Breathing easy

Queen victoria gardens

This is the garden at Queen Victoria hospital in East Grinstead where I spent all day today at appointments. It pretty much sums up my experience. And it’s the first time I’ve felt moved enough in a medical setting to take a picture of something beautiful. There may have been other beautiful things in other places but I’ve never felt relaxed long enough to notice, nor been sob-free long enough to focus.

Today was different.

For the first time I felt unequivocally  listened to, treated like a whole human person and put firmly at the centre of everything that will happen in the coming weeks. It was such a new feeling that I got over-excited until I remembered that this is how it should feel. This is how it should be.

My first appointment was with the health care assistant who within two minutes had jollily told me she had just been diagnosed with diabetes. We spent most of the time together comparing notes on our various diseases.

She weighed me. My ridiculously unscientific plan to gain more fat in my belly by eating as much cake as possible seems to have paid off. I’m one and a half kilos heavier. No guarantee it’s gone where it’s needed though. But the nurse did commend me on my efforts and reinforced the idea that maybe I was on the right track.

She measured my height. To test for MRSA she got me to stick very elongated cotton buds in my nostrils and down the sides of my thighs. Yes alright, in my groin. I’m not sure why I don’t like that word. It’s a perfectly good word. Perhaps because I link it with the word ‘strain’ and imagine some parallel universe where I attempt to do the splits and it goes predictably wrong.

The MRSA results will be back in two days but even if I have it, they still go ahead with the surgery. I’ll just have to apply some anti-MRSA bodywash before I go in. The hospital has never had MRSA in there but they’re totally up for putting their perfect record at risk to make sure I get into surgery.

Next up was my ECG to measure my heart. All was well as was my blood pressure, heart rate and all my answers to the medical questionnaire were acceptable.

Then I got a break for lunch and that’s where I found this wonderful garden outside the cafe. The coffee was even good and at the randomly awesome price of £1.48, who can say no. Cherry on top, the WiFi was free.

NHS coffee

Last appointment was with the anaesthetist. Up to this point I was thinking maybe the nurses were different. Nurses are generally easier going and I’ve had less problems with them than the consultants. And the anaesthetist was not a nurse. Maybe this bit of the appointment would be tricker.

Nope. She was as awesome, if not more than the nurses before her. She told me in extreme detail what was going to happen before, during and after surgery. She even told me about procedures they’d do that would be invisible to me because I’d be asleep. That I wouldn’t have known about. That maybe I’d end up with bruising from but wouldn’t know where it’d come from. She told me everything.

When I told her the anti-emetics I had in chemo hadn’t worked at all and maybe I’d have problems with the same ones they give me during surgery. She didn’t blink. She didn’t sigh or fob me off. She carefully explained the difference between what chemo does to the nausea centre of the brain and how the anaesthia works. She was attentive and genuinely interested in the story I told of how vaping cannabis solved my nausea in minutes. She got passionate when we discussed the neurology of nausea and pain and the fine line between poison as medicine.

We spent most of the appointment discussing cutting edge research and exploring approaches to cancer and surgery that values good mental health and the benefits of informed patients who are in control of their treatment. She only saw these as positive things. Never once did she get defensive. Never once did she hurry me along or make me feel I was a problem. That my knowledge and need for control were annoyances.

Sun sculpture

I can see why this hospital is a centre of excellence. They take care of the whole person. They are passionate about their field so that when their patients ask questions, they get excited. They want to share their knowledge, not hoard it. They want to learn and are open to patients bringing them new knowledge. They do individualised medicine as much as they can with the tools they have.

Now I’m feeling confident and happy about the surgery next week. This experience is so hard and they just made it that bit easier.

And I had my boobs professionally photographed. In a properly lit studio and everything. What a day.

Decision

I just sent this email to my breast care nurse.

 

Hi Lisa.

Thanks so much for being wonderful yesterday. You were an enormous help and support. I’ve spent the day thinking intensely about what my decision is and this is it.

