Alice… what's the matter?

breast cancer blogger

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Introvert. Online waffler. Breast cancer fighter. Dreamer. Maybe a writer, one day…

  • We take care of our own

    I worry about varying standards of healthcare.

    My Mum is currently having a course of chemo after discovering her second bout of breast cancer. She’s a healthy lady who doesn’t drink or smoke. She’s intelligent and she asks the right questions during appointments. My concern is that despite this, she’s receiving a very poor experience of healthcare from her local health authority and even worse communication from her doctor… who appears to be doing everything he can to avoid telling her important information about her treatment.

    Now I don’t know, but I get the impression that I’ve been pretty lucky – the people in Bedfordshire who are looking after me (note looking after) are efficient, kind, caring, communicative and generally have treated me extremely well. During my visits to the Primrose Unit I have never seen any upset patients and I’m not aware of any complaints about the local team. (Whether I would be aware, I don’t know, but I think that it’s a good sign).

    My Mum’s experience in another area of the country is not so great. There’s no dedicated cancer wing, and the hospital seems under-resourced and under pressure judging by the way the chemo has been administered. The nurses are not running saline in for long enough before and after the chemo drugs. Some nurses are turning the speed of the equipment up just to get finished quicker, meaning that my Mum is in pain whilst having the treatment (even when she asks them to slow it down she is sometimes ignored). This makes me very angry indeed. I am sure there are reasons that the nurses are doing this, but they have nothing to do with my Mum, and she shouldn’t be treated like this.

    Thing is, my Mum and Dad are both quite capable of asking the right questions and talking to doctors on a level that allows them to explain their rationale for the course of treatment. The fact that my Mum’s Doctor is not talking to them and indeed, appears to be avoiding them tells me all I need to know about the fact that this doctor is not making decisions that are medically in my Mum’s best interests.

    Is this the best we should expect?

    My Mum has had problems with the fact that her veins were not flushed through with saline after her first 4 rounds of chemo – so her arm reacted badly – she now has a huge area of inflammation on her arm which feels like it’s a huge burn – and she has been told it is cellulitis and phlebitis.

    This week, she went to an appointment and her doctor discussed with my parents the use of a PICC line (Peripherally Inserted Central Catheter) because Mum now has no usable veins on her arms – one is inflamed, the other is the arm with no lymph nodes, which everybody has said you should never allow to be used for injections and you should take care not to damage for fear of lymphoedema.

    Straightforward and makes sense. Now… suddenly my Mum gets a call from the hospital calling her in for her next round of chemo, but when asked about the PICC they say “no, you’re not having one, we’re going to use your arm”. What? Why? How?!

    So my folks then ask what’s going on. Not only does the doctor not have a secretary who can answer any questions (in fact she denies that it’s even her job really to deal with his enquiries, she’s part of a different department, she says) but nobody in this place seems to talk to each other. This doctor should be treating my Mum with respect and giving her the information she needs about her treatment plan if she wants it, but so far that has been sadly lacking.

    There are breast care nurses doing their best to scurry about and find out what’s going on, but the appearance to me as an outsider is that the department is severely disorganised and the doctor has gone AWOL – which immediately makes me distrust what they are saying and want to question what is going on.

    Why would a doctor agree a course of treatment with someone, then “change his mind” after the appointment and refuse to return their calls asking him to explain why he has changed his mind?

    The thing is, whilst the doctor might well be qualified to make these decisions, his inability to articulate them face-to-face with my parents makes me suspicious that they are not based on the best interests of my mother, and instead are about him trying to save money. Either way, the fact is that the healthcare team there are hideously poor at communication – which is disastrous and wastes both their time and their patients’ time.

    If you believe someone needs a PICC line, you don’t take that decision lightly, you certainly don’t reverse it without the patient’s involvement, and you certainly do explain yourself to the patient clearly and with sufficient information. Simple.

    NO WAY would I agree a course of treatment during a medical appointment and then allow the opposite to happen straight afterward. Would you?!

    Is this poor standard of care just something older women experience?

    An article today from Breast Cancer Care suggests that older women cannot expect the same standard of care in the NHS and wants to work to improve this. The study is focused on the over 70s which is older than my Mum – who isn’t an “old lady” and she doesn’t get pushed around! Regardless, nobody should accept poor treatment and if someone like my Mum feels like she’s being messed about, what hope do older ladies have, particularly if they can’t articulate their concerns as well as my Mum can?

