confused and pi**ed off

A Tribute To Carers and Ex-Carers xxx

2011-07-22T18:58:06Z

Hi Guys,

Had some good news a couple of weeks ago and on a real high, maybe the reason I am now even more aware than usual of the pain so many are feeling on here, both the physical type for the patients, some of the treatments although having real long term benefits can be so traumatic.

Then there is the Emotional strain and pain, suffered by all at some stage, the shock of diagnosis, the waiting for scans the the never ending wait for results and decisions on the best course or action or even the worse, the dreaded news, its inoperable, there is no further treatment available worth trying. Not cruel just a fact of life or should that read death ?

At all stages there is support, the Consultants, the Onc, Specialist Nurses, the palliative care and Mac Nurses, the hospice and the care homes, not perfect by any means and still maybe a postcode lottery to some extent, but it is improving steadily.

While all of these are necessary sources of Support, we have not mentioned the very best one for Support, information and knowledge based experience that is the Mac Family. The Club of Reluctant Members. The secret, I believe, is the blend of experience, Patients, Ex-Patients, Carers, Ex-Carers, friends and family members. The have an unrivalled knowledge, they have been there, some of them are there now and information and support is based on personal experience. I hate to single any one group out, as all play an important and integrated role, but I will !!

They are the group I believe who have suffer the most, bar none ! They are the forgotten victims that struggle for support or in some cases even recognition. They Save the country Millions carrying out an unpaid and even acknowledged role. They are offered less support, financial and emotional than others. They do what they do out of Love and Commitment not for reward or thanks, just as well because they are soon forgotten and receive even little thanks in so many cases. Yes you guessed I am on my Hobby Horse again, this group is the ex-carers.

They have walked the same road as the patient but are now in so many cases left to cope alone, so little thanks or recognition, fighting for so little in terms of benefit. The only reward they get is the knowledge they did all they could when it was needed. They did not do it for reward, they did it from love and duty. So the next stage, leave the site and dwell alone in their sorrow, well some do and maybe all need to take a breath to reflect. They have proved their loving and caring nature and so many return to the Mac Family and use their knowledge and experience to help anyone, patient or carer in pain or struggling alone in the dark.

Right I do not write poetry - Full stop !! but did feel a need to write some of my inner thoughts down and not quite sure how this happened but here they are.

Facing Grief, A Tribute To Carers and Ex-carers

Some say that grief is a part of death, a way to show we care
Others say its a part of life, a lasting love we want to share

The one thing I know that's so true, we all react in our own way
For some a lifetime, some a year, some a month and for some a day

For most the grief reflects a deeper love, a debt they have to repay
Some are Lucky, some less so, they want to Say I love You, but delay

They let petty rows rule their lives, the bitterness that corrodes their needs
Too late it dawns on them, Wish I had said I love you, regret my selfish deeds

The one they Loved, that sacrificed so many years, that gave up so very much
Is gone, the sudden certain knowledge, they are beyond their concious touch

For others, the joy that becomes so strong, they were there, they loved, they did it all
They gave them hugs, they changed the bed, they stayed up all night, ready for any call

The pain the Carers had, the ones they suffer now, was the small price they thought was right to pay
But they sleep easier, a debt of love that no one asked them to repay, just a need we had they say

They faced that lonely walk, the dark tunnel, the lonely place, needing both space and time
Then the slightest glimmer that marks the tunnels end, moving forward, still an uphill climb

They suffer Long after the loved one found rest, then all carers know what I am talking about
They blog at times, helping others hurting, offer their Care and Love, but never share a doubt

So where am I going, just see so many hurting every day, do I even Know what I want to say
Think its clearer now !! This is the Mac Family, here for all !! Ex-Carers need You all to Stay !!

We are new, told its Cancer, feels like I may die soon you know ? You explain how we can cope
You have seen others in our place, not false promises, explain treatments, side effects and hope

You are the Life Blood of the site, you have been where we may be, we are scared, all new to us
Not a seconds delay, You offer help, advice, experience and love, you hold us close without fuss

For some our existance can be seen as just a temporary stop, the pain to be endured, before moving on
Believing they will be reunited, Partners, Siblings, Parents, Children, they are now waiting, never gone

So had my say - Thank You each and Everyone

Love and Hugs

John xx

I am in Great Place !!

2011-07-08T21:13:11Z

Always try to be PC But this is pushing it

Well sorry guys but that means I may go on for a while, not posted for a while so will use this as an update to my blog. Very Brief update, locally advanced prostate Cancer, on hormone treatment and stable - you need more details read my Bio !

Well life can be a bit sneaky - posted my last update October 2010 - saying how well the treatment was working, about the same time had a blood test to monitor progress but due to Xmas hols and consultant being away did not get these results until Jan 2011, bit shocked, results showed cancer was spreading and active again, the hormone treatment was loosing its effectiveness. Results indicated a doubling of activity every 6 months.

Put on a brave front and even convinced myself I had come to terms with it - had 18 months before it became critical. Took about 2 days for the penny to drop and then I had a real wobble !

The results were 3 months out of date, so demanded - yes demanded, an emergency appointment with my GP for Blood tests - PSA and Testosterone - both indicators of activity - ( treatment meant I had been chemically castrated - so testosterone should of been very low ) Sods Law - GP on holidays - saw Locum, some resistance but agreed to blood tests and even mark as urgent - this was Tuesday got my results on Thursday - so maybe the rant worked - or just a concerned locum either way - good result - PSA raised - but no sign of a doubling , testosterone on the higher edge of the control level - so managed to calm down - lol.

