"Waiting time for Breast Reconstruction"

In March 2020 I was told that I had stage 2 grade 3, triple positive breast cancer, a diagnosis over the phone because of Covid, a first for my consultant. 

A very aggressive cancer which needed Chemo. I needed Chemo but I was advised that Chemo was paused because of Covid, utterly terrifying, I’m sure you’d agree.

My only option to save my life was surgery first to remove the cancer, but without reconstruction because of Covid. 

The plan - Turn my treatment round about, surgery first and wait ….everyone praying Covid numbers fall to safe enough numbers that Chemo could start again in 6 weeks. 

In April in an empty hospital my surgery took place. Full RHS Mastectomy with lymph node removal. No reconstruction but promises this would be fixed at a later date. 

Thankfully the surgery was successful and Chemo was able to start again in May 2020. I received 6 rounds of chemo, 15 rounds of Radiotherapy, 18 Herceptin injections and 1 year of Neratinib.  All of which I’m very grateful for and the care I received was amazing. 

But still I wait my turn for reconstruction.  I’ve seen my Plastic Surgeon twice in this time and each time I’ve been told I’m good for surgery when, if I ever reach the top of the list. My mastectomy was on in April 2020. Three years and three months waiting for my turn on writing this letter. I’m not sure how the waiting lists  work but I’m only considered to have been waiting since I first saw the plastic surgeon in mid June 2021. Sadly my wait from April 2020 to mid June 2021 because of Covid doesn’t count for some reason. Despite this, I count it, as it’s very real to me.  I went through the surgery back in April 2020, I am the one looking in the mirror each day and I am the one prevented from moving forward. I did not choose any of this and I did not elect to not have reconstruction at the time, that choice was taken from me because of Covid. 

When I first managed to be officially put on a wait list for reconstruction I was told (6 months was the golden number) most people are seen within 6 months. But the goal posts were moved because of Covid.  I saw my consultant in October 2022, over the moon it was finally my turn, only to be told it’s now 104 weeks before you become a priority; a lot of tears were shed. I’m sorry for this. I try very hard to not let it hold me back with most things but when it comes to planning anything like a holiday with my family I feel I can’t just in case I am called for surgery. I phone before we book anything. 

So I finally reached 104 weeks in mid June 2023, still no news. I phoned in last week to ask for an idea when I might have surgery, to be told once you’ve been on the list for 104 weeks. Yep that’s me, might even be 108 weeks now. I’m going to hopefully receive a call back tomorrow.  

I’m not complaining about the people caring for me, they are doing their very best. I’m complaining about who is making the decisions about my future and about the people caring for me for the last three and a half years. Prevented from doing their jobs and providing the care they want to give.  There have been so many barriers throughout my cancer journey and everyone I’ve crossed paths within the NHS have gone above and beyond to try and help make my journey a little easier. But it’s not been easy, it’s been the most surreal moment of my life and sadly in continues…still because Covid. Cancer has been my worry, Covid just added a whole extra layer of stress and anxiety and three and a half years later it continues. 

My hope from my letter, in an ideal world, I finally receive a date for my surgery and it goes ahead. The reality, if someone can call me and give me a realistic timescale of when it might be so at least in the short term myself and my family can plan holidays and just normal day to day life. After going through a cancer diagnosis there is a sense of urgency to live and just do things, not wait. 

I did not elect to have cancer, I did not elect to not have reconstruction, I did not elect for this to happen during a pandemic, I did not elect for any of this, I am young mum desperate to move forward and waiting patiently for it to be my turn.