    The fact is, this doctor’s actions have put my Mum under additional stress because he’s been inconsistent in his recommendations and also failed to explain himself. Uncertainty and stress could affect Mum’s health and her ability to fight off infection. Chemo is stressful enough on its own, as I only too well, so this is the last thing she needs.

    My Mum shouldn’t be made to feel she’s just being “treated like a number”. I think it’s completely unreasonable and I don’t think she should accept it. I certainly don’t think it’s acceptable.

    Do you agree?

    I’ve been knockin’ on the door that holds the throne
    I’ve been lookin’ for the map that leads me home
    I’ve been stumblin’ on good hearts turned to stone
    The road of good intentions has gone dry as bone
    We take care of our own
    We take care of our own
    Wherever this flag’s flown
    We take care of our own

    Lyrics by Bruce Springsteen

     

  • (Update: I can’t go for that…) / The SCAR Project: VICTORY!

    I was pleased to hear that The Sarcastic Boob’s petition on change.org had the effect she wanted.

    Facebook’s policy on mastectomy photographs is now a lot clearer meaning that it’s less likely people will fall foul of the guidelines and post something that will get their page banned.

    Facebook’s policy is here:
    https://www.facebook.com/help/318612434939348/

    Scorchy's avatarThe Sarcastic Boob

    Some weeks ago, I initiated a Change.org petition to address what I thought were problems with Facebook’s policy regarding images of mastectomy.  A handful of images had been removed from The SCAR Project‘s page and the project’s founder, David Jay, was banned from posting for 30 days for being in violation of Facebook’s terms of service.  In addition, some months ago Anne Marie Giannino-Otis faced a similar problem when she posted her own mastectomy images on Stupid Dumb Breast Cancer.

    So many women have pages that help to educate women and men about the realities of breast cancer.  Each, in their own way, actively pushes against the pink tide that focuses solely on awareness and early detection and keeps the reality of what this disease does to so many.  But these images are vitally important in that each tells a story;  and as they do, they begin to…

    View original post 349 more words

  • Red dragon tattoo

    One of the scary things about having these new bumpers in front of me is that at some point I will be asked by the consultant (Mr J) to book myself in for a nipple reconstruction. I’ve talked about it before when I wrote the piece about Angelina Jolie.

    Of course Mr J is probably going to be very keen to show off his best handiwork having got me so far along the process. From what I’ve heard from other ladies, he doesn’t really take no for an answer!

    Thing is… I’m not sure how fussed I am to have fake nipples fashioned out of my own skin. That skin is pretty tight as it is (I believe that’s a common problem with implants), so I’m not convinced I’m going to respond well to it being pinched up even tighter. It’s not like I will ever be able to feel them…

    Then, once the fake nipple has been made, I would also need to have the skin tattooed to make the fake nipples look the right colour and shape.

    Personally, I’ve never been keen to have any tattoos. I still have a choice, I could just say I’m not going to bother. The other option is to change my attitude to tattoos on a very limited basis and actually have a more interesting tattoo painted on me instead, (in such a way as I can choose to cover it up with a bikini, still). I found some interesting examples of scar-covering tattoos on ladies who have just had mastectomies. At least it would give me a chance to do something pleasantly creative out of something so unpleasant.

    One of the leading arguments in my head about not doing something a bit mad like that (other than pain and blood poisoning) was that skin goes wrinkly as you get older and tattoos cave in on themselves as they get hidden in the wrinkles and just end up emphasising the poor state of someone’s skin. In the case of my boobs, they don’t often get to see the sun so it’s probably a much lower risk than if I were a sun-worshipper.

    On my journeys around t’interwebs, I also discovered that people who don’t even need to, are having their nipples tattooed, or “tittooed” as it is apparently being called, if we are to believe the tabloids. Perfectly sane women are going in and getting tattoo artists to darken their nipples because they seem to think it’s fashionable… Eh? Nipple fashions? I guess having not gone on a topless beach in the south of France or cruising around topless on one of my many luxury yachts I probably missed out on nipple colour becoming a fashion statement. So will this become as commonplace as all the things like lip fillers and cheek fillers? I guess so, if there are plenty of people that want their nipples to match their spray tan and it makes them happy to spend money doing so, then why should anyone else stop them?