The meeting with my Urology Consultant in January lead to an appointment with an Onc from Christies at Oldham in March and after discussions agreed that the next phase of treatment was RT to the prostate, had not been removed during surgery as cancer had already spread to lymph system, so extra surgery not justified as effective, I was aware that this was possible prior to surgery. It was not thought this was the most likely source of rogue cells. Had 16 sessions, one each week day for 3 weeks- lol weekends off !! - OK painless - but some side effects by second week, bladder and bowel function, some sensitivity to back side and ended up smoother in my pubic are than any waxing - lol !! Side effects for about 2 weeks after treatment finished but improved every day. Never what could be considered painful, but irritating. Maybe the worst side effect was fatigue also for some reason lack of concentration. Some would expect that as they think guys brains are in groin area so no ribald comments please !!

8 days after treatment finished, about 28 days after the first one, had a blood test, told not to bother as results would not show any effects - but PSA had halved !!

Today went for 3 month update and Blood test results - fantastic, more that halved again now down to 0.9 which is nothing !! Told to expect a further lowering and maybe reduce the hormone treatment soon - next update will be with Onc at Christies and review the hormone treatment, suggestion is 3 months on 3 months off to let my body recover - but in such a good place this weekend and want to share !!

During this time time I have had unwavering support from Mac Mates, there with advice, there with suggestions, there with a gentle hug - there with a kick up the backside - They just knew which was required and when - could not of completed this journey alone - Thanks to all You Guys xx

Love and Hugs to all - When life is good its good !! xxx

J xx

Not Sure Maybe I am Just Selfish ?

2011-06-14T20:19:09Z

Well those that know me will know it does not take a lot to get me confused, maybe a glass of wine and a thought that I cannot get out of my head, the thought is usually in the the small hours of the morning when I am trying to get back to sleep. The wine is usually a good bit earlier than that !

OK first point I do not think for one second that any one child's life is worth more or less than another based purely on lifes lottery as to where they were born.

Yesterday it was announced that we would donate £814,000,000 toward providing vaccines in 3rd world countries with the intention of reducing the current death rates, the rate quoted was 3 children dying every minute and this is in the 21st century !! No one should denie these children the chance of life on moral or humanitarian grounds, we cannot stand by and do nothing.

Then the other thoughts creep in. Every time we turn on the TV or open a news paper we learn of the next world disaster, another 3 children dying every minute due to the lack of clean drinking water, 10 million people at risk of starvation because of drought and famine.

This is coupled with major disasters that seem to be happening with ever greater regularity, earthquakes, floods, hurricanes and land slips. I am not here trying to beat the drum about global warming but it does look like something is upsetting the balance of earths eco-system. Each disaster is accompanied by requests for funds to help with its relief and each is a deserving cause.

The figure of £814,000,000 was a contribution to a world wide target of 2.34 billion - by my reckoning Britain pledged 1/3 of the total. OK maybe controversial but we are no longer a world leading power and it seems out of proportion in the current economic climate. We are almost bankrupt as a country but we seem to be able to find funds for munitions to fight wars and make charitable donations to other nations while ignoring the plight of thousands living in poverty in this country

The other side of the coin, open any newspaper or listen to any local TV news program and you hear of the latest person being denied life saving or life extending drugs because of the cost.

The child who has to raise hundreds of thousands themselves to travel abroad because we do not do the procedure here, nor do we provide them with the funding

The care homes group that have to shed hundreds of jobs, we then get assurances that this will not impact on patient services, still trying to work that one out to be honest !!!

Ok Got to declare an interest on this one, hope no one minds the language but really peed off with the number of posts I read about cancer patients being denied benefit or have to prove that they deserve benefit because they are not fit to work - seems the work shy know how to manipulate the system while the genuine peopel who want nothing more than to return to work are called for examination to get the absolute basic benefits

Maybe some of you will consider me as being callous but unable to find a balancing point between cost and benefit. We have pledged to spend £814,000,000 on vaccine, if we save the lives of 3 children a minute that equates to 1,580,000 lives a year if the project lasts for 3 years that is 4,750,000 children. I am probably being naive but does this not further increase the demand for clean drinking water and further diminish the available food supplies. I know I am being simplistic with the maths.

Do we move on and try to lead the way in solving the water, the drought and the famine problems of the world, do we turn our backs and ignore the pain and suffering, A child born in a remote village on the African Continent is no less worthy of life than a child born in Britain, who is fighting for funding to fight cancer or other life shortening or crippling disease but how do we find the balance.

Lets not loose sight of maybe the most fundamental point that tends to be ignored. No elected Government have any money or funds of their own, what they have is access to our taxes and levies, raised from individuals and companies, they administer and allocate these in our names. We elect them and trust them to make the best possible decisions and commit us to certain paths of action. But there are times when their judgement is more than suspect, it is fundamentally wrong !

This will sound blunt but charity really should start at home, the donations we make abroad should be made from funds that are surplice to the basic care, health and welfare of the citizens who have contributed them. Not suggesting we should all expect to live in luxury or have unlimited access to welfare payments.

What we should not need to hear on the evening news is that some pensioners are now having to make a conscious choice to eat or to have heating, as they can't afford both. At the same time that we hear that Bankers are paying themselves multi million pound bonus's. We need to get a sense of proportion and reality in this country before we try to save the world.

OK Rant over and not suggesting I have any answers

Love and hugs To all XXX

Britain's Got Cancer - Apologies to Simon

2011-06-05T18:07:21Z

Hi Guys,

Well back in one of my reflective moods today, never a good sign when I start thinking, problem is so little ammunition to use it gets scarry !!

