Rads round-up

I saw my neighbour the other day and he asked where I was off to so bright and early. “Radiotherapy,” I replied. He looked surprised, then stuttered out that he thought I was all finished. A few other people have said similar things. I guess this part of my treatment is a bit eclipsed by the ‘ALL CLEAR’ news. We’re all ready to move on but there’s just one more bit to do. Radiotherapy is the black sheep of cancer treatment, coming in at the end of the party, getting too drunk and vomiting on the birthday girl.

Part of the reason people aren’t in the know is because I haven’t been writing about it. Facebook is still a no-go for me to express most things cancery. I’m up for glib outlooks on serious and scary issues but Facebook takes it just one step too far and I really can’t handle emoticon-based comments on pictures of my radiation burns. I did, however, get the fire in the my belly to come to bosom buds last night, a much more appropriate and grown up place for existential crises.

radsboobs

This is the least offensive photo idea I could come up with to show you my burns. The left side is my untreated left boob and the right side is bad boob. This is actually the worst it has been so I think I got off lightly compared to other folks. There were some photos circulated on Facebook just before I went in for treatment of a woman who was very cross with the sexualisation of breast cancer by some awareness campaigns. She wanted to highlight the grim reality of radiotherapy and I salute her contribution to the debate. For me personally though, it was entirely bad timing. As I lay there, strapped into my boob mould on the treatment table, I started to have panic attacks. I mentioned it to one of the radiographers and she reassured me that the women pictured had had double the treatments I would. She also had the older model of treatment which involves excessive treatments, perhaps because of a lack of change in the US healthcare system or because doctors are paid per treatment there.

My skin has held together and I’ve had no blistering. Phew. I’ve been using various creams in the campaign to save my skin. The main one is Lilah’s old nappy cream. I told the radiographers this and they were extremely skeptical. There was a lot of raising of eyebrows and dubious tones of voice. When you’re lying half-naked, pinned and unable to move, that kind of reaction to your carefully laid plans really sucks. I tried to relieve the tension by telling them “Don’t worry, it’s all natural. It’s planted by virgin fairies in holes dug by unicorns under the full moon.” Pause for laughs.. nothing. All they wanted to know was did it contain metals. They weren’t impressed by comedic folklore/industrial mash-ups.

I went home deflated, a bit cross and did my research. All it contains is almond oil, chamomile and calendula and no metals. A week later, no blisters, and they were eating humble pie. They even admitted “What do we know anyway?” They were just looking out for me so I wasn’t too annoyed and I’m all up for the ‘show me the proof’ approach. It’s just rough dealing with people’s serious faces when you’re feeling vulnerable and tiredness is making you weep randomly.

That segues nicely into the fatigue. This is tiredness like I’ve never known and I’ve had ME. I hit ‘the wall’ around 5pm. But I’m basically exhausted all day. We went on a day trip to Camber Sands on Monday and although I didn’t do much walking, the hour and a half drive finished me off. With that level of tiredness comes a lack of ability to problem solve, make decisions of any kind and be patient with humans. Especially small humans. I have had to remove myself from interacting with Lilah at these times and that’s starting to hurt both of us.

I’ve also started to worry lately because I’ve been having this sense of dissociation. I feel like I’m watching a movie of my life and things seem unreal. This can be a coping mechanism and is quite common as a part of a PTSD reaction in cancer patients. I’ve thought about doing mindfulness stuff to help reconnect the old mind-body up. But who wants to be in their bodies when their bodies feel like crap? I thought about going to the allotment, digging my hands in soil, forcing the physicality. Except I’m too tired to go. But getting a good nights sleep does help. Writing here is helping, realising this is all perfectly normal and knowing it will end soon.

Other things have been happening though. I’ve had another ECG to make sure the Herceptin isn’t going to stop my heart. Lilah came along and she was totally mesmerised seeing my heart beating.

I haven’t had the results yet but I’m assuming that the technician would have freaked out if he’d seen anything catastrophic. Although he was one of the least chatty technicians I’ve had and couldn’t even be persuaded to interact by appealing to our in-depth knowledge of his home country, the USA. He was very discreet though and encouraged me not to flash my boobs at him by showing me how to hold the gown just-so. This made me feel very strange about the last technician I had who insisted on lying over me to reach the other boob, thus crushing my body between his and the outstretched arm. Hm, I’m giving the benefit of the doubt that there was a very good technical reason for this kind of intimacy.

Today is the start of the last five sessions of radiotherapy. These are boosters, commonly given to young people with aggressive cancers like mine. They will be focusing the X-rays on the specific place where the tumour was and not treating the whole boob. I’ll be all finished next Tuesday. I will still have pain for the next six months. I get shooting pains in the scar tissue that make me involuntarily moan and/or suck my breath in. The tiredness could take years to dissipate. The radiographer who reviewed my treatment told me this next period of transition could be “tricky”. Once all the treatments stop, the medical support goes too. When you’re all “better”, the rest of your support system gets back to their own lives. He offered me psychological services with only a waiting list of a couple of weeks. I may take it.