    Me? I frequently mourn for my real boobs because I wouldn’t have had my real ones amputated if there had really been any choice. I was happy with the ones I grew from scratch. Those were perfectly fine, thanks. No tattoos or extras included before breast cancer.

    But… I try to move on. Life is full of interesting twists and turns and I’ve spent my afternoon researching tattoos, which is something that 20-year-old me would have never believed I would do in a million years! Whether I actually do something different? Hmm… More on that another time… 😉

    Red dragon tattoo
    Is just about on me
    I got it for you
    So now do you want me
    With nothing to prove
    Will you be my honey, oh yeah
    In you I confide
    Red dragon tattoo
    I’m fit to be dyed
    Am I fit to have you

    Lyrics by Chris Collingwood, Adam Schlesinger (Fountains of Wayne) © EMI Music Publishing, Universal Music Publishing Group

  • Censoring mastectomy photos? I can’t go for that (No can do)

    This year, worldwide, it is estimated that 1.5 million people will hear the news “You have breast cancer”.

    Breast cancer accounts for 22.9% of all cancer incidence globally and is the most common form of cancer in women under 50. About 5% of breast cancer diagnoses will be in women aged 30-40 years old.

    When these women get through their diagnosis and treatment, a proportion of them will then have to make a decision about whether to have reconstruction after their mastectomy, and if so, the type of reconstruction to have.

    Where do we go for information?

    If I had relied on the information supplied by my consultant, I would be assuming that I’m a cartoon lady who doesn’t exist in 3 dimensions and has uniform size boobs. Not hugely visually enlightening when you need to understand what you will potentially have to live with.

    When I was planning my op, Keeping Abreast, a breast cancer support charity was forming a new local group in my area. It has volunteers at various stages of reconstruction who make themselves available at bi-monthly support meetings to listen to people’s concerns and speak openly about their own experience. They offer a “flashing” service where they find a private room for a one-to-one discussion and to show the results of their own reconstruction operations. I appreciate that some people making their decisions may not want to see other people’s healed scars, but from my discussions with the folks at Keeping Abreast I know that there are people who find this kind of thing immensely helpful.

    If you just do a “raw” google image search for mastectomy and reconstruction scars, you could be pretty freaked out by the end of it. (I don’t recommend it, to be honest, and I’ve already had mine done!) BUT – there are some responsible websites that are either dedicated to this kind of content but present it in a sensitive way, or else they allow you to log in to view photos that other ladies have uploaded showing before, during and after their operations. That does help because it gives you something to hope for, and something to discuss with your surgeon.

    I must admit that when I was making my decision whether to have the reconstruction (I could have just had the mastectomy) I was mostly focused on convenience – I didn’t want to keep spare boobs in my bra, or have stick-on nipples and I wasn’t sure I wanted to spend the rest of my life with no padding out-front. It was only after making that decision, seeing a surgeon to discuss the options and then some considerable time spent in research that I discovered these reconstruction photo resources.

    One such resource is the FORCE website (Facing Our Risk of Cancer, Empowered) which is a nonprofit organization in the USA supporting people with a hereditary risk of breast and ovarian cancer, with or without a BCRA positive test result. Specifically it has been useful for me, because it’s women in a similar position as me, who are sharing their stories and in some cases, photos as well.

    Another is The SCAR Project. (Just to prepare you, there is a photo on their home page of a young woman with mastectomy scars).

    The SCAR Project is dedicated to raising awareness about early onset breast cancer. It explores the impact and experiences faced by the women who have been diagnosed with breast cancer and carries a set of photographic portraits of young breast cancer survivors.

    The photographs have been taken by David Jay, a fashion photographer in the United States. The project admits its images are “unflinching” but it wants to “raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens”.

    I believe these are extremely valuable sources of information for people who are undergoing or considering undergoing mastectomy or mastectomy and reconstruction, because it shows the reality of the scarring (and healing) and gives people a chance to come to terms with the idea if they have a difficult decision still to make.

    However…

    Facebook, we have a problem.

    The SCAR project has a page on Facebook that features men and women with mastectomy scars. Recently there seems to have been some difficulty with Facebook concerning mastectomy photographs. Apparently, the SCAR Project has had a number of their recent photos flagged for nudity or inappropriate content, resulting in the photos being removed and the page being banned by Facebook for 30 days.