OK not sleeping too well at the moment, few problems on my mind, nothing serious and nothing compared to the problems some of the Mac Family have to contend with. Also struggling, the last couple of week, with night sweats, bet that that paints a pleasant picture huh ?

Wakening about 4 am, drinking a litre of water and cooling down. Finally get back to sleep, so 30 mins later up to go to the loo to get rid of the water, bit like perpetual motion maybe !!

Anyway back to the theme ? 4 am this morning, had my water, kicked the dog off the bed - who needs a fur covered hot water bottle this time of the year anyway !! After 10 mins of quiet wining, moaning and yelping I gave in to the wife and lifted the dog back on to the foot of the bed, know when I am out voted.

So got to thinking, Britains Got Talent final last night and although I did not pick the winner the he was a worthy winner with a fantastic voice - got 100,000 votes so a very popular choice.

Got a question for you all though, how many of you knew or remember the name of the song he sang or more important listened to the words, don't mean heard the song, but listened to the words.

I don't have a strong religious faith, for various reasons that are not important enough for me to go into in any depth, suppose we all have our own beliefs, just think so much blood has been shed fighting about my God is Better than your God.

Sorry strayed off subject again, and this time of night cannot even blame wine, not opened the bottle yet

Right I listened to the words, despite the lack of religious beliefe I was really moved, feel this song could almost be the Mac Anthem, for those with religious views, and have lost a Partner, Relative or Friend to Cancer.

One last point maybe - lets stop being coy and calling it the 'Big C' its called Cancer and the days of feeling shame for having it are long gone. I have Cancer and I will fight it but never denie it, if non-sufferers shy away its their problem not mine !!

By sufferers I include all Patients, Ex-Patients, Carers, Ex- Carers Friends, Relatives and supporters.

So here goes - read absorb and enjoy.

To Where You Are lyrics
Songwriters: Thompson, Linda; Marx, Richard;

Who can say for certain?
Maybe you're still here
I feel you all around me
Your memories so clear

Deep in the stillness
I can hear you speak
You're still an inspiration
Can it be

That you are my forever love
And you are watching over me from up above?

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile

If only for awhile
To know you're there
A breath away's not far
To where you are

Are you gently sleeping
Here inside my dream?
And isn't faith believing?
All power can't be seen

As my heart holds you
Just one beat away
I cherish all you gave me
Everyday

'Cause you are my forever love
Watching me from up above
And I believe that angels breathe
And that love will live on and never leave

I know you're there
A breath away's not far
To where you are

Love and Hugs to All

J xx

The End Of The World or Just Hell On Earth !!

2011-05-22T18:59:10Z

OK !! Fed up with all you false prophets of doom, spreading uncertainty and concern among us, the true believers !! Some of us have experienced Hell more than once and prayed for the end of the world !!

The correct date for the end of the civilised world and the start of hell on earth is 29th August 2011, coincides with the Bank Holiday, anyone heading into Devon will experience it, 24 mile traffic jams. As soon as you pass the last Services the kids will throw up, Granny will first suffer from wind, followed by incontinence and Mum mentions she has run out of nappies !!

This is around the time the thermostat and the fan packs up and the internal temp reaches 120 F - Granny does not smell good, and the kids not much better. Not sure about the dog having a weak stomach - managed to throw its dinner onto the windscreen, a good 10 ft !!

Its also the time you remember your RAC subscription ran out yesterday, and you thought the petrol would last until you got off the motorway. You have a flashing petrol indicator, maybe enough for 30 Min's, but You forgot the 4 hour jams !

Could always be worse, the engine could overheat, opps !! too late. Turn the engine off and wait 30 Min's for the car in front to move 3ft so you can get on the hard shoulder. Only been stopped 5 Min's when all the Traffic sets of at 80 MPH and the selfish beggers will not let you back in !! - Bloody Northern Caravan Towing Grockles !!

Finally pick on a little old lady in a Morris Oxford with a split screen and force you way back into the flow. In my days little old ladies did not swear like that or even know those hand signals !! - thats when the traffic slows again !!

Ok Long story short - 6 hours later get to the campsite, really experienced, used to putting up the tent in the rain, mind you the wind is a problem, glad of the lightning cause the torch has gone flat ! After an hour give up , you really do need the tent poles !! - so sleep in the car.

After an hour you actually start to feel relaxed, think its the gentle rocking motion - very soothing. It now you realise the Blurb in the pamphlet about Electricity & Running Water is Devonian for Lightning Storms and liable to Flash Flooding !! Yes some of us have experienced hell on earth already !!

Some of us would welcome the end of the world, just hope its not on a Bank Holiday in Devon !!

Hugs To all - life's too short to worry !!

John xx

The Chat Room - ENOUGH !!

2011-05-12T19:14:56Z

Hi Guys,

Don't really want to post more and more blogs on such a sensitive subject, the more we talk it out the more we are going to upset each other !

Want to ask you all a favour - can we draw a line under this subject now please, reading the various post we are all in agreement - The purpose of the Chat Room echo's the purpose of the site - to support anyone suffering from the affects of Cancer.

Lets not get too hung up on who hurts the most, does it really matter ? If someone is hurting they need our support - not too bothered if it because they are scared, the effects of treatment or because they have just been told that no further treatment is available.

Pain is pain and shows itself in different ways - mental or physical - its still pain. Not looking for sympathy honest - but mine is in operable, still have some time but do understand the end game. Being honest reconciled things and in a great place. I have suffered far more physical pain with tooth ache !! - so Let not compare our hurts please, its meaningless we all need support which is just another demonstration of family love.

