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Panache Sat 21-Apr-18 10:10:47

When I last spent time writing a blog I was indeed free of the demon cancer that had haunted me since those days in October 1984.........and for the next handful of years as I faced operation and treatments eventually for 4 major cancers.
Since then I have had 6 further skin cancers again involving treatment,operations and skin a very destroying disease.......... as the result of former aggressive cancer treatments.

However now again I am on that turbulent threshold of what seems to be perhaps further cancer,following many months of varying procedures am awaiting results of the second lot of biopsies,which is traumatic to say the least.
Far from being alone, as I know of so many awaiting alongside me,hence the need to get this blog written...... as perhaps a sort of stepping stone for others facing these traumatic times, wondering how to get themselves through such worries.

But it has also focused my mind on how I ever got through after the first unpleasant batch...........and made a life for myself.
Perhaps it is one well worthy of sharing;because so many of us travel down these difficult routes and find ourselves at a loss of where and how to move on.

My story begins soon after my return home after 6 weeks of intensive cancer treatment in a Hospital specializing in the disease some 70 miles from my home.
I had been cushioned during those 6 weeks by meeting others suffering various forms of cancer; sharing our individual journeys had proved most cathartic;ensuring we had bonded well and had great support to start our very own routes when back home.
Perhaps the one greatest lesson we learnt was how Cancer (or any of these lifethreatening diseases for that matter) are a great leveller, because we were there all there together,whether a millionaire or mere pauper..............our fears were very much the same.
However,in most cases these dear ones had in numerable family back up,which is invaluable when facing deeply troubled times.
This is an area that we totally lose out......we have no family backup.
We had just struggled through very many years of hardship,with my husband losing weeks off work.........and pay....due to being at my side through those times of near death experiences, as I lurched from one operation to another,and from one Hospital to another.
With my husband...... working 10 hour days some 6/7 days a week at home was very lonely,especially in comparison to the cameradrie we had all experienced just previously
In fact I was on the verge of deep depression.

A quitter I am not,and I am blessed with determination and a fighting spirit........ and the one thing I enjoyed at all times was writing
.So I picked up my pen and I wrote to all those that I knew to be suffering or recovering from the disease,that quickly snowballed into sending cards when they had special appointments,had to meet Consultants,undergo procedures,face results.......all those testing times.Then came those long telephone conversations,
and wherever possible...... even visits.
This generated such a lot of contact, it was dubbed The Sunshine Club!!!It certainly brought many a smile to very many faces.....including my own.......there was simply no time to be depressed.

The McMillen Nurses had noted what a great uplift this line of communication was,stretching out right across the whole area of our County................ and so I was approached and asked would I form an official Cancer Support Group.
In fact, that was the beginning of the very first Pembrokeshire Cancer Support Group,we arranged meetings in a nearby Hotel room,devising all manner of raffles etc to meet the costs,and from the dozen or so that eventually formed the almost every Town and Village has one of their own.
Gaining inspiration from these meetings, I especially formed a friendship with this one lady,also a recovering cancer patient, but whom was also nursing her husband with the disease........she had already started up a first AA group in our County..... as sadly, she was also a recovering alcoholic.
A lady that had a real battle on her hands.
We struck a cord,and formed a bond.
We both shared the same dogged determination,the same drive and we could visualise the great need in our county for a Cancer Centre........and this became our focus and aim.
Whilst continuing our counselling,gathering donations,having car boot pay for our Hotel room for our Support meeting etcs.......but our minds were busily formulating plans to get our dreams into fruition.