    Whilst I can totally appreciate these images won’t be everyone’s cup of tea (even though it’s a good cause) as far as I am aware people will only see the images from the SCAR project if they actually go and Like or visit the page. So David Jay has good reason to feel aggrieved that this important project page’s content is being treated in the same way as something pornographic might be.

    I have seen a number of articles about this over the last few days. As you might expect, the raggedy end of the newspaper columnists are positioning themselves as outraged and angry with Facebook, but The Scar Project has been pretty moderate in its own comments because in the main, Facebook seems to be trying to be supportive of such organisations.

    To demonstrate this, on Tuesday Facebook spokeswoman Alison Schumer had discussions with David Jay and a supporter who started a change.org petition, to discuss their concerns. Facebook admitted on that conference call that mistakes had been made, possibly due to the volume of flagged photos that they process.

    David Jay said, “I think it’s not lost on Facebook how important this issue is to so many people, and perhaps they’ll spend some time internally educating their staff about the types of images The SCAR Project has” and he says that the images “are what they are. I can’t imagine anyone finding anything pornographic or sexualized or even offensive in any way.”

    I’d say it might be useful if Facebook were to allow some method of appeal or voting if a photo is flagged by someone rather than relying on one potentially inexperienced or unobservant person to arbitrate?!

    Censoring mastectomy photos? I can’t go for that (No can do)

    I don’t expect most people would necessarily want to look at these pictures, but I don’t think it’s right or necessary to censor mastectomy photos. Why prevent people seeing them, when they have chosen to visit a page and might be helped by sharing them?

    If you agree, please sign the petition on change.org to ask Facebook to stop censoring pictures of men and women who have undergone mastectomies.

    Easy, ready, willing, overtime.
    Where does it stop, where do you dare me to draw the line?
    You’ve got the body, now you want my soul
    Don’t even think about it, say, no go.

    Yeah, I… I’ll do anything that you want me to,
    Well I’ll… do almost anything that you want me to, yeah,
    but I can’t go for that; No can do.
    I can’t go for that.

    I can’t go for being twice as nice,
    I can’t go for just repeating the same old lines.
    Use the body, now you want my soul
    Ooh, forget about it, now say, no go

    Yeah, I… I’ll do anything that you want me to,
    I’ll… do almost anything that you want me to, ooh, yeah…
    but I can’t go for that; No can do.
    I can’t go for that.

    Lyrics by Daryl Hall, John Oates, Sara Allen

    Key Sources:

    worldwidebreastcancer.com
    www.cancerresearchuk.org
    cancerscreening.NHS.uk
    Today.com article about the issue

  • Grief is a Freight Train (a tribute to Jackie Rose)

    This weekend was full of joy and laughter, campness and sunshine. This weekend was a celebration of life and an anniversary of sorts. You see, this time last year an amazing lady and a friend who I really only got to know in the last handful of years, lost her long-running battle with cancer.

    Luckily, very few people I love and care about have died in my lifetime. Most of them were elderly relatives who probably had a pretty good innings and who probably wouldn’t feel too cheated by their death. There have been a couple of friends who I’ve lost to cancer way before their time though, and one of them was Jackie. Death cheated us all when we lost her.

    Jackie had suffered a collapsed lung towards the end of 2011 and whilst that was a cause of some concern to us all, she had brushed it off as if it were a minor inconvenience and certainly nothing to worry about. She’d been such an expert at drawing attention away from her health, that in between the occasions we saw her, we hadn’t had cause to discuss her health more than a couple of times.

    When I discovered I had breast cancer and was dealing with the subsequent life-implosion that goes along with that, I truly had no idea that Jackie had fought cancer for many years, bravely and without so much as a complaint. I didn’t know she had the same consultant I was about to meet, and that she’d been having chemo in the Primrose Unit just like I was about to do. I also had no clue that she was about to lose her fight.

    She’d been so amazing at keeping the extent of her illness quiet, that none of her friends or family even knew about it. The only person who had known was her other half, Guy, who is as bright and vivacious as she was and between the two of them even on their bad days, they had more energy and laughter than most people have on their good days.

    She chose to take away all the risk of people focusing on her, by refusing to even let on that there was a problem. I have no idea how Guy managed to maintain the secret for her but I admire him hugely for being so strong and supporting her choice in the way he did.