The beauty of the site is we are the Mac Family, we do welcome anyone who has to join - but we really are the club of reluctant members. Does not matter a jot if you are a Patient, Ex-patient, Carer, Ex-Carer, friend or family member. All we should ever expect is that you allow us to welcome you when you join, support you when you hurt, laugh with you when its appropriate, and shed some tears with you when thats appropriate too.

OK does work both ways on here. In time it will be your turn to support others, new guys will think I have been drinking even more than usual ! That they will never get to to that place - but so many do - how do you think we felt when we joined, just as lost frightened and hurting.

So can we change the subject please - lets do what we do best - Support anyone Suffering with cancer, irrespective of discussing the reason we are here - We are the Mac Family and we are Fantastic at supporting - the best site on the net !!

Love and Hugs to Everyone !!

J xx

Life is Good !!

2011-05-10T20:28:30Z

Ok Gobby is back !!

Been a week or 2 since I posted anything - but in a good place these days. Quick update ok - Locally advanced prostate Cancer, on hormone treatment since Oct 2008 but started to fail - tumours on the march again - to be honest - had a big wobble, wanted to hide alone in my dark, cold, safe cave - but a couple of very Special Friend lead me back into the sun, warmth and held my hand - thanks xx

So I was offered RT to try to hit the source, took a couple of days out to consider side effects versus the benefits - always been a bit of a gambler - well suppose life is a lottery - just never been a big winner. Not complaining honest - just a fact.

So had 16 sessions, painless but side effect caused a bit of discomfort - tea time so no details but involves bladder and bowels ok - but can be controlled by diet and medication and never in any real pain.

OK indication that hormone treatment was failing was a blood test with PSA indicator rising by a factor of 2 every 6 months - last result 4.35 - figure is not significant - the rise is the concern - up from 2.7 just shows some unwanted activity. So started treatment on March 23rd, 16 sessions mon - fri and finished April 13 th Blood test taken 20th April for Urologist appointment on 6th May - bank holidays cock everything up.

Been told that the RT would not affect the accuracy of the PSA result - but too early see any effect. What a great day - told the PSA was down to 2 !!

OK being honest- I hoped the treatment may of held the figure around the 4 - 5 or at least slowed the doubling, dreaded hearing 6 or higher but wow !! 7 days after treatment finished or 28 days after it started fells so good. Assured by Urologist effects are results of RT - no other factor to account for it.

Looks like they hit the main source, ok I accept - there maybe a few more sites to hit - more hormones maybe - but on a high for while - next blood test is for the 1st july so fingers crossed ! Know they can only slow it down, but everyday is a bonus - still have so much to do !

To all My Mac Mates - thanks for being there for me and the love and encouragement you have sent. it really does help when you are a bit down or trying to hide in that cave.

Love and hugs Guys

J xx

Happy Easter To The Mac Family

2011-04-23T18:40:18Z

Well Guys - Its Easter Tomorrow, Not sure what it means to you, maybe different for each of us.

To the Kids a time to go hypo on choc, and maybe some Mums too when the kids backs are turned, make the most of it, the little err angels will learn to count so soon !!

The Adults ? Well I lost my faith many Years ago, maybe a bit sad but not happy to follow any path that wants to kill to prove 'My God is Better than Yours' type argument. Religion has probably resulted in more deaths over the centuries than anything else.

For the Strong Christians among you - May tomorrow bring you peace and a renewal of faith with the resurrection of Jesus Christ. For those of other faiths, or no faith at all, may this year bring peace and good health to You and Yours.

Not sure how some of You feel on here but I do think back to my Catholic upbringing and have a fair knowledge of the bible and some of the parables, stories that have purpose even if not based on fact to offer hope or to inspire a positive attitude.

Hope no one will be too offended but I always consider the bible to be a parable almost, a collection of thoughts and almost folk law passed down through the generations, all with the purpose of improving behaviour and inspiring a Love of God and maybe even an explanation as to God's existence. The bible has been through so many transitions, translations and interpretations all intended to clarify certain points or aspects but probably bear little resemblance to the original words.

Sorry going off at a tangent here and know I am in danger of offending so many people - maybe the point I started off wanting to make ? In a way I see Cancer as almost being a resurrection, sorry if that sounds like blasphemy to some but maybe give me a chance to sort my thoughts out ?

Maybe a bit like Saul being stuck blind on the road to Damascus, a bolt of lightning strikes us down, You never asked for it - let alone deserved it but sudden told You have Cancer. Guaranteed 99% of us react the same way or at least a selection of thoughts, perm any 8 from 10, Stunned, Scarred, disbelief, unfairness, why us, Bloody results mixed with someone else's and the worst - we are going to die !!

All of these seem to be typical, the one thing we find hard to do at first is to talk about it - let alone listen or ask for help, we find medics are talking a new foreign language, not sure if its the shock - we either don't hear or if we do, we don't understand and we do not ask for explanations. The word we heard and it drowns out every other word or thought 'CANCER'

We all know it a certain immediate Death sentence. Its not long before we start thinking of others, how will my Wife, Husband, Partner, Children or Parents cope, maybe at this stage we start to look for answers ?

So many of us find ourselves looking for hope, we start to do searches on the net, we Google, Never ever a good thing to do !

Eventually we find sites like this with factual information, technical details and others who prove so much we thought was wrong - There is hope - there is Survival, at a surprising high percentage to the new comers, best of all we find Hope, Support and Love from People who understand, not only do they want to listen - they understand !! Thank You to the Mac Family one and all.

