Wonky boobs…

(some thoughts about my breast cancer diagnosis and mastectomy)

I have probably always had wonky boobs – I guess we all do – but they have been more obviously wonky since my breast cancer surgeries in June and July 2020.

May 2020:

When I was diagnosed, during the first lockdown, I went into ‘doing’ mode, doing everything and learning everything to get me out the other side of this cancer experience as fast as possible. I didn’t (allow myself to) feel any emotions about it at the time, because I didn’t want the emotions to get in the way of my recovery.

In hindsight, I realise that it is obviously an extremely emotional thing to go through, possibly even worse to go through alone (& in isolation for 20 weeks), and of course I eventually reached a point where trying to hold all the emotions in check was causing me pain and harm.

November 2022

After having a meltdown when I went for my second follow-up mammogram last year, one of the nurses asked me what was happening for me, and out it all poured, along with all the snot and tears! As a result of that conversation, she referred me to an oncology counsellor and also referred me back to my surgeon to review my reconstruction surgery, and so began the first stage of allowing myself to heal.

I’m not all the way there yet, and I still don’t know why I’m finding it so hard to get through this, but I’m gradually starting to feel like I’m making progress.

The emotional stuff:

The counselling has helped me to feel less traumatised and to process my feelings around my breast cancer diagnosis. The thing that keeps cropping up is a feeling that it was my fault – that I should have done things differently so that I didn’t develop cancer. No matter how much I know on an intellectual level that I didn’t cause my cancer, or let it in, I have struggled with changing the story in my head.

My expectation for myself has always been that I should be invincible and it’s a tough narrative to change! A few weeks ago week my counsellor suggested that I could try using ‘I wish…’ in place of ‘I should…’ so I’m giving that a try and it really helps. As an indication of how far I have progressed, I have ‘written’ versions of this post in my head many times, but it has taken until today to be able to formulate my thoughts and actually write them down. I still don’t know if I’m saying what I meant to say, but it feels like a positive step to be writing anything down so I’ll run with it…

The physical stuff:

The other part of dealing with what’s left after mastectomy, the physical stuff, will take longer but I have started that process this week too.

I had an immediate implant reconstruction after my mastectomy (the only option at the time due to the lockdown), but it is deemed to have failed. They consider two criteria – comfort and symmetry in clothing & sadly mine fails on both! If it was comfortable, I don’t think I would care so much about how it looks, but it is so uncomfortable and that makes me feel really sad about my body. I feel damaged, and I don’t want to feel that way.

The surgery-revision process is a bit convoluted because my surgeon referred me to a different hospital, who are now referring me back to him, and even then I might get referred back! I just want to sit in a room with someone who can give me all my options so that I can make an informed decision, but different people do different things and can only speak about what they can offer.

I truly think it is amazing that there is a choice of surgical options to recreate a missing breast, but none of them feel right for me, and none of us know how any of these things will feel until we’ve taken a huge leap of faith and picked one and had changes made to our body. I don’t want to be flat on one side of my chest but I don’t want to have my tummy cut open either. I think I want to have my other breast removed and be flat on both sides, because it will at least leave me symmetrical, but obviously it’s a huge decision. And I’m exhausted from thinking about it and worrying that I might make the wrong choice. Perhaps it sounds like I’m whinging too much – maybe I am – but I feel how I feel. I know I am lucky to only be worrying about a surgical revision, and not be facing further cancer treatment. But I also know that I can feel lucky and sad both at the same time.

It honestly doesn’t help when a male surgeon repeatedly tells me that lots of women pay to have tummy tuck (which is one of the reconstruction options) as if I should be grateful to be having it for free! He also said that as a woman who has had three children, I probably need one anyway! I don’t, as it happens, and he hadn’t even examined me at this point in the consultation.

And of course there is absolutely nothing wrong with anyone having a tummy tuck, if they want/choose/need one, but I don’t want (or need) one and it feels like such a massive surgery to go through just to pretend that I still have two boobs. And maybe it is still the right thing to do, in spite of how I feel, because it will give me a shape that feels better…

It feels like such a male-dominated conversation, which is weird given that men don’t even have boobs to start with?! I’m definitely going to seek out a female surgeon for my next conversation, because however technically brilliant a male surgeon might be, he can never know what it feels like to have or lose a breast. And the losing part is brutal & and carving up another part of my body doesn’t change that.

