Sunday, 13 October 2013

Excuse me I don't like pink!


This is a part of my healing,to put out there publicly how I feel right now. It may be that you need to move on by,I am just outpouring,I do not want anything like revenge,more anger,just change and awareness for others in the future. I could not change my experience so in away I am letting go.


I was at my Mums funeral this week, I obviously am feeling a bit raw, so you may excuse my thoughts, there seems to be ads,news,posters all reminding me my mum lost her battle with cancer.
The Macmillan ads are strangely comforting,but make me so terribly sad as these lovely people got involved far too late.

My battle with NHS services to get my Mums basic care needs met, our experience was desperate, her needs were not dealt with. She was filled with fear and even just basic human needs were neglected, for a woman who worked in the NHS  I found this the appalling part.


My Mums last two months were filled with tears, frustration and at times pure panic as she reached out to me and I battled along with her friends to get her equipment that was promised and then just not delivered, or was put together incorrectly. 

Firstly a carer who spoke little English and did not bathe my Mum, as she had lost her voice in those last few weeks, her written request to the carer, was not understood .My Mum a woman who didn't complain or moan once, got abandoned by the service she worked so well for. Not even a wash in  five days for a woman who was spent time looking well groomed. How low she must have felt.

An inflate mattress that should have been in place for her return from hospital,that could have saved her skin from being pressure sore due to lack of movement took  a week to beg for and believe me I did beg.

I cried in the end,I never shouted, I just cried and challenging  a woman on the end of the phone not to go home and enjoy her weekend, leaving my Mum in discomfort as her weekends were over now! 
Hearing for 12th time that week I was told it was being dealt with "Somebody will be in touch on Monday!" was enough to send my tears rolling!

I got that mattress,oh how the joy was short lived, my Mum was taken off the original hospital mattress bed a really exhausting and painful procedure, the mattress was replaced, Mum lifted in, the mattress inflated but it did not inflate. As it was the evening she had to be put back on the original mattress to wait for an engineer! 

The engineers words the next day " Numpties were sent to do this,they have not closed the valve so they were pumping air was in and straight out! (The numpties in question were a community nurse and matron) 
Mum then had the awful transfer back and forth but she was in it,air circulating to keep her going.

Sadly he missed another of their errors, not dealt with as Mum never made a fuss. While a Macmillan nurse was visiting for the first time the alarm on the mattress beeped constantly,a loud noise that Mum put up with for a while but they were turning off the airflow as it kept her awake.
A new engineer was called and of course came in working hours the next day, to find the electrical connections had been hooked up wrongly. 

I feel like I am ranting but the oxygen mask was another story as above, I won't go through the  days it took to sort I will just say, Mum was gasping for breath right from the start of all this.

Imagine feeling stressed by just having to get oxygen, add in the faff of the inflate mattress and then the cock up with masks, which do not just get delivered, they need a special request from a respiratory nurse who never picks up a phone. This not because she is inadequate,just because she is overworked and out in the community!!

My falling down moment was in my head when my Mum grabbed my hand and I have never seen real terrifying fear in somebody's eyes and mouthed "Its all a mess! No complaint,no rant, no sorry for herself moment,just a statement of fact! 

My Mum died days later she was exhausted, worn out literally,she had no rest. Her prognosis was not a negative one,her heart was strong,the Macmillan nurses were moving her to their hospice and expressed surprise she had not made that journey.

The last few weeks have been a daze but the Pinktober has been a constant.

 Today it seems too twee, dainty, fluffy not nearly enough to create awareness of what a b******d cancer is!

The pink theme has really got to me more,I amallfor anything to raise learning,money,research!

 I actually would like to see action that really does not fluff up the subject!. I am not keen on pink, my daughter was seldom in the colour, I did not like the gender stereotype. Its a family trait, not feminist at all, more that it seems to define a weaker Barbie type female that I don't really see in real women particularly my Mum these last few months. Iamnot attacking people who like the colour at all,its just not my preference.