Ok maybe a bit sad, science still has some way to go, we will not all make it - but our chances and time scale are improving all the time. But know what - we are so happy that so many of our friends do !! - every day we read of Friends who have made it, treatment over, remission and NED - How fantastic is that. ?

So maybe a long winded way of making my point - to anyone who has made it and will make it - You have been reborn, do not waste it and live life to the full for some of us who won't please.

Just want to wish a Happy Easter To All Patients, ex-patients, Carers and Ex- carers - wishing you peace and hope for the future.

Love and Hugs To All

J xx

My Locally Advanced Prostate Cancer and RT Journey

2011-04-15T21:37:26Z

Friday Night Update - Yes I am having a glass of wine so maybe close to being back to my Normals self !!

Do not think anyone will be offended, less humour in this Blog - a serious indication of my treatment and the effects and hope if this is read by any one affected by Prostate Cancer, Patient or Carer, considering Radio Therapy might gains some knowledge and maybe an insight, hope this may remove some concerns of the unknown. It does contain some anotomical, or should that be biological info ? Either way know you Guys will understand

Well thats it - RT All done - lets do the serious bit, had 16 consecutive treatments, Monday to Friday each of 4 doses, lost count the first time, thought it was 5 doses, must of been over excited. The treatment itself is painfree - apart from a buzzing noise you would not know its happening. There is no heating or any other sensation, just a slight draft while the boxer shorts are down.

There are side effects and I think in 99% of cases these are mild, they tend to start during the second week, bit early to predict yet but should start to fade 2 - 4 weeks after the treatment ends.

I do get a medical review after 6 weeks, by telephone, this concentrates on the side effects and to see if any have been long lasting effects that may need treatment.

I was furnished with a list of contact numbers and the instructions to contact them at any time for advice about symptoms or any concerns at all. The lasting impression I was left with - Profesionalism, every stage you were addressed by your first name, very personal, not just a patient number. After the first couple of days what seemed a casual greeting 'How are you today' was followed up by an anylsis of the symptoms and did you need any medication or guidence as to how to minimise the effects, a change of diet etc .

Not sure but some of you might like to jump over the next couple paragraphs - deals with effects on the bladder and bowels ! Quick biology lesson about the Prtostate ? the Prostate is part of the male sexual system, it actally produces the seminal fluid, the liquid the sperm is suspended in. it situated between the bladder and the penis and surrounds the uretha - the tube urine passes through. Its situated on the centre line of the body behind the pubic bone.

RT treatment is from the back and affects the bladder and bowel area as well. The effect does have a thining effect on the skin and causes bleeding, around the back passage, this is a very common side effect, still just discomfort with only a little pain - worst aspect about it maybe - it gets worse before it gets better - lol

Bit of a catch 22 situation - need to keep the area clean to avoid infection, but very sensetive to pressure or friction. I ended up using moist baby wipes - even these felt harsh at times ! Knew I was born to better things !! They do recommend switching to a low fibre diet and this is worthwhile folowing.

Other effects - bladder - flow restricted due to prostate compressing uretha, frequency increased and the same effects as cystitus - burning sensation when weeing - but these fade quite quickly. The worst side effect is probably fatigue, but again a nap in the afternoon or early evening helps with this and maybe a couple of early nights each week.

Maybe the hardest bit about the treatment ? Waiting for results. Despite several scans during treatment these are not available for diagnostic purposes, just to confirm the area being treated and as a permanent record

The proposed Consultants reviews agreed pre-treatment were, alternate appointments with Eurologyst and Onc, each 6 months apart but staggered by 3 months. Usually have PSA indicator blood test 2 weeks prior to appointmenst so results are available at review. Been suggest I forget next appointment (May 6th ) and PSA test as too close to treatment ending to show true indication, so next review 15th August with PSA test. The whole reason for the RT was due to a rising PSA so maybe a little on edge by August, last PSA was January - but such is life. No point rushing things with early results, unneccessary worry or false hopes, will give the treatment a chance to reflect true action.

If anyone is considering RT for the Prostate feel free to PM me if you want further information, such as the medication available - hope all facilities are as Good as Christies.

So, sorry to say, Guys I will be back to my normal annoying self soon and causing havok in the chat room soon - got a stack of jokes ready - lol !!

Love and Hugs

J xx

Life, The Universe and Big Mac's !

2011-04-08T18:21:28Z

My Locally Advanced Prostate Cancer and Radio Therapy Journey

Well these Fridays seem to be coming around fast, time for a glass of wine and some more deep thinking !

Well I have been sat here for an hour on my own and pondering, along with all the Nobel Prize winners, some of the mysteries of the Universe, You know the thing - Einstein e = mc squared. How did the Universe come into Existence, what existed before the Universe, Is there a God and if so what is She like ??

Thought I would start with the easy ones though - bit cerebral for me some of those other ones until after the second glass of Vino - could be a new prize for beginners - Maybe the No Ball Prize Winners ?

Ok how about : How does the Snow Plough Driver get to work when its snowing ? Why, if you drop a slice of buttered bread does it always lands butter side down ? If Big Mac's are really 100% beef why do they taste so crap ? Still even this level is a bit challenging to me at times and still searching for solutions !!

OK the real imponderable - Why did I get Cancer ? A bit like the other very techie questions above - because I did, The good news is it was me and not someone I loved - now that would of been bad and even the question would of hurt !

So I have Cancer - not the end of the world - err maybe a need to rethink that phrase in the future ! - but not right now ! Mine is not too aggressive, OK its classed as inoperable - must look that up some time but not sure I really want to google it.

