Wednesday, 3 January 2018

But it’s not cancer!


I had just been diagnosed with breast cancer in my 30’s when I read an article in the Herald which mentioned that breast cancer was the "sexy" cancer to get. I was furious and ranted for days about this. If anything didn’t make me feel sexy, it was dealing with the fall out of cancer treatment. My scarred breast with surgery and radiotherapy was painful and forever changed, my confidence and wellbeing at rock bottom, my anxiety levels high, I was in a state of exhaustion and hyper-reactivity. He ( and yes it was a he) went on to say that because breast cancer attracted attention, a whole month of awareness to itself, research funding it was kinda cool to have breast cancer. He seemed to believe there was a pink hue that coloured it all away. I wrote several letters to the paper ( those were the green ink days, no twitter then to express disgust) but tore them up. None were ever sent. My release was a tear soaked pillow- and not for the first time.
I’ve been reminded of this recently as I’ve adapted to another loss of wellbeing. This time a bony growth on my spine with the impact of chronic pain and loss of mobility. Definitely not a sexy condition to get. My only nod to frivolity is a fancy walking stick. It’s not really up there with walking round the streets over night in a decorated bra, is it? 
And the contrast doesn’t end there. Because breast cancer isn’t in anyway a cool or sexy condition to get but what it does have, at least at the primary stage of diagnosis, is a clear diagnosis and treatment pathway and a well established network of support. In my recent breast cancer diagnosis I was diagnosed promptly, treated promptly, referred to specialist nurse and linked to a Maggies centre and Macmillan project as well for support. That not only has the impact of really helping with different issues and enabling the learning of new skills but you also feel valued; like your wellbeing matters to others. 
A diagnosis of a neurological condition has been so different. And I know from work I’m doing for the Neurological programme at the ALLIANCE, that is common to many other diagnosis across the spectrum of neurological illnesses. The neurosurgeon was kind and skilled in his diagnosis but also brutally honest in his assessment of my future, with or without risky surgery. It traumatised me and my husband. Our information support was google and it was less than helpful as this is a rare condition apparently. My GP was as shocked as we were but did suggest OT and community physio when I asked about it.  Then I turned to friends and family, many of whom are very knowledgeable on medical issues and so I built up a greater sense of what was possible. I asked to be referred for physio and the appointment took 20 weeks to arrive. Meantime I paid for several  physio appointments which were of limited value. I paid too, for a second opinion which confirmed the first one but at least that settled my mind. No nurse specialist exists to support you through diagnosis, no clear plan is available, no easy access to physio that’s appropriate, no signposting to charities that can help. At times I feel lost in a maze not knowing how to escape. 
As with a diagnosis of breast cancer I don’t know my future, and that kind of uncertainty is after all familiar to me so I’m relatively resilient; having learned over many years to stay in the here and now as much as I can. But the kind of trauma these types of diagnosis has frequently results in a type of PTSD ( post traumatic stress disorder) and I feel for those people who don’t have my experience and resources to help. The cushion that a clear pathway of care provides, including referral to support and rehabilitation type services reduces stress, improves skills and knowledge and helps you respond best to treatments. And what’s more you feel like you matter. 
It’s a strange serendipity that has led me to be working just now on the Neurological programme at the ALLIANCE but what I have learned through my own experience I will be putting to good use while I’m supporting that vulnerable community. Because we all matter and there is so much that can be done to improve things. So in 2018 you find me managing my pain better, pacing myself ( and trying wrist crutches soon), with my sleeves rolled up hoping to make things better for others too.....and of course I'm planning fun times along the way.

 Wishing you all the best for 2018.  


5 comments:

  1. As a sign of gratitude for how my wife was saved from CANCER, i decided to reach out to those still suffering from this.
    My wife suffered cancer in the year 2013 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of abnormal vaginal bleeding, and she always have pain during sexual intercourse. . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cancer . I never imagined cancer. has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. cancer. has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

    ReplyDelete
    Replies
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  2. Hello everybody!!!
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    Hello everybody!!!
    I don't just know the reason why some people is finding it difficult to believe that there is a cure for herpes, I have been suffering from herpes since last three years with my husband but today I am happy that am cure from it with the herbal medicine made by Dr climent the great healer, I was browsing the internet searching for help when I came across a testimony shared by someone on how Dr climent cure her from Herpes Virus. I quickly contacted him to get the cure and today i am now free from the virus, I am so much happy today that we have someone like this great healer out there, so' people out there kindly contact this great doctor please sir keep your good work cause there are people out there who is in need of your healing medicine. whatsapp him or call +2347036879479 or whatsapp him +2347036879479 drclimentscott@gmail.com drclimentscott@gmail.com
    He also cure
    (1) CANCER,
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    (3) HIV&AIDS,
    (4) URINARY TRACT INFECTION,
    (5) CANCER,
    (6) IMPOTENCE,
    (7) BARENESS/INFERTILITY
    (8) DIARRHEA
    (9) ASTHMA
    (10)SIMPLEX HERPES AND GENITAL HERPES
    11) HE ALSO HAVE SPELL TO BRING BACK ANYTHING YOUR EX LOVER. E.T.C

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    ReplyDelete
  4. HOW I GOT CURED OF HERPES DISEASE
    I'm here to testify about what DR. OSO did for me. I have been suffering from (HERPES) disease for the past 5 years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came across a testimony of one lady on the internet testifying about a Man called DR. OSO on how he cured her from herpes disease. And she also gave the email address of this man and advise anybody to contact him for help for any kind of sickness that he would be of help, so I emailed him telling him about my (HERPES) he told me not to worry that i was going to be cured!! Well i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as DR. OSO assured me that i will be cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, the test came out negative. So friends my advise is if you have such sickness or any other at all you can contact DR. OSO for help via email}
    drosohaberhome@gmail.com/
    dr.osoherberhome1@outlook.com
    CALL/WHATAPPS +2348162084839...........

    ReplyDelete