During this time another dear lady,a terminally ill cancer patient, witnessed our drive and the crying need for a place of our very own,whilst obviously believed in us so in due course she donated her most beautiful double fronted Victorian Manse for this one specific purpose.
As you can imagine it was a wonderful,l very meaningful and heart rendering gift,that brought tears to our eyes......equally of joy and gratitude..... whilst feeling the pain of this particular lady.
However it then started a very serious time of hard work........raising public awareness to our needs,establishing all manner of money raising events,visiting many firms.....virtually going "cap in hand!"........whilst chivvying each and every able pair of hands into working over time....... to turn this lovely property into what we envisaged.
This detached property was situated in one of our Towns,not ideally in the centre of the county perhaps, but on a wide quiet residential street,facing south and greenery.It had 3 floors,a large back garden,a front courtyard.....was in supreme all the retaining features of a Victorian property.
All floors were utilized.............initially the back garden was dismantled and the ground tarmaced to provide safe door to door parking facilities.A Stair lift was fitted to make all floors accessible to all,and eventually the lower ground floor housed a complete commercial sized fitted kitchen.....with ancillary rooms used to house freezers,larder and the like.Two other rooms became a fully functioning restaraunt.
The ground floor, with its large sun filled bay windows, became meeting/seminar rooms,a fully functioning library/quiet room,a music library..........whilst upstairs became respite rooms with ensuite facilities, plus therapy rooms where various many therapies became very much part and parcel of every day life for those in need.
The front courtyard became an out door sitting area in warm weather
.We had our very own Chaplain..........the restaraunt served beautiful meals for meeting days,plus a take out facility for those bed bound sufferers........and Christmases/celebrations were especially a treat.
It was most beautifully furnished out from donations and kind hearted gifts presented weekly,it really became a sanctuary and home from home for many patients...... and their families.........all whom were made welcome.
A Charity Shop helped supplement the donations,and there was funding by our own NHS......... who had backed this scheme from start to finish.
It was opened by a well known T.V personality and simply went from strength to strength........... with eventually many willing hands helping out.
However when my partner lost her battle with the disease, it was decided to dedicate the building in her name in aid of her hard work.
At that time my husband and I had been working on several Hospital Committees,begging,praying,pleading for yet more cancer services to be brought into the County,we were actually quite bereft and had obviously been forgotten for many years,and slowly we were achieving something precious on each week,or at least each month........our County was on the map again.......regarding renewing up to date Cancer services.
Such a welcome and great boost for all cancer sufferers following on behind us .

But there was still one vital area that had not been addressed and we both felt this was the final goal,and must have....... as we had encountered so much real need,and much grief................... as we travelled around visiting dear cancer patients in Hospitals,at home.

We needed a Hospice.

It was indeed to be our one further aim.
Again it was to be a question of being in the right place at the right time it seemed!!
During all our meetings with various Hospital Committees, we had met this one lady who showed such great interest in our work in developing this beautiful Cancer Centre.......which she now visited weekly herself.......little did we know at that time,but she was a lady also determined to make a mark here in our beloved county..........and she eventually donated her own home,a bungalow, in the Cathedral City of St Davids with the sole wish that this should become ..........a Hospice.
The lady was Elizabeth de Guise.........a rather famous authoress.
It took something like 15 long years to get the eventual permissions to turn a bungalow in a residential area into a Hospice,it took years for planning to get permission to extend,change and adapt this property...........and though a member of my family remains the solicitor throughout..........our own involvement was mainly through raising awareness and cash.
We ourselves had our Silver Wedding celebrations during this long period of little happening,and we instructed our friends there were to be no gifts........ though if they felt inclined.... they could donate cash to our Hospice Fund.
On opening those envelopes containing cash just after our own
anniversary, believe you me, we were deeply touched to find that no one had donated less than.............£50......This may not seem a fortune to you, but please remember, these dear ones were mainly of pensionable age and many disabled.It touched us to the core,realising that these people believed so much in what we were trying to achieve....... that they had dug very deeply into their pockets.
It made the project even more poignant.
Only during these latter years this Hospice has been duly completed.......... and now fully functioning.... though very small......we still believe that from small acorns mighty oaks doth grow!!

However, although my very own legacy of Cancer Support Groups are very much alive and flourishing I am delighted to add, very sadly,the same cannot be said for our beautiful initial Cancer Centre.
The original was eventually sold some 8/10 years ago..........when the NHS funding was at first halved,and then
completely taken away.
In its place, a town house in a busy street was purchased so that the ground floor could be utilized as a shop....... providing much needed funds,leaving the upstair rooms only for stair lift,no parking facilities.... so in fact very far from ideal
for purpose................ and so far from the beautiful original Cancer Centre formed between the two of us most heavily involved.........and the kindness of the lady who first donated her beautiful Victorian is a sad loss.