Now Google That is Bloody Scary !! - did one of these on line Dx as to my Condition, fed in the symptoms, current medication and proposed treatment - did not tell me what the problem was but gave me a list of funeral Directors, with an option to print out and a discount if I could book by June !!

Think I might of got confused and been transfered to a holiday site, you know how easy its is to click on those pop-up adverts !! Do remember it said all inclusive and a free bar - so you know me, I was ready to book it there and then !!

Real Answer, again I don't know and neither do the Docs. That is the real worrying aspect !! There are various treatments available, Surgery, Chemo, Hormones and Radio Therapy. New theories and 'New Cancer Drug Break Through' headlines each week in the National Press and even Scientific Papers published. It seems each Specialist has their own theory and treatment regime, with different Specialists use different treatments for the same Ca Type - does seem a bit hit and miss at times.

Maybe I am a cynic - but serious I hope not - my theory is you cannot find a cure until you understand the causes ! OK a very naive statement on the face of it coming up - stop looking for solutions just now, you are only guessing !! Find the cause and work forward from there !

I know thats an over simplification, but no point putting a plaster on a heart attack victim - don't care how fantastic the plaster is or even that a single treatment can cost £2,000. The worst possible outcome, the first heart attack patient recovers and they all end up with 'Super Plasters' on their chest as the treatment of choice !

I realise I am going off on one - not for the first time I know !! The real approach is from both directions, pure clinical research like Geno chain examination, stem cell research together with clinical drug & treatment trials - one day the paths will meet with luck !! - Something we all need at some time.

Think I did almost manage to solve the question of why me, bit like the last line above - its down to luck ! - but does need thinking about - the alternative question is Why not me ?

Talking of Luck - anyone superstitious out there ? - Its Friday and I just had My 13th RT session - lol. All going well, 3 more, then fully baked !!

Most of the side effects seem to be transient, clearing for a few days then returning. Non are too bad and really not much more than a bit of discomfort, still not having to take any meds for them but have switched to low fibre diet which has helped a lot.

Will give a proper update next week when the RT treatment finishes

Love and Hugs to All

J xx

Well Its Now Official - I Am Half Baked !!

2011-04-01T17:49:38Z

My Prostate Cancer and Radio Therapy Journey

Hi Guys,

OK Friday night, glass of wine and time to unwind and update as to where I am. Very brief update, Locally advanced prostate cancer Dx 3 years ago and everything going fantastic, being treated by 3 monthly hormone injections to control. Then last January's PSA blood test result which is an indicator of cancer activity, showed current treatment starting to fail, at an accelerating rate, so time to look at other options. Up till then my consultant has been my Urology Surgeon, he now arranged for me to see Onc at Christies to consider the alternative treatments.

So following the Onc appointment and looking at alternatives, err not too many as chemo is not effective for mine, because it had already spread to the lymph system. I was offered an unusual solution at this stage - Radio Therapy to the Prostate. Because the Cancer had already spread when I had my original op, October 2008, it was suggested there was no advantage in the extra surgical trauma of removing the prostate. The thinking now is that the Prostate could be the source of the rogue cells. The intention is to have 16 Sessions of radio Therapy, by the time you read this I have had 8, so 50% of the journey done !

The first stage of the treatment was to have a 'Planning Scan' bit like a detailed CT scan so that the RT Beam intensity and positioning could be calculated - looks like I will get 5 shots each session, each from a different angle.

Had My Planning scan on Monday 14th March as I said - not too traumatic but a little embarrassing ! They did all the usual checks, date of birth and full address just to make sure the records matched me and that was mentally alert I think !!

Told me my treatment was due to start on 23rd, so great news - no long period waiting for a letter to hear. They asked my preference for appointments and I picked early, all except for the first couple, around 9.30 - 10 am. All 16 now booked but I have the option to ask for a change if I need to - so quite flexible. So if fatigue does become a problem I can go back to bed and still be awake from lunch time with luck. Got my car park password too ! (free car park !)

Taken through to the waiting area for the scan - and was seen at 1.30 prompt. 3 radiographers, struck me none were over 20, but that could be due to my age - the uniform was a tunic up to the neck and they all wore matching uniform trousers, bit like Star Trek, but without the pointy ears, they were all very pleasant and put me at ease.

They spent about 10 Min's explaining the scans, the marking up with pens and the tattoo - all was as expected. Asked me to remove any coins or metal from my trouser pockets, remove my shoes and jacket and to lie on the table of the scanner.

Now comes the awkward bit - lol - they positioned me on my back and lined up various led or laser lights and adjusted my position, then asked me to open my trousers and lower them and my boxer shorts to the level of my buttocks. Being the shy modest person I am, I was careful not to expose anything other than a little pubic hair. I was then asked to raise my bottom and without notice, they dropped my trousers and shorts at least another 12 inches !!! They then covered my err exposed area with a paper towel to spare my blushes - bit blood late by then - lol. Marked up with the skin pens

Anyway two brief scans - a few Min's each and maybe 5 Min's apart and then the tattoo, literally just 3 pin pricks - bit like a join the dot puzzle I was told the pen marks would wash off and not to worry if I could not see the 3 dots - they would see it with their equipment - then told I could get dressed !!

Went from there to meet my Macmillan Treatment Review Radiographer. Her role was to take me through the possible and probable side effects again. Did say for the more common ones, Fatigue, change to bowel activity, frequency of weeing and possible painful wee symptoms that they could supply medication and advise during treatment.

