My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

Unprepared

12 Comments

I thought when it was over, it would be over.  That life would go back to normal and slowly I would forget about the nightmare I have lived for the last eleven months.  I didn’t realize that is not the way it goes.  No one told me that when you book a trip to Cancerland, you stay for a very long time.  No one told me that it keeps going.

I remember early on in treatment I learned about the term “late effects.”  I was mortified and frightened by the thought.  “There are lasting effects of chemo?  That can last for months, years, a lifetime?”  Ken and I asked about this at one of our appointments.  I don’t remember exactly what we were told but there was a “we’ll take it as it comes” approach.  And with that, we didn’t get much more information than what was on the internet.

In many ways I am lucky.  At only three months post chemo and two months post radiation, I’m feeling pretty good.  I have a lot of energy, my chemo brain is mostly gone (I still forget things here and there like names or details of things I need to do), I don’t have any heart problems or nerve damage.  I’m lucky.  I’m so, so lucky.

But I am still having problems with my arm.  The cording is persistent and will not go away.  New ones have formed in my hand and fingers.  The swelling is getting worse, too.  My physical therapist still has not diagnosed me with lymphedema but it hasn’t been ruled out either.  Cording (or Axillary Web Syndrome) can cause swelling and she said my cords are stubborn and moody.  They could be causing the swelling.  But after weeks without answers I’m getting nervous and anxious.  What if it is lymphedema?  What will my life be like?

I already have been given a compression sleeve and glove.  I hate it.  It’s ugly and uncomfortable.  Will I have to wear it the rest of my life?  What about lymphatic massage?  It’s time consuming.  Will I have to find time every day to do it?

Why did no one tell me about this?  I only found out about lymphedema through my own research.  It was never mentioned to me.  And when I asked about it, it wasn’t a major concern.  But I was concerned.  I was given a pamphlet to read.  That’s it.  And now here we are.

I have been caught off guard by the fact that, almost a year later, I am still having health problems.  I was not prepared for the fact that when I had cancer, I felt great and now that the cancer is gone I have medical issues, possibly life long ones.  I’ve been taking it really hard.  I cry every day.  I’m irritable and I take it out on the people closest to me.  Most of all, I’m scared.  If this is happening to me now, what’s next?  What’s in store for me?  Will I be able to keep standing up to the challenges that I will have to face?  I’m being broken down.  Beaten down.

I don’t want to do this anymore.  I want to leave Cancerland.

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12 thoughts on “Unprepared

  1. I appreciate your honesty. I wish I had something wise or wonderful to say or some way to make it better or easier, but instead all I can say is that I’m sending you good thoughts and hugs and, if someone would an invent a way to teleport things, some of my ice cream (because today’s certainly an ice cream kind of day).

  2. I’m so sorry to see you’re going through this.

    For some of us, that’s how it goes. You might want to see a rheumatologist if you’re experiencing any unusual muscle pain, especially noticeable if you press your fingertips into muscles, or fatigue – you say your energy is good at the moment, so was mine until about 4-6 months post chemo and radio – because the treatments may MAY have pushed you into fibromyalgia. They do to a lot of us. Early treatment of fibro is way more successful than late treatment.

    No-one told me about lymphoedema either. I knew because my Mum, who had breast cancer 18 months before me, told me about it. When I screamed at them “Why didn’t you TELL ME???” they spouted some shit about Gradual Disclosure, about not ever telling any of us the whole story for fear of scaring us. I was furious, just like you.

    You should know though, that even though the risk of developing lymphoedema stays with us forever once we’ve had axillary clearance surgery, with every passing year that you DON’T develop it fully, the risk gets smaller. We make sure that we have a stock of systemic and topical antibiotics at home so I can immediately self-treat if I get so much as a scratch, and that my GP knows I will need immediate anti b’s if I present at the surgery with any damage to my left arm. It’s also writ large on all my hospital and other medical notes that no-one can use my lymphoedema risk arm for so much as taking blood pressure, and certainly not for taking blood. You must make sure everyone you are ever likely to come in contact with is fully aware that your lymphoedema arm must NOT be used for anything. Nothing. Get one of those Medic Alert bracelets or pendants and make sure it’s listed in that. Protect yourself.