However, although my story touches on many varying aspects, the idea behind this is simply to promote the feeling that, yes,there is life after Cancer.It may not be the route you personally wish to take,we are all individual and we have to follow our own heart and what may work for us.
Getting so deeply involved in Cancer care........and all life limiting illnesses in my very own County....... has proved highly cathartic and encouraging for me through my long haul.
I was only 44 years when this Cancer story began.

Today I am very much older,frail from other pressing diseases,and cancer possibly revisiting yet again...........and the out look is totally different....... as I certainly have not the same stamina to fight the good fight .........other than on paper.
Yes,I remain equally busy on paper and computer......ready to reach out and proffer an understanding ear,a helping hand,some uplift and may not sound much after the former involvement........but it keeps my mind ticking over and I prefer to think of others.... and reach out to them in their hour of need.........than sit at home here,biting my nails and feeling sorry for myself!!

Dear bet your life..........yes.......there is life after cancer.........

grannyactivist Sat 21-Apr-18 11:51:55

What an inspiring account Panache, you obviously have a 'can do' spirit. smile

Grannyknot Sat 21-Apr-18 13:34:30

Gosh Panache That's impressive.

kathsue Sat 21-Apr-18 14:16:39

You are an inspiration, Panacheflowers

silverlining48 Sat 21-Apr-18 14:18:12

What an inspiring story panache. It hits home for me as my daughter, in her early 40’s, has been having extensive and long term treatment for bc and also my husband with pc.

Well done for all you have done, you have super amounts of both drive and determination and am sure the work you have done has benefitted so many people.

Grannybags Sat 21-Apr-18 14:33:56

Very impressive Panache Wishing you well when the results of the biopsies come back flowers

Situpstraight Sat 21-Apr-18 14:47:32

Well done panache it’s good to hear that something positive has come out of such an awful disease, my 25 year old daughter is a ‘survivor’ and I thank God every day for that, however a friends young 13 year old has been in and out of hospital for more than half of their short life and is now going into a hospice, my heart breaks for them all and I can think of nothing positive to say about that.

Situpstraight Sat 21-Apr-18 14:48:26

Sorry our DD2 was 25 when she had Cancer she is now 44.

Auntieflo Sat 21-Apr-18 15:19:40

What a story! Panache, thanks. How on earth did you find the strength to go on and do all those things when you had such a debilitating illness? I admire your tenacity.

Anniepops Sun 22-Apr-18 06:43:25

What an amazing woman you are.

Marmight Sun 22-Apr-18 06:53:41

What an amazing and uplifting account. You are an inspiration!

MawBroon Sun 22-Apr-18 08:43:01

Lost for words Panache flowers do not seem enough

silverdarlings Sun 22-Apr-18 09:03:12

The PEN is mightier than the Sword--Panache+


Nannylovesshopping Sun 22-Apr-18 09:46:42

I am so in awe of you and your amazing work, you are truly an inspiration flowers

Fennel Sun 22-Apr-18 16:52:08

I'm full of admiration for you, and your determined attitude. And the effort you're putting into helping others.
Things have certainly changed for the better since those days when people wouldn't say the word cancer, and kept it hidden from others.
Keep posting on here, you're an inspiration. And wishing you strength to go on fighting.

mostlyharmless Sun 22-Apr-18 18:11:11

An amazing story Panache. What a lot you have achieved despite illness and hardship.