I am also due a medical review each week during treatment to asses any symptoms and a follow up after 6 weeks then every 6 months. Main thing she wanted today was for me to sign the consent forms - which I did

So We move on first 2 treatments - all went well, even overcoming my natural shyness !! - session 3 - I am now a professional !!! - on command drop the boxers !! - bit over confident now and they actually pulled them back up about 6 inches - oops Not sure about meat and 2 veg - maybe button mushroom and 2 frozen peas !! You can tell they are professional - no one laughed !! Anyway break for the weekend. For some reason knackered by midnight Sunday, slept from Midnight till 7.30 am. Some Muscle ache from the legs when navigating the stairs - must be all the exercise I am having - then remember I had not had any !

Monday, Session 4, easy this Radio Therapy lark, got home about 11am had a bit of breakfast and off to bed by 12pm for half an hour - woke up 1 1/2 hours later - needed the loo - err urgent ! Back to bed with a coffee for a while, watch some mind numbing daytime tv - life is tough !!

Never been to the USA - But Yellow Stone Nation Park has a Geyser - a natural venting of water called 'Old Faithful' - well I know how it feels - every 30 Min's off to the loo for a wee ! So if you want a garden water feature I am available ! You must of seen that famous statue of the little boy peeing ? - well I can do a mean impersonation !! Thinking of painting my body bronze and renting myself out if the weather improves a bit !!

So maybe the side effects are kicking in - just a bit of discomfort so not bad and will tackle at medical review on Wednesday - lol

Seem a bit odd - might need a second opinion - been told I am normal - I wish to dispute that !! - OK serious for a minute - bit of fatigue, so get some more rest, peeing a lot, err drink a bit less, bit of cystitus - yes to be expected, so quick review. OK doing fine, symptoms are mild and I already rattle when I walk so no need for extra meds.

Wednesday Night started to see some blood with the motions, which are loose now. Was not sure if this was a one off but similar on Thursday so mentioned it after Fridays Session. Again, told normal reaction to RT and to be expected. The main suggestion was that it was time for me to switch to low fibre diet to improve the bowel action. If this did not reduce the problem then they could provide medication to help on Monday, but better to try to let the body solve it first.

First 3 Sessions were followed by a scan to ensure the right area was being treated and it was being effective, now reduced to 1 scan a week on Friday's. Each session only takes about 10 - 15 minutes including being positioned and the scan as well.

So, overall the hardest part has been anticipating the treatments, have some discomfort - but no worse than during the 6 years prior to treatment - and halfway there - the really, really good news ?? Its OK to Drink Friday and Saturday Nights - so Life is looking good again !!

Will update when finished but do not expect to see full benefits for up to 12 months - but hope maybe 3 or 6 month check indicates some signs of improvements. Good Luck to Everyone Else on Their Journey.

Love and Hugs to All

J xx

No-It Only Happens To Other Mums - Surely Not Me?

2011-03-31T20:59:09Z

ONE DAY WE WILL BEAT CANCER !!

Each year Scientific Knowledge and Screening Techniques Improve
Genetic Testing With Preventative Medication and Surgery Advances
But Alone This Will Never Be Enough ! Cancer Will Not Be Beaten
Until We become Self-Aware, Self Examine And Take The Tests.
Tests can Only Show up Abnormalities If We Take Them !!!
=======================================================

Life can be so confusing, some days boring, others manic,
Then the world Changes, found the lump, but no need to panic.
Could it be my cycle, the body often changes so !
I meant to go last year, when I first found it, though.

Bit late now to ring the doc, 6 days waiting to be seen,
Should of followed up the letter - about that screen.
Its getting bigger, still really just want to ignore,
Not a coward, but don't really want to know much more !

Ok Bite the bullet, time to get it checked out,
Told my hubby how long its been, asked him not to shout.
Seen the Doc, not much said, just refereed me for a quick start,
The scary bit, the waiting now, baited breath, beating heart.

Well got the letter, 2 weeks today, I really should feel good,
If you could predict the outcome, then not sure I would !
I am scared as I already know just what they will find,
Pray as never before for God to forgive and to be kind !

Well had the tests, the scans, the samples, not what I thought,
Its so much worse, already spread, not much time to be bought !
The brain - well its there now, they can treat but just not cure,
Surgery to remove the boobs, the hair ?, loosing that for sure.

The hardest bit - telling the children, that broke my heart,
6 months they say, maybe less, but limited time until we part.
Hubby is hurting too - blames himself, wonders why he did not see,
He Proves his love every day, never once is he blaming me.

He held me close and said how much he cared
While other so called friends, lost for words, only stared
Its not often You see a fully grown Woman cry,
But then its not every day you are told you're going to die !

All is such a waste of life, when I really did know the sign,
but ignored each time, and said, that problem cannot be mine
So if any of this applies to you, then listen, please take heed
Chemo, Radio, Hormone - the sooner tackled, the less the need

Learn from me and, hear when your body says something is wrong
So important checking when your body tells its not feeling strong
Learn to examine as you should, get to know your body like your face
Have the Scans - the mammograms, ignore nothing that seems out of place

We start to die from the day we are born
Each day moves us closer to deaths dawn
We all get our alloted span, some do well, others not
But regrets do not help - we celebrate each day we've got.

Live each day as best you can, try to live in hope
Is better than to hide away while others cope
Every day is a special bonus granted us
Enjoy, relax, build memories without the fuss.

Some get no notice and never get that special meal
prepared with love to say sorry for the row today - it was no big deal
When we go, we hurt others, then leave them to walk alone.
remember us with love - but also remember we will not be coming home.
----------------------------------------------------
I hope no one,especially those affected by BC, will be offended by
My take on things. I did loose my Mother to BC but have also got
so many friends on here that have family affected by late detection
My comments apply to so many other Ca too, Prostate, testicular,
Changes to Skin Blemishes, abnormal Periods and bleeding.
I know this is probably posted to the wrong Forum, its the ones
who are less aware than the Mac Family for the absolute need,
never ever ignore Your body or put off Testing out of fear - Please
If one person listens, passes on and someone learns from this I will
feel I Achieved more than during the rest of my life.

