Survivorship: The Part We Don’t Talk About — But Should

melclarity​ How wonderful to hear from you, tho I am very sorry to read of your recent heart failure and cataract diagnoses  :(   That's a real bummer - and yes, you are WAY to young to have acquired those 'naturally'.  Grrrr

But I am glad that you've adapted & evolved, as we've all had to do in one way or another along the way.   I've had some major challenges in the last 4-5 years but have come out the other end, still with a zest for life & pushing the envelope .....  But you are correct - we don 't talk about 'it' with anyone - as to be totally honest, most of our family & friends (other than those here) really don't want to hear about 'it'.  I almost see the eyes 'roll up' .... So I just shut up! 

I was SO lucky that I didn't need chemo - but I have had a few friends diagnosed with early stage heart failure due to the chemo they received for their BC. And the health professionals KNOW that some WILL 'get it' with specific chemo regimes, but they don't always advise you of that possibility, which is almost medical negligence by omission!  Grrr  Same as the aches & pains from AIs .... they still pooh pooh that idea as having no substance, when we ALL know about that one!

I am one of the lucky 5 in iserbrown​'s little group & find great solace & mate-ship in nattering away offline .... We actually met up last year in Vic when I stayed at an Otis retreat there - meeting up with another BCNA member as well as 2 of my Mending Casts Fly Fishing Retreat BC buddies (from 2023) .....
If you've never heard of them, look them up here (for both men & women with ANY type of cancer.)
They have special BC only groups for women ... and I can recommend the retreats to EVERYONE - whether you have ever (or never) fished before - it doesn't matter.  The organisers & instructors are just amazing & most have had close connections with Cancer (or had it themselves) so know what we are going thru. The  Camaraderie over the 3-4 days is just amazing - and there are no costs involved - all you have to do is get the OK from your GP or Onc - and turn up.  All accommodation, meals &  fly fishing equipment is supplied - as well as basic fly fishing tuition!! You are usually pampered a bit as well in other ways too xx   Do yourself a favour - and look into it.  If you have a buddy who's had BC - see if they'd like to attend as well - tho you very quickly bond with the other women - as they all 'get it'!!

https://www.mendingcasts.org/our-programs

Funny thing - I've just spent the last 2 weeks in WA on a wonderful kayak fishing adventure off the coast of Northern WA and (other than difficulty negotiating metal steps on the pontoon and mothership) I coped remarkably well given my age (73 now - amongst a group of 9, largely in their 50s) - I was one of 2 women, the other being a youthful 50 (Oh how I WISH I was still 50!) ..... Hehe, one of the guys affectionately called me Super Nan for the whole trip!  LOL.  He was SO funny - and he kept an eye on me at the same time, even coming to my aid when my best fish got 'sharked' & I was rather shaken after the shark went under my yak, jolting it badly enough to think I was going to fall in!  I squealed like a child!! 

I had no real aches & pains whilst over there in the WA warmth ... but now that I am back on the east coast .... my hands, hips & knees are KILLING ME again - LOL, I was whinging to myself about it just this morning - specially my HANDS!   Grrrrr.  I am beginning to see the reason why people LOVE living in WA so much!  ;)     

Tri​ I am so pleased to hear of your NED xx.   WOOHOOO xx  I hope you had a quiet (or not so quiet) celebration xx

Afraser​ The mobility thing is a real pain, isn't it.  I don't like doing 'one stair at a time' these days - but often need to do it.  In my mind, I can still 'run up stairs' ... but in reality, I just can't now!   Grrr

Take care ladies ..... keep getting out there, doing the things you love doing, for as long as you can!!   😉 xx

Tri​ so nice to see you here and I thank you for sharing your experience too. Together we are stronger, acknowledging the truth doesn't diminish our gratitude. We are human and our paths whilst similar are all unique to each other. I also believe we make the right decisions for ourselves at the time they are made.

I am so pleased to hear after 3 years you have some good news, winning! I agree that I feel propelled age wise, whilst only 58 am navigating the fact that my physical self has aged more rapidly than someone not been down this road. Acknowledging that helps me realise how fragile we are, and whilst there are some elements of all of this that really hurt to come to terms with. 

So inspite of this new version, I hope you move forward with confidence in how amazing you are. Knowing you are not alone in the thereafter treatment.

I wish you all the best into a healthy and bright tomorrow. 

Melinda

xo

Hellomelclarity​ I appreciate your candour and thank you for how you thoughtfully outlined the benefits but also the legacy impacts for you of the treatment you had. 
Your reflections resonate with me, I am grateful for the positive outcome of this incredible treatment I received - to be here still is a blessing. I reconcile myself to the fact that the side effects are manageable and a necessary trade off. But it doesn’t cover up the fact that there’s changes, I try not to feel troubled by what feels like a sudden lurch towards a more aged version of ourselves. Hair, skin, sight, strength, sure footedness, vigour and stamina were central to my identity, something I took for granted so now - in the blink of an eye- they are not what they used to be, it is still something I need to process! The way I turn myself around is to reflect on how soooo much better I am now, compared to when I was in the thick of treatment. There’s little things: the walks I love on the coast and conversations (now my brain is working better), I can use an electric toothbrush again and my cholesterol and liver function numbers have found their way back to normal! 
I’m 3 years post diagnosis and this week received my annual “no evidence of disease” results (woot!) so I’m happy. 

I confess I have never been too keen on the term survivorship, in relation to cancer. Lots of people do survive, and in the main, because they have had treatment. One could easily apply the word just to life itself - we survive loss, heartache, disappointments and so forth. And sometimes those are experiences that scar and sometimes they are experiences that mould. 

I finished treatment (mastectomy, chemo, herceptin and 10 years of hormonal therapy) with lymphoedema, peripheral neuropathy and an arrhythmia. Mostly these have caused little dificulty, until lately. Exacerbated by a leg injury, I have now got some mobility problems. I am also 14 years older!! And if my experience is anything to go by, one's body simply doesn't bounce back the way it did when I was younger - even when I was in my 60s! 

Before breast cancer, I was accustomed - indeed never thought about it - to be healthy. I was accustomed to a body that did what I wanted. Comments on BCNA have reminded me how many people experience cancer as yet one more bodily malfunction to cope with. And whose remnants of that experience will be much worse than mine. So yes, treatment may come at a cost, but I'd be wary of putting anyone off treatment because of the potential longer term outcomes. At least some of mine are the result of living longer - and possibly one of the most rewarding and interesting periods of my life. 

melclarity​ 

Lovely to read your post, so honest, a reminder that the remnants of treatment remind us what we went through!

Me, leg pain lives on!  Goodness it drives me nuts!

A thoughtful post to allow others to realise, it happens but we are still here!

Take care