    Initially when I found out that she’d not told anybody, even her family, about her breast cancer I wondered whether that choice robbed her of the chance to be surrounded by love and support the way I was. Having spoken to Guy, I have been reassured. I know now that she was such an expert at not complaining, even with him, that just getting on with everything was what made her comfortable and that she definitely wouldn’t have wanted anyone fussing over her.

    It meant all the time that she did have with friends and family wasn’t marred by their concern for her health and talking about cancer bullsh*t all the time, and instead we were focused on having fun.

    It also meant the news of her death was a complete shock, to pretty much everybody.

    On a sunny day on 27th May last year I got a call from Scov, to tell me he’d heard some bad news; Guy had called him to say he had lost Jackie who had died the night before. I can vividly recall where I was, sat in my sunny back garden staring at a rose bush, not really able to think, and feeling that yet another bit of my rickety world was crumbling away thanks to cancer.

    So yes, I’ve had a bit of a crap time on and off for the last 18 months, but I suffered nothing in comparison to what her other half had to go through, and it’s hard to imagine the depth of his feelings about losing her. His rock, anchor point, sounding board, other-half-of-a-double act has been taken from him. For me, his way of being stoical and trying to celebrate her life rather than just mourning, really helped me to set the tone for my own year. Guy has been so brave that it’s impossible not to draw strength and inspiration from it.

    It’s not a false bravery either, he talks about Jackie a lot and I think it’s really great that he does, because she’s someone none of us want to forget. And he is allowing himself to be sad as well, which is important. If he bottled it up all the time I would worry more. Whilst he doesn’t do a lot of bawling in front of people, I certainly know the value of a good wail to bring down your stress levels a bit, and I hope he does too. Most of the time though, he and Jackie’s sister try to find the fun in life and gee each other up, and just occasionally they shout out, “Oh, GET OVER IT!! :D”

    “We look for love, no time for tears
    Wasted water’s all that is
    and it don’t make no flowers grow
    Good things might come to those who wait,
    not for those who wait too late
    We’ve got to go for all we know”

    Lyrics from “Just the two of us” – Bill Withers – played at Jackie’s funeral

    Guy and Jackie got married on 26th May 2012. It was his second proposal, the first one on a beautiful bridge in Paris hadn’t elicited the same response because Jackie had thought it daft… but they’d been devoted to each other nevertheless. Jackie was Guy’s person for 23 years, they’d had an absolute ball together and it was rare that they were apart. The fact that they got married on the morning of the day she died is yet another indication of their strength, love, and their insistence in getting every last ounce of fun and life out of their universe.

    Grief is a part of anyone’s story, but hopefully for most of us, the majority of our lives can still be remembered with happiness and laughter and that’s the bit we should focus on if we can.

    So if you’re thinking that you don’t make the most out of your life and you aren’t enjoying yourself, remember that happiness is not a thing someone else gives you, or you get by waiting for it, it’s a thing you embody because you decide to live your life that way. For some people, that may require some extra help – so the best thing to do is ask for that help. Happiness is infectious. You can spread it by noticing the good stuff in life and telling other people about it. You find it when you remember everyone you love. You can make it grow by making the most of the people who are still here to enjoy life with you. And now is a very good time to start.

    Remembering Jacqueline Anne Rose
    16th December 1961 – 26th May 2012

    Grief is a freight train,
    no, what’s a little pain
    when you’ve got so much to love?
    Grief is a freight train,
    no, what’s a little pain
    when you’ve got so much to love?

    Forever is a slow dream
    oh what a vivid thing,
    when you’ve got so much to lose.
    Hope is a fast car,
    only takes you so far
    well, you’ve got a lot to learn.

    Close your eyes…
    Take to the sky like a big blue kite;
    leave your woes behind.
    Close my eyes…
    Try to remember what you said to me,
    before you said goodbye.

    Love is a slow song,
    playing on the radio,
    I know every word by heart.
    Happiness is soft light
    that way we see our lives by
    only fading to the dark.

    Close your eyes.
    Take to the sky like a big blue kite;
    leave your words behind.
    Close my eyes.
    Try to remember what you said to me,
    before you said goodbye.

    Lyrics to “Freight Train” by Sara Jackson-Holman