J xx

'Desiderata': A Poem for a Way of Life

2011-03-29T15:32:06Z

Pour Yourselves a Glass of Wine Or a Cup Of Tea and Spend 10 minutes - its is Worth Reading and THinking About

Go placidly amid the noise and the haste,
and remember what peace there may be in silence.

As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.

If you compare yourself with others,
you may become vain or bitter,
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe. no less than the trees and the stars;
you have a right to be here, And whether or not it is clear to you,
no doubt the universe is unfolding as it should. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.

Be at peace with God, whatever you conceive Him or Her to be.
And whatever your labors and aspirations, in the noisy confusion of life,
keep peace in your soul.

Max Ehrmann

Today is Yesterdays Tomorrow !

2011-03-15T17:17:21Z

Advanced Prostate Cancer Patients Lament

( With deep apologies to Lennon / McCartney !! )

QUICK WARNING to any new Prostate Cancer Patients Or Carers, the following is my views, expeiences and hopes following Dx And Treatment for Advanced Prostate Cancer which is inoperable and all treatment is intended to slow its progress and not cure.

Prostate Cancer is easy to treat and cure if caught early, please ask your partner or male relatives over 45 to seek a PSA test - a simple blood test with a good indication to if further investigation is needed. Hope some of you get a smile from folowing !

Yesterday, all my thoughts of cancer were so far away
I was told today, its here to stay
Oh, I wish it was yesterday

I feel I will not be half the man I used to be
The cancer shadow's hanging over me
Oh, yesterday means so much to me

Why did the prostate have to go,
I am not sure, did they say ?
I was in shock, they said somethings wrong
Now I am scared and wish for yesterday

Yesterday, love was such an easy thing to make
Now an hours notice, and Viagra I need to take
Oh, wish I was as potent as yesterday

Why did the libido need to go, hormone treatment makes it so
masculinity, it seemed to take, Now saying I am a guy can seem so fake
How I wish it was yesterday

Making Love is not the world you know, and is not the only way to show,
to hold and cherish, and remember long sweet nites we both know
Seems a lifetime away, the days we danced to our 'Song'
maybe mean to say hold me, then nothing can be wrong.
we both had our yesterday

Yesterday love was the only game to play
Now I just want to stay - but Cancer is pulling me away
The chemo failed - but the radio therapy was worth a try
but we both know - I am going to die,
there is no Point wishing for yesterday

But Come on my Love - let us find time to rejoice
and enjoy our time, death never does give one a choice
We can waste time, can hide and plead, but death takes no heed
Yesterday now is so far away.

But we are us - tall and straight - we face our foe so let us walk
hand in hand, shoulder to shoulder, heart to heart and we will talk
Of dreams we had, of our life's desires, death cannot damp life's raging fires
I have learned to grow and I don't long for yesterday

We both have Today and so many just do not
we can mourne our loss of time or celebrate and live for all we got
I know my fate, no false hopes but peace and calm
To achieve my final dream, to rest my weary head on your soft and gentle arm.
yesterday may have gone - but I am so safe from harm

We have loved and fought so hard, battle scarred, but never lost,
Cancer hurts the body but we understand its Cost
It may rob us of life, and it can hurt so deep
but the spirit it can't touch, the love we share, we will always keep
I used to dream of Yesterday, now more than happy to settle for today.
---------------------
We all die a day for every day from when we are born,
Its what we do with the days we have that count,
not count the days we have left

Love and Hugs to All

J xx

Had my planning scan Yesterday (14th ) and start the Radio therapy on the 23rd March, 16 sessions. Update as they progress.

In Memory of 'Ju' Butler and a Wish for Jenni

2011-03-09T13:56:54Z

A lot of people on this Site know Jenni Butler and owe her so much for her caring and unfailing support. I just wanted to remind people that tomorrow Thursday March 10th is the Anniversary of the Death of her husband 'Ju', diagnosed with Cancer, originally caused by Melanoma. He died peacefully in Jenni's Arms.

Jenni lost not only her Husband but Soul mate, Companion and Father to their 3 Children, Daughter Cally, Son Luis and Daughter Jordan 'Jub'. The Journey with Ju had been long and hard although the end, as always, came too soon & sudden As so many on here know the heart ache, loss and emptiness experienced when left to cope alone can be so hard both emotionally and physically and everyone copes in their own way and time.

They say from all bad things some good things spring. In Jenni's case that may of been that she directed her loss, hurt and grief into a new career, both Challenging and Rewarding. With her caring nature and empathy she took on a new a position, Health Care Assistant in a busy hospital. She has learnt new skills and it seems thrives on the pressure and the responsibility she takes on, with the joy of success, tempered by the odd sad times - but alway handled with love, care and dignity for the patient.

Ju will always be such a special love in Jenni's life, that will never fade, he is in her heart and lives on in her children. He was a very special caring person and one of his greatest hopes was that Jenni would find happiness again in the future. Jenni has found someone who has brought company, joy and new hope into her and her children's lives.

I hope you will join me in remembering a very special person at lunch time tomorrow, 'Ju' Butler. I also hope you will join me in congratulating Jenni on the progress she has made and the hope that her health and happiness continues for a very long time.

Love and Hugs to a Special Friend

J xx