Back in the waiting room

This week is busy. For the first time in several months I have two hospital appointments in the space of a couple of days. Yesterday’s appointment was the mammogram. Thirteen months have passed since the mammogram that couldn’t find a 2cm lump just 2mm away from breaking through my skin. Eighteen months have elapsed since the regular mammogram that gave the initial false-negative result at the beginning of 2012.  My experience means I have little faith in mammograms; I think I’m still much more likely to detect any future anomalies myself but after so much treatment I hope the eventuality never arises.

I thought I might be apprehensive about yesterday’s hospital visit but I wasn’t. Dispassionate might be a better description of my thoughts and feelings on the subject. I’ve moved beyond the pointless worrying that accompanies any form of diagnostic imaging because it’s wholly futile. Things will either be OK or they won’t. If they’re OK I continue to live a reasonably normal life. If they’re not OK I already know what happens next.  The radiographer told me she couldn’t see anything that looked to be of concern but the formal result will be with Miss M in a few weeks. Waiting is something else I’ve become accustomed to – the result will either be OK or it won’t and whatever it is, I have no power to change it.  This is the reality people who’ve been diagnosed with breast cancer live with for the rest of their lives; the carpet can be pulled from under their feet again at any point in time.  The experience has altered my perception of many things, made me much clearer about how I lead my life and where I spend my time.

Tomorrow is the final blast of herceptin, the wonder drug for people with Her2 positive cancer. Prior to herceptin disease free and overall survival rates for this kind of cancer were some of the worst; few people made it beyond the 5 year follow-up period. Herceptin is a breeze for many but that hasn’t been my experience and no-one can tell me how long the side effects will last or if they’ll completely resolve over time. The joint pain and immobility have been of greatest concern because these side effects impinge on day-to-day life. Weight gain and the inability to lose even a pound when sticking rigidly to 1200 calories a day is frustrating.  Overall though herceptin is a good thing for those whose cancers are Her2 positive, it has proven survival benefits.

3D Dual Colour Super Resolution Microscopy wit...

3D Dual Colour Super Resolution Microscopy with Her2 and Her3 in breast cells, standard dyes: Alexa 488, Alexa 568 LIMON (Photo credit: Wikipedia)

There are a few remnants of what happened last year scattered throughout my body. The scars and fakery are the most obvious as well as my shorter than pixie-cut hair which is still thinner at the front than I’d like. The early menopause that has, as far as I can tell, gone through the hormone deprivation stage and all it entails leaving few after-effects except the future potential for osteoporosis. Two toes on my right foot have subungual haematomas, one is painful the other isn’t, and all of my fingernails have onycholysis (detachment of the nail from the nail bed).  At some point I expect all the affected nails to part company with me but for now they’re hanging on.  An irritable gut that now appears to have a mind of its own irrespective of what I eat, fluid retention and inflexible joints that make me move like a 90-year-old.  Surviving cancer is not without consequences but surviving is still the preferred outcome.

After tomorrow I’ll be in the ultimate waiting room, the one that takes 5 years to get out of.  Hospital visits will be the exception rather than the norm (I hope) during that period, aside from the additional surgeries I’ve elected to have. Shortly the evidence of my skirmish with cancer will be barely noticeable, with luck my stamina and fitness will return to their pre-treatment levels and my clothes will fit again! Being back in the waiting room has no hold over me anymore.  Life is beckoning and I don’t intend to waste it on things I have little opportunity to influence.

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28 thoughts on “Back in the waiting room

  1. This is good news…
    I know we are almost new to each other..
    But get healing…
    Keep on keeping on..

    Shaun x

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    • Thanks Shaun, all I can do now is trust myself to stay well and watch for any signs that might indicate a problem…. Sounds a little passive but that’s really all there is to do. Thanks for your good wishes, it means a lot xoxox

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      • Yeah self maintenance is something we all need to do as we get older (Not old, older, lol)

        And my pleasure x

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  2. Excellent post! I’m sorry about what you suffered with Herceptin. I suffered a lot taking Aromasin, my oncologist’s drug of choice for me. By the way, I have little faith in mammograms, too. My mammogram missed my tumor. It took my own self-exam to discover the damn thing.

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    • Thanks Beth, these drugs are necessary but challenging in so many ways. I will never trust a mammogram and despite some medics saying self exams are unlikely to detect problems it worked for both of us.