I’d like to have a bilateral mastectomy with immediate reconstruction both sides using DIEP flap. I realise that the reconstructed breasts will be significantly smaller but I’ve investigated how I feel about that and it’s ok. For me the symmetry and feel going forward into the future is the most important factor. I’ll be infinitely happier and more accepting of the results if we do it this way.

Thanks to the whole team for their patience and understanding. I hope things go smoothly now and looking forward to seeing you again soon.

Many thanks,

Heidi Bachram

Choices

I was sure of what I wanted when I went into the appointment with the surgeon today. A bilateral mastectomy with implants please. I didn’t have the whole low down on implants, but barring major disaster, that seemed the perfect option.

Then disaster.

The implant in my bad boob has a 40% chance of failure because of the radiotherapy done last time. The surgeon strongly recommended I not do that option.

So I’m there in yet another appointment having gone in expecting one outcome and suddenly being thrown into chaos. My hopes of avoiding an extra wound site have been dashed on the rocks of radiotherapy. In this reeling state, the surgeon laid out the only other options.

Option one: Single mastectomy and reconstruction from tummy tissue and breast reduction on the good boob to match. D cup sized boobs.

Option two: Double mastectomy and reconstruction using tummy tissue. B cup sized boobs.

The plastic surgeon was arguing for the first option as all my doctors have all through this process. Just as I was being swayed, in walked the mastectomy surgeon. The knee patter.

He smiled warmly and greeted me as old friends. I smiled back politely and then we went back to the well trodden road of back and forth. Me expressing a worry, him dismissing it. To the point where he said that my understanding of my cancer was based on Daily Mail articles.

Yes my friends, he said that.

He mistook my stunned silence for acquiescence and went in for the closer. He leaned in and said I must make a decision quickly. The clock was ticking and I had to get a move on. Just before he had entered this space, the plastic surgeon had said I could take a couple of days to make the right decision. My surgery is booked in for the 3rd of October, three whole weeks away.

At this point I could feel the tears of frustration coming. I was not going to cry in front of this man. Again. So I stood up, told them I needed a break and went to cry in the corridor. Not so much a huffy walk out as an empowered decision to remove myself from the situation.

My family and my nurse followed after and we occupied a different office far away from him. We invited the plastic surgeon back into what we claimed as our space and the whole dynamic changed. He agreed to whatever surgery I wanted to do and checked out my tummy fat again. Apparently it’s a ‘good belly’. Think he was trying to be nice.

We didn’t invite the mastectomy surgeon back in. But he came anyway. He hovered at the door, full of apologies and big statements about just wanting to do the best for me. I tried to tell him again that I only want to be listened to, to be heard. And he came in close for a hug I didn’t want and asked me to tell him we were friends again. His apology was as problematic as his errors. I couldn’t wait for him to go and he did quickly.

When the plastic surgeon left, he shook my hand and suggested that I could see the clinical psychologist. He didn’t offer this is a ‘you must be crazy if you’re not listening to me’. He offered it in the realisation that if I’m happy about the decision going into surgery, there’s more chance of me being happy coming out. And he at least counts my happiness as a measure of his success. I trust him completely.

We stayed a lot longer chatting with my breast care nurse. She shared her thoughts, much along the lines of the other lovely nurse. This is my life, they are men and don’t really get it, this is my decision. This is my decision.

So I made a pros and cons list. My only hesitation at going with my original choice of a double mastectomy is that now I have to have the third wound site on the tummy. It’s a bigger op using microsurgery to reattach blood vessels from the tummy tissue to the chest wall. So I’m exposing myself to a bit more surgery, a bit more recovery, a bit more risk. It gives me pause.

And small boobs.

But on the plus side is no more anxiety, no more mammograms, no more surgery.

Choices.

 

 

Data or driven

I went into my appointment with my oncologist today with prepared words. A speech I rehearsed many, many times over a weekend filled with worry. A speech that started with words like “confused” and “contradictory” and “opaque” when describing how my treatment felt up until now. Ending with feelings like “losing trust” and “lack of control” and “disempowered”.