Panache Mon 23-Apr-18 08:50:47

Thank you all for your kind words, although please believe me, this was written only to reach out to help,perhaps steer others facing these unpleasant problems who maybe finding it difficult to find a clear path through the morass.
I hope it does offer that help to those in need.

annodomini Mon 23-Apr-18 09:30:14

Panache, Gransnet is a better place for having you on board. Thank you for your inspiring blog. [sunshine

annodomini Mon 23-Apr-18 09:30:30


Joelsnan Mon 23-Apr-18 10:33:58

You are inspirational. As someone at the start of the long treatment route your determination and good spirit will spur me along during the dark days. Bless you xx

farview Tue 01-May-18 17:52:32

Oh *Panache *so in awe of your amazing strength,what a truly wonderful person you are,to go through so much yet think of others is commendable! Sending you love&hugs,if there where more people like you this world would be an amazing place!sunshineflowersx

Mapleleaf Wed 02-May-18 23:12:20

You and your friends are truly amazing, Panache.

lemongrove Wed 02-May-18 23:17:38

Well done Panache ( and a great name too!) smile
Will keep fingers crossed for you, as you go through another worrying time.

Gilly123 Fri 11-May-18 13:18:01

Oh! Panache - what a wonderful person you are. Your story although obviously not the same surely is similar to Penny Brohn and what came from her personal experience?

People such as you go beyond the 'pain both physical and mental' they are suffering and find the strength to help others because they 'know' what is needed. To have that power to rise above your own health battles is truly amazing. I know as you have said you have had the wonderful support of her husband and our husbands suffer in their own way watching us go through this.

I was privileged to meet Pat Pilkington when I stayed at the Penny Brohn center and she would just chat to you as though you have always known her and she was there for you.

It is strange but one thing I disliked was when I was told by the the consultant in the hospital I went to for the 'One Stop Shop' diagnosis was 'You are now going on a 'cancer journey'. It was a phrase I disliked - journeys should be fun. Anyway I didn't want to go on a journey I wanted to go back to work and get on with life like the day before!

Several things happened within the next few days leading up to my admission. I did my research and got my questions ready at the pre-op appointment. Resulting in I got myself out of that hospital, will not go into the details as to why but I knew I couldn't deal with them and my cancer, we didn't 'sing' as they say from the same hymn sheet. (I am not religious but the phrase suits the situation.)

Looking back I don't know how I did it - nearly sent myself 'around the bend' with my husband panicking because I was refusing the op the next day and instead finding a hospital I felt safe in. I got myself into Bristol and the first meeting with the consultant - I knew - I would stay there.

Bristol was a long way to travel - but - I knew they could help me and they even let me see a psychologist and she was lovely. I did not have any support groups on my doorstep as we live in an isolated village. To have had one of your welcoming centers nearby - what a haven!

At the end of the day it is about finding the support that suits you - we don't all like the same - here at 'gransnet' is an example of what works for many and has already helped me.

Can I say 'thank you' for being you and my very best wishes to you and your husband. Gilly flowers

Panache Fri 11-May-18 15:53:59

I am deeply touched Gilly123 but more than interested in that we both felt the need for the same influence as we faced our cancer diagnoses .

Having found the severe shortage of any advice,back up,support etc when nursing my Foster Mother......and in such dire need.... I just knew when I was also diagnosed not too long after her death that there must be others feeling much the same,something needed addressing,and fast.

Penny Brohn was a life saver in my instance,as obviously in yours,she spoke with such simplicity and honesty,you knew instinctively she understood and so you had no qualms in taking aboard her advice......just as you did and as I did too.

My husband cleared out our entire larder and we started from scratch following their Bristol Cancer diet to the T......for two long years we both followed without putting a single foot wrong.Although my Consultant was initially rather dubious,I think he saw in me someone whom believed with all their heart, and although happy to follow the conventional route to a point, I so wanted to add complimentary therapy ..... and so he gave me his blessing,although kept monitoring me every step of the way.
Having undergone so much surgery followed by aggressive radiotherapy I was certainly in a very low place with a shattered immune system and extremely weak.
However all along, I kept my spirits up, aided by this diet and I firmly believe it to be the catalyst that most benefited me and brought me through all those cancers.

We certainly have much to thank Penny Brohn for,and of course the whole team. I do believe the initial seeds for our Cancer Support Group and then Cancer Care Centre were born from these beginnings......and from those early seeds great things followed although yes,it involved much hard work,a great deal of begging for donations and then hearts that had dedicated never to give up!

Three big cheers to the legacy of Penny Brohn and her team....... whilst may you have good health from here on in Gilly