Well, so much for onwards and upwards. This is a tale of woe with some seriously unflattering pictures thrown in. If that's not what you're after today, I suggest you either skip to the final paragraph or skip this blog altogether. If you're bravely reading on, I suggest you finish your breakfast first.
The outlook ten days ago: Bright and sunny.
I'd been to the office for a trial day (sitting on a job interview panel for a new member of my research team), and how wonderful that was. Being with my marvellous colleagues (utterly reassuring to see how well they are managing in my absence) I am reminded how much I enjoy my job. I managed a whole long day. Floored in the evening, yes, but definitely looking forward to easing myself back into my projects.
I felt 110% positive and happy. It was good to have six weeks not only to recover physically from major surgery, but also to give my soul time to catch up with my body. I just re-read what I wrote about that last time round, four months post-cancer-diagnosis, and the process is the same now, but it's been a bit quicker:
What have I done to help my soul catch up? Probably this: sitting quietly, being on my own, meditating, swimming, sewing, listening to the rustling trees. And also this: hearing myself say it out loud. Reading back what I have written. I have cancer. That is another reason why I am talking so much about it all, and publishing my thoughts online.
All this is hard work. It may not sound like work, but oh, it is. I have had to excuse myself from my responsibilities as a mother, friend or employee.
Ten days ago, I was quite chuffed with myself. Look at me coping with all this! SuperWoman!
Husband and I decided to spend a few more days in East Sussex to relax and recuperate before going back to work. The night before disaster struck, I went swimming in the early evening rain when the sun broke through, throwing a huge rainbow over the North Sea. Here it is. It was blissful and I felt blessed.
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The outlook nine days ago: Thunder
I woke up on Thursday morning with sky-high fevers untouched by paracetamol. How do people manage on their own? Thank goodness for Husband. I was unable to move, eat, drink, speak. What could it be? Not Covid (I checked). It didn't feel like flu. Could it be an infection of the wound fluid, still annoyingly sloshing around in huge quantities and showing no sign of abating? The next morning, Husband rang my breast nurse to ask. Was the area hot? Well yes, but so was the rest of me. Was it hard? Not really, sloshing etc. Probably nothing to do with the surgery then, was the verdict.
We sat it out for the day but by early evening, we were worried enough to ring the 111 NHS Helpline. They asked lots of questions I barely had the energy to answer and booked us straight into A&E. Husband drove with me lying in the back, having made it into the car, head on my pillow which would turn out to be a godsend as A&E departments only have hard chairs. I couldn't sit upright and there were no trolleys, so I lay down on the cold floor in desperation, Husband having retrieved that lovely soft pillow from the car.
By this time, it was obvious that the problem was indeed the breast wound. It had turned bright red. When I lifted my shirt to show the nurses, there was an Oh my goodness gasp.
Let me show you too, in the spirit of de-mystifying and normalising breast cancer. Is it pornographic to show one's bare breast online, if there are no bare breasts to show? I genuinely have no idea. I may end up regretting this photo and taking it down. (Does one still have to cover up on the beach, or can one join the lads with trunks only? I have no idea about that either. There are no examples or role models out there.) Any honest thoughts or opinions are most welcome.
Long story short: emergency hospital admission, antibiotics, wound drainage.
The hospital bed felt like the Hilton after all that waiting on floors and on hard chairs.
The following day, they drained some 400ml of nasty-looking pus (bon appetit) and I was sent home with antibiotics. I can't tell you what a relief it was to be rid of the drag of all that fluid. It quickly returned though (thankfully not in the same quantities, but still enough to fill a coffee mug) and a few days later, I went back into hospital to have another 250ml drained, this time under ultrasound guidance.
I continue to be amazed and grateful for the NHS. It's nothing short of miraculous. There I was, not even in my own hospital (this was the Conquest Hospital in Hastings), and I had so many resources thrown at me, no questions asked, all free of charge. The ultrasound man and his helpmate spent about an hour carefully extracting all that fluid with an array of oversized syringes.
I spent the rest of the week just lying down.
The fatigue was (and still is) overwhelming. I feel like a deflated balloon. I've read a few novels and watched a bit of TV, but most of the time all I can do is just lie there. I've felt uncharacteristally despondent, tearful even. Being so weak and out of control has thrown me.
I missed Liz, my GP, who was a lifeline last time round (we ended up writing an article together about being a healthcare-professional-turned-patient) but she has since retired. I haven't needed a GP since then and don't know any of the current doctors at my local GP practice. Last month I just requested a sick note online and was promptly sent one by text message. This time, I asked for a telephone consultation.
As soon as she rang, I sobbed and sobbed. For goodness sake, I don't even know this doctor. But a good GP (and most of them are so good) really are invaluable, a safe space, someone to build a relationship with, someone who can get to know your story. She listened and resolutely signed me off work for another month. I was grateful. In the space of a week I'd gone from itching to go back to work, to crying just at the thought of having to get my head round those responsibilities again.
Outlook today: Expect rainfall
We went to the Conquest Hosital for a final check yesterday. The infection has settled. No more redness or pain, but frustratingly, the fluid ("seroma" by its proper medical name) keeps coming back. What to do about that long term? To drain (which would need to be done regularly, each time risking infection) or not to drain and wait for the body to reabsorb the fluid (which seems the à la mode approach nowadays)? Personally, I'd vote for drainage. What is to stop the whole thing getting infected again anyway? This week is not a nightmare I'd care to repeat. But it's probably best for my own breast care team to make that decision. So last night, we finally made it back to London, with an appointment at the breast clinic in two days' time.
I have taken the hospital's advice and tried to keep pressure on, which I hoped (in vain) would stop my breast from filling up again - but it does have the advantage of feeling comforting, reducing the dragging feeling, and perhaps (my untested theory) speed up healing by keeping everything in place.
Methods of pressure have been a bit Heath Robinson. It took me an hour to dismiss the advice to lie on my stomach. Even if I end up with a nice flat chest (which I wouldn't anyway - see above), I would have a painful permanent creak in my neck.
Next up was a corset fashioned out of an old folded-up tea towel, some button hole elastic and a bit of ribbon (amazing what you can find lying around, and the sewing machine was all conveniently set up so I could just about manage this). It sort of worked and might even qualify as a New Fashion Trend, but I ended up with an un-Jane-Austen-like bulge over the top (that fluid finding a new way in).
I've tried bandages fashioned out of an old sheet, but that was too much of an unworkable faf. The latest plan is Amazon's answer to my question about Chest Binders. I'm introduced to an intriguing and rather moving new world of young trans people supporting each other and being supported by families (My trans son is 12, what size does he need?) and ordered a contraption for Tomboy Lesbian Trans that promises to make my chest look flat and me look cool. It arrived today and was far too small, so I'm awaiting the next sizes up. We can but try.
Long term weather forecast: Sunny.
That's the promised positive final paragraph. I do believe in this forecast. But in the meantime, I'm going to lie down on the sofa, back to ignoring messages and generally ignoring life. See you later.
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