself lest you are drawn to think that Rebekah has taken on a somewhat masculine tone to her writing voice: I am Alistair, Rebekah’s husband and she has kindly asked me if I would like to do a guest blog spot – or whatever its called in blogging parlance.

I am delighted and honoured to contribute to Rebekah’s lovely blog. Reading her thoughts usually brings tears rolling down my face as she tells our story of living in Gladys fulltime and our cancer-healing journey. I don’t know why, perhaps it’s that she tells it in such a loving way or maybe its that for such a small person she is so much of a source of strength and inspiration to me.

I have long dreamed of living an alternative lifestyle. My daydreams have often wandered to times gone by perhaps in previous lives, of simpler times. I would have long ago built a Hobbit house in the forest if I had the money to buy a bit of woodland.  I have wanted to get away from Banks, Mortgages, Politicians and bullshit for a long time.

The Dalai Lama  (or Dal as I call him) says that people who lead the simplest lives are often happier and more contented than those that lead the far more complex, stressful, fear-filled existence we seem to have inherited in these last two centuries. However, I hadn’t planned or dreamt of a life with cancer.

To be honest, I saw myself as more of a heart attack kind of person; cancer just wasn’t on my radar. So when I was diagnosed with aggressive prostate cancer on my birthday December 2011, I thought fuck, this is really unfair, this wasn’t in the plan.

Its strange the thoughts I had initially; ‘why me, I’ve tried to be a good person, I’ve helped people all my adult life?’ As though only bad people got cancer. Then I found myself observing my reactions as though I was looking on as an impartial observer would. I knew from this vantage point that I couldn’t, mustn’t let the voice of irrational self-pity take over. I knew that I had to take charge of this situation. I knew absolutely that life had dealt me these cards for a reason and I had to play out my hand as best I could. There was no room for the ‘poor me’s’. I knew also that everything I had learned as a Nurse and as a Counsellor and all the strength I had gained over my then 55 years of life were for this moment; to deal with this cancer.

So, when Rebekah and I left the death Doctor’s office I said to her that I wasn’t going to be a victim to this and I wasn’t going to let the medical profession take over and run the show; that somehow I had to figure out how to fight this thing. God bless her, Rebekah said that she was my wife and that she would support me 100% in whatever we had to do and you know, she hasn’t failed me for one moment in her commitment to do that since the life-changing day in 2011.

Since we changed our lives around, sold up, moved into Gladys, put Kirt and Candace out of house and home, became vegetarians and generally started to become knowledgeable in healthy living and holistic cancer treatments, well, I have felt better than I have felt in many years; until the beginning of this year that is.

I don’t know quite what has happened but my prostate has closed in around my urethra. In short, I can’t pee other than a few squirts so my bladder has began to fill up and stretch to ominous levels.
The prostate gland is like a walnut that surrounds the pee tube and it often get larger in older men and causes constriction and sometimes urinary retention. It also enlarges due to prostate cancer. This enlargement can result in emergency admission to hospital to clear a way through the restricted urethra.

Lucky for me perhaps, I had been self catheterising once a week to keep a previously operated on urethral stricture open so I have had to kind of nurse my way through this situation by self catheterising about 3 or 4 times a day whilst waiting for an appointment with our intrepid NHS. Finally, the appointment arrived last Monday at the UCH but as Rebekah has previously blogged, there is a 5 or 6 months waiting list to get this fixed.

Right now my spirits are ok but I confess I took a down turn for a day or two after the UCH experience. I feel in pain in my back and side. The constriction is messing around with the normal smooth flowing of the organs down in the area of the prostates like the kidneys, bladder, and bowels. I am quite tired as my sleep is affected. It looks likely that I will have to take Hormones to reduce the size of the prostate cancer and I have found that Barts can do an operation to put a metal stent into my Urethra to open things up again. I can see a way forward but some  treatments that I didn’t want to do I may have to in order to make some progress.

Well, without wishing to sound like some sort of Pollyanna, there are surely worse things happening to people in the world than the problems I have and of course I must remember that the road is never smooth and straight. It seems to be a fact of living, like some novel or film script, the hero never gets the desired outcome without encountering several setbacks and disappointments. There are always hurdles to jump or pull yourself over, compromises to make and more than a few minefields to negotiate. Oh and we haven’t had the car chase yet.