Since its been used for Breast Cancer I have so far thought it was something I should stop being so uptight about, get over it, so I have supported this as many of us have, but today I read this blog from a breast cancer survivor. 

Not just her feelings but scores of women in the comments made me realise its disliked by more than me!  Her words actually relays a little how I am feeling,so please excuse my lack of love for the daft sentiments!

You can read the whole thing  here 


***10/9/2013:  I have been completely overwhelmed by the number of visitors this post has received in the past few days (over 130,000 at last count!).  I am not sure who first shared it — or who continues to share it — but I want to THANK YOU all for visiting, reading, and sharing it.  I think the realities of breast cancer are so often trivialized and “pinkified” so I am sincerely grateful to everyone who has taken the time to read or share my blog.  I am sorry to say that my story is just one of many, but with your help, we may just be able to change that.  Please feel free to leave me a comment or to share your own story below — or send an email: cancerinmythirties@yahoo.com .   And look for my latest post — My Version of National No Bra Day — later today.  Thank you all.   ~Leisha ***

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I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles, but seeing October 13th advertised as “National No Bra Day” and as a “fun” way to support people with breast cancer has pushed me over the edge.
Are you kidding me?  How on earth could a day where girls and women are encouraged to walk around with their nipples poking through their shirts be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission?

29 comments:

  1. This is an excellent post and I am so very sorry about your Mother, I am also so sad to read about your let downs with healthcare staff, as a soon to be registered nurse I endeavor that none of the patients I treat will ever have to go through unnecessary stress and upset than ever needed. Keep strong. XXX

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    1. Thank you Helen. I imagine you will be fab,met some great nurses this last few months.

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  2. I am truly sorry that you and indeed your mum had to suffer through such a trying time, when already dealing with something so incredibly hard. My heartfelt thoughts are with you and your family.

    Having lost people to many forms of cancer, I recognise the need for a unifying theme when attempting to raise awareness of a particular cause or charity. Having read your post I realise that the very reason those adverts on TV irritate me are because of those exact reasons you mentioned, it's too 'fluffy'.
    I was a complaints manager and council liaison for a nursing agency some years ago and I don't mind telling you how disgusted I was at how people being cared for were treated. I was basically told to lie for them and when I refused and went to the council with my fears, my life was made very difficult. I wrote a letter detailing everything I knew and what was being swept under the rug, then handed in my notice. It is disgusting, people deserve to have dignity and respect regardless of their ability to convey those needs, it isn't rocket science, some of these 'carers' are just lazy, ill-trained or down right nasty. Of course there are many wonderful and amazing ones out there, just not enough to go around.

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    1. Thank you Erica, I can well believe your fears were not listened to. It shocked me most that the ability to care was missing, that it was in a sector that is basically about caring was the most saddening! I have dealt with customer service for most of my work. As a mystery shopper I always look for the positive, this has been in retail, banking,leisure, though I have mystery shopped counselling services, if the experiences on the telephone and face to face I came across went through a similar check,most would have failed miserably.
      I have been advised to complain, although I am one for a fight for injustice and have done this many a time, but a caring profession that is swamped with bureaucrats and administrative staff who are failing the true carers in the health service not to mention the patients, I know it will fall on deaf ears! I don't want to fight against the system,I will just try and change some of it. The woman who dealt with my Mum,said she felt ashamed that she had not acted quicker that week with the mattress,my crying reached her heart.It was heard and hopefully brought a small change.

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  3. I am deeply upset by this post and the fact that your mum suffered without complaining! What a strong, brave lady. I've never understood the use of pink when talking about breast cancer and the fact it's mainly women who are targeted to walk/raise money etc, it's incredibly sexist considering men can get it too!

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    1. Aww I did not want to upset others, my pain today comes as the shock subsides and I am reflecting on it all. Yes and men do have breast cancer.

