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