My oncologist responded well. I suspected she would. She has spent more time with me because we did this all before. She knows me better, knows I respond to data, information and being heard. She gave me room to speak, she listened actively and explained everything in more detail and with more clarity than anyone has so far.

She laid out her view on why I shouldn’t go for a double mastectomy. She gave me the data: 0.5% chance of contralateral cancer (in the other boob), reduced to 0.3% chance if I have a bilateral (booth boobs off) mastectomy. I’d read data saying 0.7% but what’s a few percentage points between friends. Although there is a study showing a twofold increase in the normal risks for people with dense breast tissue, so that a potential 1.4% risk. Not to be sniffed at.

She moved on to her next argument that the hormone therapy they put me on will decrease the breast tissue density. Slam dunk. One point to her. Although it doesn’t solve the problem that a sneaky tumour might be hiding in there now. One the mammogram hasn’t detected.

Final argument and she went for a real finish: Death. Risk of morbidity is higher for mastectomy. I could die of an infection in the wound, from a heart attack or even just because it’s in the third quarter of the year. Except that didn’t quite hold up because they’re not just leaving the healthy boob alone. They want to slice and dice it to match the new boob. Breast reduction surgery carries its own very similar risk of morbidity as mastectomy. Boom.

After seeing her arguments be heard and not quite land, my oncologist said “This is your life. This is your decision.”

I burst into tears. It was the first time anyone had said that to me.

After the tears were mopped up, I left the appointment happier. I left feeling heard. But still feeling confused.

I decided to call the reconstruction nurse who is attached to the plastic surgeon. I told her I was still not sure about whether to have the single or the bilateral mastectomy. I told her I was considering implants. I told her all the doctors were advising against the double. She told me that if in the face of all those experts telling me not to do it, if I still couldn’t settle it, if I still had that “niggle” of doubt, then that’s the voice I should listen to. That’s the choice that would bring me ‘peace of mind’. And that peace was worthwhile. It was precious and the doctors don’t prioritise it. She said I should go ahead and do what feels right to me. What feels instinctive even in the face of all that opinion.

I didn’t cry. I didn’t fall apart. I felt power surge through me like an electric current. I knew what I wanted. I have all along. I’m not someone who isn’t open to data, to information. But the data let me down. It wasn’t conclusive. There are so many unknowns, so many risks and uncertainties. I have to make this decision on emotion, on gut. How will I feel afterwards? When all the doctors have disappeared and I’m left, for the rest of my life, with whatever has been done. That’s the decider.

I am going for the double mastectomy.

But I can’t ask for it for medical reasons. They will continue to argue against that. I have to ask for cosmetic ones. That I want symmetry and balance. That I want my boobs to be the same as each other. I don’t care at all about this but it will get me what I really want.

Peace of mind.

 

A glittery turd of a day

I started today with increasing clarity about my choice of surgery and the celebratory wearing of my new faux fur slippers and red sequined poncho. I felt more clear. I felt I was making a decision. And I felt like me.

Then I went to my appointment with my mastectomy surgeon.

There’s always the danger of losing yourself in these appointments. Of feeling clouded, overwhelmed and guided in directions you weren’t expecting. That the world of cancer knows more about you than you do. You will never again be the expert on your own body, never again be the master of your destiny.

There are always surprises no matter how hard you research or how in control you feel. I’ve had many of those surprises lately. First it was the calcifications, then it was pre-cancer, then cancer, then possible spread. Now there’s the chance I may have to do chemo. Again.

My last cancer was HER2+ which meant it over expressed receptors for that protein. It meant it was aggressive but it also meant I could get a drug called Herceptin. If this cancer is also HER2+ then I can get that wonder drug again. But it doesn’t come alone. It’s bringing a frenemy, chemotherapy.

The efficacy of the Herceptin is dependent on combining it with traditional chemo drugs. So to stop the cancer mutating and adapting, they hit it on multiple fronts simultaneously. I’d get this presumably because they want to give some insurance against the cancer having already left the boob. The cells too small to detect on any scan.

I didn’t get much information about it because the surgeon wanted me to focus on surgery and not leap ahead. I am not the person who can do that and feel better. I need to prepare for what’s coming. And I’m mighty tired of surprises.