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  4. I'm so sorry to hear how your mother's final days were spent. Nothing can ever bring her back but at least the system ought to have left you with some good memories of her at the end of her life, not bitter memories of the battle to make her less uncomfortable

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    1. Thank you Jane. That in a nutshell is exactly how it is.xx

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  5. I am so sorry about your mum Jo. It is so awful that the NHS failed your mum in her final days and I totally agree with you pink is such a wishy washy colour.
    I wish I could say something to make it better, alas I know I can not. Thinking of you and your mum

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    1. Thank you Mel, you have been such a good support and you do make it better.

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  6. Jo, I have read this through tears of desperation for you. What you must have suffered, watching your Mother in this way, I cannot even begin to imagine. You are such a lovely supportive person. As I've been trying to get my own blog off the ground, you've been there, in the background, offering support and encouragement. And all the time, I never knew. Didn't have a clue what you were going through. So, what I just wanted to say was, I'm here for you too, if you need me. Xxxx

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    1. Lucy happy to help always. It was tears of desperation,I couldn't quite believe it was happening, every day I was on the phone. On my last (and only day out in over a year) with Paige before she went to uni,I was at the beach and on a touristy train ride, at a cafe, still attached to my phone, ringing around just trying to get somebody to take action and deliver a mattress that had been ordered. It wore me out for two weeks when I just wanted to be concentrating on my Mum and my daughter leaving.

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  7. Wow I am so sorry about your mum Hun and how awful her basic needs we're not taken care of, I hope someone has at least had the balls to apologise to you xx

    Beautyqueenuk xx

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    1. Thanks it is unlikely,the Macmillan nurse has had a meeting about it with the services to question practices. My Mums Drs, who was her own Dr but also where she worked didn't even know she had died. I rang them five days later to query something and her friend broke down as they did not know. It was a terrible shock. She said for somebody who had worked for the NHS and done her job well, to not get the basics in place made it worse.The hospital had not even informed them, the admin side in their London borough is abysmal.

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  8. Jo, I just want to come and hug you xx
    It wont help but I'm here if you need me hunny.

    Completelynecho your words and have said rhe same thing already this week. My mil is dying of secondary breast cancer of the lungs, liver and spine and the very next person to inbox me on fb to add a heart of a poxy fruit as my status will get thumped. Xxx

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  9. Thanks It does help. The FB inbox is awash with irritations when you are feeling tender. xx

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  10. I cannot imagine all you had to go through it makes me angry how people are being left to suffer through these awful times, I'm speechless.

    Sending you *hugs*

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  11. I feel your pain, I went through similar things when my mum was diagnosed. Head and brick wall springs to mind.
    Stay strong and remember your mum was a massive part of your life and talking about her and the things you used to do really does help xx

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  12. wow, very emotional. macmillan are wonderful and offer everything a cancer sufferer could want or need.

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  13. Sending you a hug - I am hoping for you x

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  14. Thank you for sharing this experience - writing about it might help someone else to get through. I really feel with you and your Mum. You have made me think about the Pink theme and yes - I agree it is very fluffy and sanitized and doesn't really touch the expereinces of friends and relatives.
    I hope the pain of those final weeks heals - you shouldn't have had to deal with all that on top of the illness.

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    1. I hope it does help somebody else and thank you for your wishes, these commentes actually help a lot too.

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  15. Hi JO,
    I am sorry about the loss of your mother and the experiences she went through during her period of illness. I fully understand the sentiments you have expressed here. I have lost several family members to cancer including my identical twin sister. It not only takes a toll on the person suffering from the disease but also their loved ones and when things don't go right they add to the stress. I pray that you will be comforted. I am a new Follower of your blog. Take care.
    Judy

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    1. Hi Judy

      I really appreciate your kind words, cancer is such a heartless cruel disease, to lose ypor twin must have and still be so hard. My two are twins, that closeness is so special. You really lifted me with your kindness. xx

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  16. So sorry about your mum hun (hugs) x

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    1. Thank you, its so kind of people to comment. It still feels so raw.

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    2. So sorry about your mother. I lost my mother in 1989. A pain which never seems to go away.

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