On a positive note, the surgeon I saw this week has referred me to a more specialised psychotherapist and maybe that will help me to get my head in a better place so that I am better able to make a decision about further surgery. I hope so!

Moving forwards:

So this week everything has felt really stirred up, like I’m almost back to the beginning (minus the cancer of course, for which I’m incredibly grateful, always). I want to have never been in this place and I want it to be behind me, over and done with, sorted, and not affecting my life in any way…but it doesn’t work that way, and I’m finding it tough.

But also this week, lots of people have listened to me, hugged me, let me cry, and given me space to work through some really big feels and I am so grateful to all of them. I strive to be better at holding it in when I’m working, but for all the times that it has spilled over in the past, and for all the times it spills over in the future, I’m sorry and thank you so much for being there.

As for the wonky boobs, I don’t know yet what the answer is, or when anything will happen, so until anything changes, I’m just going to try not to hate them too much and keep working on the stories in my head.

A final thought:

And one final thought, which is not about me or even specifically about breast cancer.

If you know someone who is going through anything which is big and scary and life-changing, please be open to asking/talking to them about how they feel. Sometimes the hardest thing is trying to hold all the feelings inside because you think everyone expects you to have moved on, or needing to talk about it but feeling bad that you might make them feel uncomfortable.

If you ask and they don’t want to talk, they’ll let you know, but maybe they really need to have you listen.

John Roedel says it better than me:

& last but not least:

Have a look here if you want to know more about breast cancer, including causes, symptoms, screening & treatment.

And please don’t forget to check your boobs!

Self-care strategies for easeful movement

Here’s a round-up of short videos I have created during 2022 to give you some easy self-care ‘homework’ to use between massage treatments.

I hope you find something useful for your body!

As always, please ask if you are unsure whether a particular move is right for you; go gently and pay close attention to any feedback from your body (ie. nothing needs to feel painful to be doing you some good!)

Neck & shoulders:

Hips & Legs:

hamstring stretch with a band

Feet & ankles:

Whole body:

Wishing you an easeful start to 2023:

Remember, ‘little + often’ is most likely going to be a more effective formula than ‘lots x once + never again’!

Would your body benefit from seeing a Women’s Health Physio?

Spoiler alert: the answer is probably ‘yes’!

I wrote about this in my newsletter last week and decided to share it here too, just to help spread the message as far as I can.

I hadn’t originally planned to share this because it feels a bit personal, but I am so astounded at the changes that I couldn’t not share my recent experience seeing a fabulous Women’s Health Physiotherapist. In two sessions I feel like a different person – or more like me – and so much better connected in my body.

I knew I was holding on to tension/trauma in my body (nothing overly dramatic but childbirth x 3, surgery x 2, bereavement, giving CPR to someone in the street, general life-stuff) but I didn’t realise the impact it was having. I honestly thought I could get away with it, so long as I just kept on holding all that shit together! Turns out that I’m human after all and now that I can physically feel how much better it is to let it out, I’m on a mission to do more of that and to spread the word!!

breathe

A bit of background:

In the summer of 2020 I had two surgeries for breast cancer. The first one was a lumpectomy and removal of two lymph nodes in my armpit. I was cautiously back at work a week later, waiting to get the ‘all-clear’ and start the next stage of my treatment. I then found out that the first procedure had not been a complete success so I underwent a mastectomy with implant reconstruction four weeks later. This surgery was successful but of course it had a massive impact on my body, not least in terms of how I felt about myself.

Since 2020 I have also experienced a couple of bouts of severe back pain and associated muscle spasm, the most recent one about six or seven weeks ago.

In an attempt to cover all bases with regards my on-going low back & coccyx pain, I decided to see a Women’s Health Physiotherapist in case there was tightness/restriction in my pelvic floor which was contributing to the problem. And also to check that I am using my 56-yr-old pelvic floor muscles effectively (happily I am – gold star for me!)

What is a Women’s Health Physiotherapist?