I now have to wait for the pathology results to see if it is HER2+. I suspect it is because the last one was. I have an appointment on Monday with my lovely oncologist to talk through the options. I will accept the chemo if it comes. Oh, but I am dreading it beyond words. It’s the only treatment that gives me pause as to whether it’s worth it. It’s that awful.

On the surgery front, I came out with a different opinion. My whole team doesn’t want me to have a double mastectomy. Again they repeated that if I’ll be done in, it’ll be the bad boob and not good that will be the culprit. They want to me to do the least harm to myself. Maybe I agree. Especially if I’m having chemo straight after. So I’m thinking along the lines of a compromise. Single mastectomy on bad boob with implant. Then breast reduction to match on good boob.

A day that started good, went bad and is edging slowly towards peace and acceptance. One tiny, shiny sequin at a time.

Size matters?

I met my plastic surgeon. Words I never imagined I’d write. Or think. He passed the ‘human’ test with flying colours.

He greeted me by name, smiled and looked me in the eye. Tick.

He shook Lilah and Adam’s hands and learned their names. Tick.

He asked permission for every touch and apologised for the strange squeezes and tugs of my flesh. Tick.

He gave me all my options without prejudice and answered my many questions. Tick.

But now I have too many options and no perfect one, so Big Decisions will have to be made. I wanted my new boobs made out of my flesh and not implants. He poked and pinched my body in various different places. Not enough flesh on the thigh or back and not quite enough tummy fat for two boobs at the size I would prefer. Boy, did I feel like a plucked chicken on the chopping block being sized up for the best cuts. And never before have I wished more for a fatter belly.

Before my body changed for pregnancy, my boobs were consistently a size D cup. This is the shape my body wants to be without babies and ice cream. My surgeon doesn’t think he can make the new ones bigger than a B cup. A dramatic shift from the F cups they are now.

He also told me the bilateral mastectomy (both boobs off) is not statistically a guarantee the cancer won’t return. It’s more likely my bad boob will get me in the end, not my healthy one. Stats I could find (it’s very hard to find stats that represent your exact situation) say that there’s a 0.7% risk of contralateral breast cancer, a new cancer in the healthy boob. So the risk of keeping the healthy boob is fairly small. If he did a breast reduction on the healthy boob instead to match the reconstructed breast, half the breast tissue would be taken out so that risk would be halved.

The alternative option is to do the single mastectomy on the bad boob and reconstruct it from my tummy fat. There is enough for one boob at D cup. Then he’d reduce the healthy boob at the same time to match the size of the new one. I get the risk halved from the healthy boob and matching D cup breasts. But there is still that tiny, tiny risk.

And ultimately why am I risking it? For bigger boobs? For vanity?

Big questions.

There is the consideration that I have no clue how I will actually feel when I see my new size B boobs and they will be markedly out of proportion to the rest of my body. I will be looking at them for the rest of my life so I have to consider how that will feel. If I can’t accept them, the psychological stress is a far higher risk factor for cancer returning than any small benefit from getting rid of the healthy boob.

So it’s small boobs, 0.35% lowered risk, possible psychological distress.

Or

Proportional boobs, 0.35% higher risk, less stress.

One week to decide.

Plastic surgeon appointment

Just a quick one to let you all know I got a call from the plastic surgeon who is doing the breast reconstruction. I’ve made an appointment to meet him on Monday at midday. It’s a half hour consultation to make a decision on the surgery we’re going for and to be examined to make sure it’s doable. I can wait a few days to make a decision or decide at the meeting.

If I decide straight away then I can go for a surgical pre-assessment (blood test, weight, general health assessment, MRSA test) that day and then they look for a good date for surgery. I may have to get another CT scan to map my vessels and arteries. But I’m going to ask if they can use the one I had done last week.

I’m an “urgent care” patient so the surgery is prioritised and should be 1-2 weeks after the appointment on Monday.

So that’s sorted.

Now I’m off to stare at the stars and learn about expeditions to Mars.