I draw a lot of strength from my Grandfather. I always thought that my Grandfather must have been a really brave man. He fought in the early part of the Second World War in the 51st Highland Division. My Grandfather was my hero

The soldiers of the 51st were ordered to hold the retreat at Dunkirk to allow all the other soldiers to escape on the little boats. They had to fight back the Germans while the evacuation was completed. When all the little boats had left Dunkirk the Highlanders and others were left behind. Their forces decimated, run out of food and ammunition and cornered by Rommel’s Tanks the soldiers surrendered. It was then that their ordeal really began. They were marched without food and with extreme brutal treatment from the Germans, through France, Belgium and Germany to terrible POW camps and forced labour. Somehow my Grandfather made it through all that and survived the war. I have often wondered what kind of man I would have been under those circumstances; would I have fought to survive or given up and died?

Now my situations is not the same, far from it, but I have called on my Grandfather’s courage and his ability to keep going, to never give up, because whatever is going on now in ones life, we never know when success is just around the corner.

It’s been nice talking to you all and Rebekah will be back on the next blog to keep you up to speed on our adventures.
May the force be with you.
Love and light


Nurse Specialist My Arse

12 03 2013

Well, a bit of a start to the week for us two!!! Alistair took a bit of a turn for the worst on Sunday morning suffering acute abdominal pain, cause of which is unknown, but as I was mentioning to someone yesterday, when you have a curve ball diagnosis any little twinge plays a little bit of havoc with your mind if you let it. I have nursed him through with all sorts of things all of which at the very least will do no harm and hopefully will at least bring a little relief.

The pain had eased a little by yesterday morning which is good as we had our first appointment with our Homeopathic consultant in London which we have been waiting for since October. And what a refreshingly wonderful NHS experience it was at the London Hospital of Integrative Medicine,not like being at an NHS place at all really. Calm, friendly, green plants everywhere and an excellent consultation with our Homeopathic Doctor who encouraged us, listened really carefully, took a full history, respected our beliefs and prescribed some Mistletoe (purported to have good results) and also some Conium Maculatum (that which killed Socrates no less, good for urinary problems and tumours, although it does also sound like a Harry Potter spell)! The whole experience was very positive and left us feeling totally taken care of.

Ah, the juxtaposition with todays sad and woefully sorry state of affairs at the UCHL! After a 10 week wait for todays urgent referral to see the Urology Consultant, we end up with the fucking monkey not the organ grinder! Please, don’t get me wrong I have no problem seeing a nurse specialist rather than a consultant if , they are proficient at basic nursing skills, have a kind and compassionate bedside manner and actually listen to you before passing judgement. His opening statement was “why are you here” (a full set of notes laid out in front of him), “I have cancer as you know” was Alistair’s reply and then ” I have an acute abdominal pain since sunday, can’t pee, haven’t had a shit since sunday and obviously need to find out whats going on and what to do”. At that point the guy ignored the acute pain part, didn’t even palpate his abdomen  and launched into how he had read Alistair’s notes and therefor knew what a challenge he was going to be and spent 20 minutes justifying his own belief in Radiation, Chemotherapy and Hormone therapy.

The good news, he is suggesting a partial resection of the prosate (fine by Alistair) that will help him to be able to pee again and its OK because he will only have to wait 6 MONTHS for an appointment!!!!!!! Oh and a month waiting list for an ultrasound, bone scan and a flexible cystoscopy to see whats blocking the urethra.

And now the ‘piece de resistance’, “What can you do or prescribe for the acute pain that my husband has been in since sunday’ I asked……”`What Pain” was his reply and then… go to your GP!!!! Do you know, I actually packed an overnight bag for Alistair in case they decided it might be best to keep him in for a few days seeing as he was in so much pain, silly me, I must have been watching too much Call the Midwife!

Suffice to say we felt pretty low on our journey home.