I saw Jenny Gillespie (based near Tunbridge Wells) for a women’s health assessment. She is a chartered physiotherapist, specialising originally in musculoskeletal work and now in women’s health physiotherapy, offering holistic assessment and management to women of all ages with symptoms of pelvic floor dysfunction and musculoskeletal pain.

I was pretty nervous before my first appointment, not really knowing what to expect. I actually almost didn’t go, but I’m so glad I did. 

Jenny started by taking some details of why I was there – my back pain issues, breast cancer treatment and childbirth history, most of which was quite emotional for me to share, but she put me at ease very quickly and suggested a treatment plan.

hydrate

What does a treatment involve?

I can only tell you about my experience and what my sessions have involved. We are all different and treatments will be bespoke, but hopefully this will help to give you an insight & dispel any concerns you might have.

Jenny started off by working over my breast cancer scars and surrounding areas which felt very restricted and were causing me considerable discomfort. She is literally the first person to see my scars so that was pretty emotional, but having some release work done was fantastic. Even after one session, the difference was astonishing; and after the second session today I have much more symmetry and much more comfortable movement in the shoulder and across my ribs.

She then worked over my abdomen for some visceral release. She found & released loads of areas where I didn’t even know I was holding tension. After the first session my abdomen was a totally different shape (much flatter – nice!) and much more responsive to exercise, whereas it had been ‘gripping’ ever since my surgeries. In the second session Jenny did even more work over this area of the body and it feels so much more comfortable.

The final part of the treatment was the part I had been not looking forward to – the internal assessment and scar/trigger point release work. Trust me when I say it was WAY less invasive than having a cervical smear test. My upper body was clothed and my lower body was covered with couch roll (paper tissue). There was no speculum, no bright lights & no peering inside my body!!

Every woman’s experience will be different but for me there was some internal scar release work required, which was weirdly incredible! As Jenny worked over internal trigger points I could feel areas of my hips, legs and back letting go of familiar uncomfortable holding patterns. It’s very hard to describe the sensation but nothing in either session has felt painful, intrusive, embarrassing or even unpleasant.

While Jenny was working on my body I felt very safe, respected and nurtured. I felt ‘seen’ as a whole person, like she had understood fully why I was there and what my body needed.

How does it feel afterwards?

Obviously this is going to vary from one woman to the next.

Jenny warned me that I would probably feel exhausted after the first session, and she was not wrong!! I cried a lot on the way home and afterwards (and the next day) but I know that I hold lots of emotion about my childbirth experiences (never mind all the other stuff I’ve been lugging around for years!!) so it actually felt good that some of that had been disturbed. The next morning my body felt different – almost disconnected while things settle into new movement patterns – but also much more ‘easeful’, a bit calmer, less tense.

In the week since, I have noticed

  • less hip/buttock pain when sitting & walking,
  • less gripping in my abdomen when exercising,
  • an easier/deeper/fuller/more effortless breathing pattern
  • a much better connection to and awareness of my pelvic floor – like it was asleep and it’s not any more
  • a change in how my reconstructed boob sits over my ribs, now much better aligned to the natural side

Also I’ve been making much better food choices over the past week because I feel so much better about myself.

nutrition

And I feel really proud of myself for doing something that I had previously not felt brave enough to do.

Is it for you?

I’m going to stick my neck out and say that every woman needs this!

If you have a vagina, regardless of whether or not you have had children (or how you birthed your children), and you have any low back/hip pain, any pelvic floor issues or any prolapse concerns, do yourself a favour and book an appointment. If you’re not sure if you need to book an appointment, I would say, do it anyway! You won’t regret it.

Also if you’re a man reading this and you know someone that fits into the criteria above, get them to book an appointment –  they will be very grateful. I should also mention that men’s health physiotherapy is also available if you need it for yourself.

I have known for a long time through my professional networks that seeing a WHP is a good idea for all women, but I didn’t know it through my own experience until now. My oldest child is 33 this year which means that I have been carrying some of my internal scars for that long.

Oh how I wish I had done this sooner, which is why I’m telling you in the hope that you will do it soon too…

Where to get help

If you would like further information or would like to find a women’s health physio in your area you can find out more here:

I booked my WHP privately but there is support via the NHS for certain conditions.