Surgery Options and Donations
I talked previously about the mixed emotions that we’ve been having since this all kicked off again; this time I want to talk about determination. If you’ve seen Salesforce’s Trailblazer video, you know it opens with the line “I’m a very determined person.”. The truth is, it’s because I am pretty sure that if I wasn’t, I’d still be sat here right now wondering when things are going to start, instead of mentally preparing for my surgery, which happens in less than a week. It was the same when I was buying our house….I just don’t know how else to do this.
I’ve been waiting for some time for Bluewolf to complete its transfer to IBM. There are many reasons (all work-related), but the other reason is down to medical cover. As an employee of IBM, your medical insurance is Medical History Disregarded. When they told us that during the consultations, I think I was the only one in the room who was excited by that. I’m not currently covered because of my pre-existing history and I cancelled my previous insurance because the premiums were so costly.
Now, I’m beyond excited, because transferring meant the difference between waiting for the broken mess of NHS Hertfordshire to sort out my situation (as my cancer continues to grow) and actually getting shit done.
I’m also incredibly grateful to my friend and Ladies Be Architects co-leader, Charly Prinsloo. We had a “management meeting” the other week, and on the agenda was something about GoFundMe. After we’d caught up on events, prizes, competitions, Dreamforce and various other things, she told me she wanted to set up a GoFundMe cause for me. This isn’t really something we do in the UK; we British pride ourselves on self-sufficiency; not burdening others, keep calm and carry on – so we tend to feel uncomfortable about things like that.
But someone else setting this up, because they wanted to? It felt different. Nobody had ever done anything like that for me before. She said it was to help with costs while I was ill – I said we’d manage, but if she wanted to do it, I wouldn’t stop her. Not only did she set it up, but it raised over $7,000. I was absolutely gobsmacked by the generosity of the people who donated.
As it turned out, we needed it. And I’ll tell you why, if you donated, I am so incredibly grateful to you.
I was re-diagnosed on 21st May, the week after World Tour in London. I was expecting, therefore, that I’d be given a surgery date fairly soon. As it happens, it got to early/ mid-June and I still hadn’t seen any progress on that front. They’d said it could take a month to get organised, but the lack of transparency was driving me mad.
I’d originally said I preferred to have a double mastectomy with an immediate reconstruction using implants (yay, I’d get my Katy Perry boobs!). It made sense to me – easy operation, maybe I’d have to go back and have a couple of tweaks later. I got into a text conversation with a friend’s wife who has very recent experience and her before/after pictures looked amazing. So I was cool with the idea of having breast implants.
Having reconciled the anger of this recurrence, I waited for my doctors to have their weekly Multi-Disciplinary Team (MDT) meeting at the hospital, whereby they would discuss my case and I’d possibly then get a date for an appointment with an oncoplastic surgeon – I wanted a double mastectomy with immediate reconstruction. I waited about 10 days for that meeting. The whole thing just seemed so damn slow. I know there are others who have cancer worse than I do – far worse. But surely I should at least have some indication of what would happen and when? I mean…it’s still here…it’s still growing….HELLO???
By the time the MDT meeting came and went, the only outcome was that they’d decided I should meet with an actual plastic surgeon. I only discovered this after calling and leaving messages with the breast care nurses at 2 hospitals for an entire morning while I was at iXFest – gutted to be distracted by this crap during a pretty good company off-site. Then when they finally called back, I spoke to an irritated-sounding lady who talked to me like I was an inconvenience that she wanted off her plate as quickly as possible. I decided there and then to make it easy for her – I’d had enough, I was going private. I didn’t care how much it cost between then and July; I’d manage.
Ahhh come on Gemma….you didn’t have to wait that long, I hear you say. The problem is, managing an anxiety disorder which is exacerbated by a major life event / emotional trauma means I can’t relax until I have a clear process and I know where we are on that path. Inability to relax = Gemma gets shouty, can’t cope with simple conversations without losing it, can’t concentrate, overthinking, heart rate up – the works. My family doesn’t deserve that.
So I did the only thing I knew how. I lit fires under some asses. I called the private hospital in Hitchin straight away and booked an appointment to see Dr Hyder Ridha, the plastic surgeon that my consultant, Mr Wood works with. Then I went off to have drinks and play Beer Pong and Bucking Bronco with my Bluewolf family.
I met Mr Ridha the following week. When I look back at that appointment, I feel like cringing. I went in all jovial, joking about this and that, being my default I’m-feeling-uncomfortable-so-I-need-to-work-harder (disaster) self. The doctor wasn’t really responding to it. He asked me to list key facts from my medical history, took a look at my body and gave me three surgical options – complete with trade-offs, pros and cons. He was really great at explaining the risks.
Silicone implants put into the breast pockets after all tissue removed
- Pros: quick, uncomplicated surgery with a quick recovery time
- Cons: risk of capsular contracture because I’d had radiotherapy. That would be painful and he’d put money on it that I’d be back in having them replaced sooner rather than later. Also, I’d be back in surgery regularly for the rest of my life having revisions done.
- Conclusion: not really recommended for me.
Latissimus Dorsi Flap
They would take two pieces of tissue from my back and put them into the breast pockets.
- Pros: High success rate, still relatively uncomplicated, it’s your own tissue so your body is not going to reject it, it ages with you
- Cons: Scars on my back, risk of it not working, smaller breasts, slightly longer surgery and longer recovery period
- Conclusion: I didn’t like the idea of being in pain and not able to lay on my back because of additional pain there – and smaller breasts. I’d like to keep what I have if I can.
They would take a large piece of fat and tissue from my belly, shape it into two breasts and attach the flap’s blood vessels to blood vessels in my chest through microsurgery. If you watched the BBC’s Surgeons: On the Edge of Life (go to 12:00) – they did this for someone in episode 1.
- Pros: It’s my own body, they can more or less give me the same size breasts as before, it mimics breast tissue really well, I’d need far fewer revisions in future
- Cons: it’s complex, incredibly expensive, takes a long time to do (8+ hours under anaesthetic), a 4-7 day hospital stay afterwards, the recovery period is about 8 weeks, it might not work (though the risk is low), I’d need a scan to check the size of my blood vessels and if they weren’t the right size, it wouldn’t be an option
- Conclusion: this is the “gold standard” reconstructive surgery option and, in his view, the best option for me
When he started to draw it all out, I was choking back the tears when I realised how much they were going to do to me. The fact that he’d said it was the gold standard made it a no-brainer, but still, it’s huge.
He showed me some photos of other patients’ reconstructions (which looked really good) and pointed me in the direction of a support group – I’ve contacted them and left a message – no answer to this day. Another thing that set my anxiety off, but hey.
It was easier to examine these when I translated it into a client/architecture mindset – just a coping mechanism – but I found I could look at the doctor with a renewed sense of respect for his profession when I could draw parallels between his consultative approach and somebody’s system landscape. Weird? Yeah, I know. But it makes sense to me, as I sit and contemplate what this is actually going to do for me.