    One thing I found helpful on the occasions that mine swelled up was to sit there with that arm as high up in the air as I could keep it. Range of movement, if yours is still restricted post surgery, does come back after a few months, but you do have to keep pushing it to be able to get it up past your ear like you could do pre-surgery.

    I’m 7 years out of chemo and radio, and I already unknowingly had fibromyalgia before the treatments. That was made much much worse by the treatments. Like you, I am more ill post cancer than I was with the cancer, which is just so wrong, and so frustrating. I watched dozens of others hop up from their chemo chairs and pop back to work for the afternoon, whilst I struggled to even sit in the chair and couldn’t do any work at all. I think this happens to more of us than medicine cares to acknowledge, because it’s all about insisting how marvellous these “life-saving drugs” are. I don’t mean to sound ungrateful, because I’m grateful to still be here, but I’m now disabled and haven’t been able to return to any work (acting, training horses, nutritional consultancy) or finish the final year of my BA/BSc joint degree. It sucks. I’m not “grateful” for that. I’m furious, and massively upset and depressed about it. No-one warned me, either.

    Good luck with staving off the lymphoedema – not everyone develops it, and if you’re careful with that arm for the next few years, there’s a very very good chance you won’t develop it at all 🙂 If you hate the compression sleeve (who doesn’t?) try the arm-in-the-air thing if you swell up. Make sure you have enough anti b’s at home so if you get a scratch, graze, split, bite, whatever to that arm, you can self-treat out of hours. As a bare minimum, keep a bottle of tea tree oil at home. Keep from putting undue strain on that hand and arm, lift everything with your other arm when you can. I know it’s hard with a child, but you must. The riskiest injuries, by the way, are cuts, splits and scratches, burns etc to your fingers or down the sides of your nails. Wear gloves when possible.

    I know it’s no consolation to know that some people suffer even worse consequences of the treatments than you’re currently experiencing, so I won’t go there 🙂 Just know you have my sympathy, because I do know what a shock it is to find that the people you trusted to do their best for you turn out to have witheld vital information from you, if not actively lied to you about the possible consequences. They claim that those of us who don’t bounce back from chemo et al are “very unusual”. That’s another lie; there are millions of us.

    I hope you get through the lymphoedema threat stage successfully. Despite my many consequences of chemo etc, it’s 8 years this August since my surgery, and I still haven’t yet developed it, so that’s encouraging. My arm has swelled up several times, I’ve determinedly thrust it in the air and eventually it’s reduced again. I fight off any medic who approaches that arm with blood pressure cuffs or needles, and refused two lots of surgery they wanted to perform on that shoulder. Some medics are ignorant of lymphoedema. Any damage to my arm or hand immediately gets anti biotics. I use a topical lotion called Zineryt, a mixture of zinc and erythromycin, direct on any wounds, and take a broad spectrum oral anti biotic, too. You still have some lymph nodes in the rest of your arm, even if they removed every last one from your arm pit, so you aren’t completely vulnerable. As for the lymph massage, I’m sure that self-massage, with your arm up and working from wrist to arm pit using your other hand, will be at least helpful in getting fluid to drain back properly.

    I’m here if you need to ask me anything.

    Good luck,

    L. X

    • In many ways, I get “Gradual Disclosure.” You don’t want to start imagining and creating symptoms that don’t really exist. But when it comes to things like lymphedema, which is a permanent condition, it makes no sense to me. I know that you can do all the right things like stretching and such and still get it but why all women who have had an axillary lymph node dissection don’t go straight to physical therapy is a big question for me.
      Like I said, I’m lucky in so many ways. I can still work, I’m working out, I can raise my child…but all the little things (and the big ones) add up.
      I’m sorry about your other condition, fibromyalsia. I honestly know very little about it but what I am learning from you, it sounds really terrible. I’m not sure why we are dealt the cards we are given. There’s no answer and no rhyme or reason. I wish there was. I wish there were answers.
      Anyway, thank you for your comments and information. I really appreciate it and hope you are doing well.

      • Thanks, Carrie. Yeah, I understand gradual disclosure, but not when it comes to something as permanent as lymphoedema, and definitely not when I asked direct questions and was actively lied to – I don’t care if they thought they were protecting me, if I ask a straight question, I expect a straight answer! If I ask, it means I want to know!

        Over here, I WAS put straight into physio to get that arm to have full ROM again – did they not offer that to you? Have you got any exercises to do? They hurt like a you know what but are well worth it. Lots online if you need any.

