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Hello, my faithful readers. I know there are one or two of you. Are you there? Are you awake?
Here is Buzzie's thought for the day - I would like to see if it strikes a chord with other carers ...
Do you remember me saying that my
husband and I had entered into the parallel universe which I think of as the
‘cancer world’. Until recently I assumed we had entered this world together. In a sense we had
– this disease affects us both.
But in another sense we entered into this
world through completely different doorways.
I had thought we were journeying
together through this parallel universe but in a very obvious sense we are not
and can not. In fact, there is a
yawning gap between our experiences and it is one we have not been able to talk
So I am going to try another metaphor.
In our house we are finding ourselves
having to live with an invisible and very unwelcome guest, a guest who is with
us all the time, hovering over everything that we do and who, like all
uninvited guests, is particularly present at mealtimes.
I have been scouring the world for
almost a year to find the ultimate weapon which will send this guest into
oblivion: shiny weapons devised by
the clever people in white coats, and subtle potions from the purveyors of
miracle cures which promise to attack this guest from within.
And as I witter on about some rare nut
oil from the Amazonian rain forests that is the latest miracle cure, and stir a
little more turmeric in the soup, and blend the raspberries into the smoothies
and remind him to take his tinctures that come all the way from China, I realize
that I am on the sidelines- the real struggle is playing out between this
uninvited guest and my husband. And
he is not talking about this battle, and I feel hopelessly ill-equipped to help.
But I can, at least, take the dogs for
a walk in the rain. Just as well I have recently bought some shockingly unglamorous
weather-proof gear for just such an eventuality.
Walking the dogs in wet weather, like unblocking drains, had always been my husband's job ...
Your blog made me feel sad, I realise how totally different it is for carers and trust me I wouldn't swap places with my loved ones. I am in control, I have the ultimate decisions in my treatment, they watch and wait - helpless. Not a feeling I would want.
At least here you can write exactly how you feel, where plenty of other carers know exactly how you feel and I hope that gives you some support.
Love & Strength
Your blog made me feel very sad too. The very key to this kind of understanding between patient and carer is talking and sharing, and I am just sorry that your husband can’t talk about this battle that you both fight and which would be such a relief for you.
I can understand the difference in perspectives, but having been on both sides, as carer and patient, I’ve never felt that yawning gap between experiences. As a carer for my friend and then my mother, and also having lost my father years ago and my dear step dad last year, we shared everything so that I was able to empathise with their cancer illnesses, as they sympathised deeply with my caring. As a patient, because I understood that I could easily die and if not, then my time was probably limited, I felt utterly sorry for my carer, my husband, who in turn felt the same way for me. So again, we talked which helped my husband share that awful burden he was carrying and helped me feel at peace. I know people handle things very differently, but it’s so helpful to discuss and share and I hope that one day, your husband will discuss this with you. At least as Debs says, writing can help and there are plenty of people who know exactly how you feel.
Peace and Love
Buzzie - I'm here and listening. Glad you have started. Thank you for putting into words what I can't say to people - not that many actually want to listen to the nitty gritty until it bites them on the bum & then they realise how hard it actually is.
Well I bought some very glamorous girly wellies & they lasted all of 1 month whilst looking after the chooks - mind you they loved to peck at them (whether in disgust / not I relly don't know) so maybe that's why they wore out !
Your blog also made me feel sad and if im honest tearful.My partner and myself do talk about his cancer but mainly because i talk about everything and he just goes along with it all.Although we do talk i do still understand where you are comin from in your blog.My partner was a carer for his wife when she had cancer and he has always said that he would rather be a patient than a carer any day as being a carer is so much harder.The problem i have is with other people who i know mean well but that just havent got a clue,but then thats another story!
sending you much love and lots of hugs Buzzie
OMG - Buzzie - I can totally relate to how you feel. My husband & I don't talk about it either, and yet "it" is always there forming a "basecoat" to everything that happens. Hubby is very positive and upbeat, and he's convinced that he will be one of the 5% of people who could statistically expect to beat this. I can't bring him down, and so I go along with the cheerfulness and therefore have nowhere to unload my fears. We've exhausted conventional cures, and are now into our 4th "bout" of alternative medicines... Who knows? Maybe something will work. But until then, the anxiety continues with no place to park it.
Thanks to Debs, Crystal, Jewels & Ladybug for replying with their thoughts... and special thanks to you Buzzie for being such an eloquent writer. I have found this site to be a life saver for me.
Love to all of you!!!
Thank you all for your lovely comments.
And, dear Maureen, I know exactly that feeling of having 'no place' to 'park' the anxiety. My husband is also convinced he is the 5% too!
Debs and Crystal - you have both helped me so much with your calm and bravery - thank you.
Joules - I am glad it hit the right note. I was fumbling a bit .. Love to you all, Grace.
I do so know how you feel. My husband G is also convinced he will have a good outcome. He has been positive from day one that he will fight his Mesothelioma with everything he has. All I can do is support him as best I can. When he heard of an innovatory chemo treatment available at the University of Frankfurt, he signed up, even though the cost will sadly deplete our savings. Since August, we have been flying over once a month. On Thursday he was told that the tumour is biologically dead, and is unlikely grow again, although a second may eventually grow elsewhere in the lung. So, now, we can look forward to the family Christmas that a year ago we never expected. I don’t expect that G will ever realise how hard this last year has been for me, but in my heart I know that I have given him all the support I could, from my side of the parallel universe, and I try to be content with that.
Ladybug - You wrote:
"The problem i have is with other people who i know mean well but that just havent got a clue,but then thats another story!"
What did you mean by this? I have a sneaking suspicion that I'm going to be able to relate!
Love to you all. Mo
Buzz, your feelings are exactly what I experienced, your endeavours so similar to my own. Including the rasperries.
Ladybug - thank you for your comment too. Maureen needs an answer. Give it a go!
And pusspins - I am still at the raspberries!
if all else fails as a patient.......head ...sand...bury, comes to my rescue.....handy seen as the beach is just across the road from me....
If only we could show the uninvited guest the door! All we can do is block the opening for as long as possible. I tell people that it feels like I am on a continuos roller coaster. In times of crisis it speeds up, then, panic over, slows down, but never stops for me to get off.
Hope you have a good day
Sorry - something weird has happened to the order of these blogs ...
I cannot quite understand how the carer copes, I was the patient, no choice in the matter, nothing to decide, just had to do as I was told. The carer is the rock, the one with strength, the one who puts up with all the moods and 'downers'. The carer is the motivator, the main cog in the wheel.
I salute all carers, thank you to you all.
I have always 'lovingly' referred to hubbies unwanted additional part as 'the squatter' as it broe into our lives, uninvited and unwanted, caused damage and although now gone has left the potential of a return visit... just like squatters!
Our squatter has also moved us into a parrallel world that moves alongside albeit at a different pace to those not introduced to squatter, that part is hard enough to deal with but not insurmountable as ther are so very many people this side that understand and become friends that truly understand.
The squatter in it's mindless manner, has also build the glass wall between us too which is harder to deal with as the glass wall is sound proof sucessfully distorting and modifying messages from one side of this wall to the other. we can still see, 'hear' and touch but the channel of communication are badly distorted....... the path we embarked on together many moons ago when we were uninitiated in this world and that had been one has also been divided by this squatter !
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