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  3. So glad you’ve managed to make it through the Herceptin…and so sorry for what it has done to you. As someone who didn’t escape that horrible side effects and was told that the manufacturer says this happens to something like 0.001 percent of the Herceptin population and that I likely wouldn’t meet someone who has experienced this too, it makes me wonder — are there more of us out there that they aren’t saying anything about, or is it just ‘coincidence’ that we’ve met? Though I’m sure we were fated to meet 🙂 I think Herceptin’s possible side effects have been largely ignored by the manufacturer AND the medical community, It’s not that I could have/would have changed anything, but if I had been told that these effect would be long-term and if I were someone who was not strongly Her2 positive, I may have reconsidered the decision to continue.
    Sorry for the side note there! Thinking of you as you move from waiting room to waiting room, and thanking you for continuing to share your story. Sending hugs across the sea… xo

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    • I’m glad we met Leisha, I wish it was before our shared experience of cancer and drugs and I wish it could last much, much longer. The hand you’ve been dealt is completely unjust and I remain inspired by your eloquence and resolve. Herceptin is much more troublesome than I think we’re told. Another lady in my clinic is now experiencing similar issues, apparently we are the only two in our health authority area but the Internet is full of stories of women who’ve had the same kind of experience. I do wonder sometimes if they tell us the bare essentials because the whole truth would scare too many away! Thinking of you as ever and sending love and friendship xoxox

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  4. Congratulations on reaching the last Herceptin treatment. It was touch and go but you made it! With a little luck you can now look forward to new horizons and join the rest of humanity in Gods waiting room, where everyone waits from the day the are born. Good luck for tomorrow and I hope the side effects remain at a bearable and tollerable level. Love and {{{hugs}}} always. Dad xxx

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    • Thank you Dad, as you know I’m a feisty one so in spite of some pretty dire side effects I wasn’t prepared to let it get the better of me. Like I told dr c, joints are of no use whatsoever when you’re dead and hopefully that now won’t happen to me for some years 🙂 xxx

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  5. Tom Petty had it right, didn’t he? (for all the non TP fans, go to youtube and just search based on “the Waiting”)
    So now it begins. BUT–something else has begun; focusing on that will be much more fun :>)

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  6. Tracy reading this has helped me tremendously. I did not have Herceptin but, the side-effects you mention I know all too well.

    I have not had chemo for three months but my tongue still tingles like it has been burnt with something hot and has a metallic odd taste. I can’t stand any kind of fat, it’s like eating lard. Saliva seems to be nonexistent, food sticks to my teeth despite my best efforts to run my tongue across them to keep them clear of debris. My tongue sticks to the roof of my mouth while I sleep, that is, on the rare occasion when be I’m able to sleep — insomnia has been hell for the last year. I cannot drink enough fluids and it feels like I retain every ounce of it almost as though I’m a water balloon. I’ve sweat more this year than I have my entire athletic career, I feel drenched all the time. Beads of sweat build on my naked forehead causing my skin to look aged and bumpy along with small whiteheads forming beneath the skin.

    I cannot remember names, steps to processes like logging into my computer are forgotten. I’ll begin typing my password before control-alt-delete to get the appropriate window up. Yes, I’ve done this countless times.

    Like you, my diet consist of nothing, mine might be 1000 calories and I’m able to swing 5lbs like it is nothing. My abdomen has been sore for weeks. I constantly feel as though I’m sucking my stomach in but, I think it’s because my ribs ache. I feel toxic, almost explosive.

    My left toe feels like I dropped a sledge hammer on it, this comes and goes any given day. Some days I can press down on the nail and feel nothing, other days I can barely touch it. The neuropathy in my fingers and toes in on going. The numbness and tingling seems to be ever present.

    As for my hair, it is salt and pepper curly and cannot be directionally combed it has a mind of its own.

    This is not me complaining, this is me seeing that I haven’t.

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    • I’ve never seen you as a complaining type Diane, more of a give me the facts and let’s deal with it kind of person. The truth of it is that for both of us and all the other people who’ve been through this ordeal there are a myriad of after effects transforming the way we now live our lives. Even down to the basics like how we can wear our chemically altered hair. The price of developing cancer is a high one and its not just the treatment costs, the impact on work, family and friends, its the long term impact and subtle changes that no-one mentions at the start.

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      • Tracy, not sure why but, your observation of my behavior (give me the facts and let’s deal with it)has lingered with me over the last few days.

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    • I suppose overall it has been a short time but it has felt like an eternity on occasions. Thank you for thinking of me, it’s been all the good wishes that have seen me through 🙂

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  7. When I read your blog am always grateful I am one of those people for whom Herceptin was a “breeze” (well, except for that whole heart damage thing, but I got over that a year later). Wish it were same for you.

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    • Thanks CC, just shows what a complicated thing this is to deal with and how we all end up with different after. Effects from the same kinds of treatment. At least it’s done now and with luck (hope we all have some) we won’t be doing it again

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