        My underarm blew up like a grapefruit just out of hospital, but I’d had a simultaneous lat dorsi recon, and they put it down to that. We went to the ER, but got sent home again 🙂

        I do hope you stay clear of it – and remember, one incidence of swelling doth not lympoedema make! You may yet avoid that horrible compression sleeve.

        Thanks for your kind words. Keep recovering,

        L. X

      • No, here we are not put into PT unless there’s a problem. So, I now have a problem and am in PT. I bet I could have faked a problem and gotten it earlier. Hindsight…
        I don’t get reconstruction until late fall/early winter. I’m getting implants. I don’t want another major surgery and I need to be able to lift Oliver, something I can’t do with the other kind of reconstruction.

      • That they only do PT once there’s a problem is insane….you said implantS – does that mean you’ve had a double mastectomy? And you’re right, the muscle/fat plus implant option means no movement for a minimum of 6 weeks (mine audibly ripped when I pulled the curtains closed with my OTHER arm about 5 weeks after) but really they actually mean more like 6 months. I couldn’t even bend at the waist to clean my teeth. I had to sleep upright for the first 6 weeks too, because the wound in my back was too painful to lie on.
        I don’t envy you the tissue expansion thing…..I think I was lucky to have had my dx when I did, because I hear that they now won’t do simultaneous recon. With my history of chemical intolerances and severe bad reactions, they wanted to minimise the number of times I was under general anaesthetic anyway, but simultaneous recons were common in 2007. Not now.
        At least by fall the weather will be less hot and sticky, not much consolation, but you’ll be more comfortable without the summer heat!

        Will you be able to lift Oliver almost immediately after your implants op?

      • No, I only had a mastectomy on my right breast. The last time I spoke to the plastic surgeon was before my mastectomy so I don’t remember a lot of the details. I probably won’t be able to lift Oliver right away but hopefully soon after. And I’m in PT now so hopefully that helps the healing. I’m sure the cooler weather is will be more comfortable but I’m ready to have this horrible thing out of my body, no doubt about it.

      • I can understand that. Beats me why they aren’t apparently doing simultaneous recons anymore – are they available where you are, or were there reasons why you couldn’t have it done that way round? It must be hideous having your skin gradually stretched by an device – it was bad enough when I had a PICC line permanently attached to me from chemo session 2 onwards because my veins closed up, and the cyclizine pump that was attached via a massive needle embedded in my stomach for the duration, but I can only imagine what it must be like in your situation. Forgive me if you’ve already told me, but when exactly are you due to have the expander out and the implant put in? Did you say Fall?

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  4. Carrie, I relate to your frustrations. I too asked a lot of questions to my Onco regarding late effects from cancer treatments and she stated the same thing, “we take it as it comes.” I particularly remember being very paranoid about Taxol in relationship to leukemia, another major side effect. She said, “we will deal with the leukemia when it comes.” Her response made me feel more nervous. In a way, I think it’s best not to be too overwhelmed with information as more often than not, we don’t experience that many problems. The biggest problem I’ve encountered after cancer has been my mental health– like you, I thought this experience would be over after treatments were done.

    I really think Oncologists are trained to just keep us alive and to focus only on the cancer. They are not too preoccupied about the “secondary effects.” Often I am been sent to other specialists outside of Sloan to treat all my issues: bone/joint pains, back pains, skin changes, etc. They are an excellent hospital, but if it isn’t cancer, they don’t want to deal with it.

    I am sorry you are dealing with this unresolved issue with your arm. Yesterday I came across an article, not sure how helpful it would be to you but here it is: http://breastcanceryogablog.com/2015/07/02/how-to-manage-breast-cancer-related-lymphedema-with-yoga/. Not sure if acupuncture would be helpful to you besides the PT.

    I hope this isn’t a permanent problem for you. I hate that we don’t have better treatments to treat our disease.

    Feel better soon.

    • Thanks, Rebecca! I just came across that blog the other day too and I’m going to try a few things out.
      It’s interesting…cancer care is really only about the cancer and rarely about the whole person. I find that very confusing and backwards. I’m not saying that the other issues are totally ignored but they aren’t given as much weight as the cancer, which I get but I don’t.
      The next step in my treatment is my mental health, for sure. I think I’m experiencing a bit of trauma from this past year and it’s time to deal with that.

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