So where does that leave us, still very focused on our alternative care for Alistair’s needs, I am on a mission to get hold of the cannabis oil (feel free to private message me if you can help), we have our homeopath and we have our own GP who actually has become somewhat of an ally for Alistair. I think the message that we need people to hear is that we are all entitled to our own views and opinions and we are still also entitled to be treated civilly and fairly when we are in the NHS system. It has to be OK for people to say no to stuff, it has to be OK for us to deal with this in a way that honours our own beliefs. Its a tough journey sometimes but if I have learnt anything at all today it is that it is so important to really listen to what people are saying, I mean really listen and really hear. It makes such a difference when you are truly heard.

Testing my Mettle!

1 03 2013
Gladys got us to Brighton

Gladys resting at our giant pitch in Brighton after getting us safely from Essex.

Well theres been a bit of a gap since my last ramblings and for good reason, February has been CRAZY!

Our break in France was wonderful (thank you again Very Kind Man) and looking back I can see it was a week of calm before a very stormy few weeks.

Alistair had his test results back and they were all good except for that bloody little prostate that is playing up. Its playing havoc with his sleep at night and isn’t  much better behaved during the daytime  either. We have up’d the anti on the raw food and nutritional front and we also tracked down some herbs that are having amazing effects on killing prostate cancer cells (thank you to an old friend of Alistair’s who passed on this valuable info). We took a ride out to Brixton (we took Jake as our wing man) and procured said herbs and have been boiling up a tea brewing storm in Gladys’ kitchen for the last few weeks in an attempt to reduce that pesky swollen gland!

We have at long last received our urgent appointment to see the Urologist and also (like buses these appointments) an appointment the day before to see a homeopathic consultant at the London Hospital for Integrative Medicine. So 2 appointments in 2 days in mid March to hopefully find some relief for Alistair. Of course our fear is that surgery may be the only option offered but as ever we remain hopeful and keep our minds fully open to all possibilities. Alistair and I have made it our top priority to nurse him through every single day to avoid a bladder or kidney infection and the need for antibiotics, and so far so good, thanks to copious amounts of colloidal silver, organic pressed cranberry and plenty of home made herbal infusions (said herbs and also Jamaican cinnamon leaf). He is very uncomfortable though so with slight angst at being in the mix with medical model minded folk it is a necessity at the moment that cannot be avoided, a man has to pee!

And thats the lovely thing about the next part of CRAZY February, being around such like minded people at the College of Natural Medicine where I am studying. It is an amazing thing to be surrounded by literally hundreds of people that all share the same passion, the same heartfelt beliefs in nature, herbs and foods to heal our selves and our souls. However, this knowledge I now realise comes at a price even higher than the monthly direct debits! I had to sit my end of semester 1 first year exam last weekend so since the beginning of February I have been involved in a fairly heavy revision timetable in order to pass. This meant up at sparrow fart  (5am) everyday for 3 weeks to slog it out with all the various systems of the body for 3 hours before Alistair’s juice/ gruel/tea and supplement routine and before work!  And then 2 weeks into February poor old Dad took a turn for the worst and needed to go into hospital. So that then meant study, Alistair, work, take mum to see dad (my lovely sister Kate and Candace and I managed this with amazing teamwork) and then home to chill with Alistair and zzzzzz(oops nodded of there, so tired)!

So it will be no surprise to hear that once the exam was over and we packed Gladys up and headed for the south coast for a few days away I came down with a cold, the first since some time in 2011! Stress and health eh, what a marvellous  link.

Alistair relaxing with new levis and new cap

Alistair relaxing with new Levis and new cap

I think though, all things being equal, I managed my stress levels pretty well and recently I have begun to really appreciate my ancestry.I thank the Universe and the O’Neale genes for the strength that I have, and I see that strength in my dear old Mum and in Pippin too. As mine and Alistair’s curve ball journey continues to unfold I am finding myself more and more, and I think  the same is probably true for Alistair too.

Blending in to Brighton

Blending in to Brighton

So here we are, we have had a few days break down in Brighton which embraced us and our alternative ideas fabulously, we kind of blended in rather than stuck out like  sore thumbs! We found a brilliant vegetarian cafe in the North Laines called Idyea, give it a try if you are down there its really good food and very eco friendly. Gladys has been amazing, a real home form home (hee hee) and we are ready now to face all that March has to offer, keeping our values and beliefs as intact as we possibly can.

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