8 thoughts on “Rads round-up

  1. Paula

    Hi darling,
    I find it somehow poetic that you are showing us your heart. It’s a mesmerizing image.
    I would go for all the support you can get. This is a situation you will be in for a long time, and no one else will be able to see it and will just assume you’re doing well. And you probably are, given the circumstances, but inside you will still be dealing with what you have been through and still need to go through. Besides the more bodily aspects, emotions have a huge impact on our recovery and if there is someone who can help you relate to your situation in an insightful way, I think you probably would get a lot from it.
    I am sending you my love and hoping that you will feel lighter and with more energy soon again,
    Your P

  2. Sokari

    Paula makes a good point. The all clear assumes you are OK and thats it but for you, Lilah and Adam there is still a long way to go. Once the radiotherapy is over the healing process can begin and I want to be honest with you it will be slow at first with highs and lows when what you have been through and survived rushes through your mind. We may not realize the trauma to our physical and mental selves so I hope you will be able to rest for the next year or so and prioritise your wellness. It might even take 2/3 years before you feel your old self again but the thing is to know that you need healing and the healing period will have its ups and down. Sending you love and strength dear Heidi.

  3. Karen

    I think Sokari and Paula’s responses are amazing and they say everything I was thinking too about this. It’s so hard for any of us to fully understand what our friends are going though in any particular life situation, and we all really want to believe that we’re all doing fine. But I think the truth of something like cancer, or any other serious illness or traumatic life event, is that there is a very significant post-traumatic effect on confidence and optimism about life etc. I think when we’re in crisis, we are forging on, adrenaline-fuelled and determined – then once the crisis is past, we have to deal with the psychological aspects of what has happened to us. Thank you very much for your eloquent and honest post, it really helps me understand what you are going through and I am so glad that we have this way of hearing your thoughts about these changing feelings you are having. Let’s keep talking about it.
    Sending you lots and lots of love. xxxxxxx

  4. Heidi

    Thanks wonderfully wise women. You’ve helped me so much and I shall keep talking. I just got back from booster no. 1 and it was a long old wait. The machines seem to keep breaking down which is slightly disconcerting. But there’s a great WWII spirit with the BC ladies in the waiting room. Hooray for humans. X

  5. Lisa

    Paula, Sokari and Karen summed up what I would have said, so I’ll just add a small piece of advice that a friend and fellow survivor said to me: don’t worry about seeking out the feelings, they’ll find you. And she’s right. The nurse navigator who has guided me through treatment reminded me that cancer treatment is traumatic (that part I could figure out), and there’s a PTSD of sorts that we experience afterwards. I really didn’t understand until after a routine blood draw recently which left me crying and reliving all those chemotherapy needles. Perhaps a good way to approach the post-active treatment part of this experience is to think of it as sort of a grieving process, by which I mean we can rationally know that we’ll be feeling emotional ups and downs but it’s difficult to predict when those feelings will emerge. Like you, talking a lot about cancer treatment on FB isn’t appealing to me (aside from the occasional post0. But talking about it to key people is important – whether you talk to a counselor or friend or someone else, just talk.

    Also: good job re the nappy cream! The most important thing is to minimize the burnies, and it sounds like you’re doing that well.

  6. Heidi

    Ah Lisa, thank for that insightful comment. Very interesting that the PTSD thing is certainly very common. I really thought I was processing well but it seems after surgery things got a little backed up. All these medical assaults on our bodies are akin to being shot at in an armed conflict! It also felt like my coping strategies that worked during chemo didn’t cut it for post-surgery and now for rads. Interesting that you reacted to the needles. I haven’t found that so much but more reaction to smells. The anti-bacterial soap dispenser had to be chucked because it was making me gag every time I used it. I guess there’s some association made in the brain and it’s those connections we need to work on. Although I did almost burst into tears on the rads table today.

    I have been torn though because there’s parts of this traumatic experience that I want to hang on to. Lessons I’ve learned that bring me deeper contentment like letting go of small things, being in the moment, being at peace with death.. So I don’t wanna wipe away those things as a package deal with therapising this experience. I don’t want to necessarily return to my life and thinking as it was pre-cancer. I guess even just being aware of that dynamic and writing it here will help it not to happen. A long and complex journey is still ahead!

  7. Lisa

    As with everything else, we deal with medical assaults on our bodies in different ways. I’ve been tremendously impressed with your reaching out to people, using your blog to openly discuss all aspects of your breast cancer treatment. My response has also been to talk, but more one-on-one, because usually in times of crisis I shut down and it was apparent that that was a bad idea this time.

    (If you burst into tears on the rad table, it’s a safe bet you won’t be the first person doing that)

    Needles: I am, unfortunately, needle-phobic. Chemotherapy is a special hell for someone who is needle-phobic. It didn’t make my terror of needles any less, but anticipating the process did help me to have coping strategies in place. It was still awful.

    You’re right that there are parts of this traumatic experience that I want to remember and learn from, and moments of clarity that are important lessons. Unlike you, I’m not at peace with death and still quite irritated at having to live with this diagnosis. Therein lies a lesson, no? A friend is both a reiki and shamanic practitioner and has offered to work with me on the emotional side of recovery. Cheers to you, and I’m so glad Daphne suggested we “meet”!

    1. Heidi

      Yeh I totally agree that everyone has their own strategies and ways of coping. I’m also impressed by you! when you came out on fb, that was an incredibly courageous move. And you’ve been so open and insightful here on the blog too. I really look forward to reading your comments particularly as you ‘get’ it. I too am so happy daphne schmoozed us together 😉 Hooray for us!

      I’ve decided to take up the offer of psychological support. I think there’s definitely a backlog to process. I’ve really benefitted lately from clearing the schedule and rolling with whatever I’m feeling. Time alone with a book has been really helpful, just reducing input so my poor brain can catch a breath.

      The reiki sounds like a good plan. Whatever helps to process this experience. I think accepting death is a continual process for me. I’ve lost my peace a bit since surgery. I think I need to work a bit to get that back. It doesn’t feel like something I’ll resolve and move on from. Perhaps something I’ll just learn to live with. Xxx

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