156. Onwards and upwards

The news is good for me and bad for this cancer blog.  Let's start with the good news. The lab results are back. No more cancer found. Not in my lymph nodes, not anywhere else.

No need for radiotherapy (hurray) or chemotherapy (hurray doesn't begin to cover it).

My friends, I am done. It's onwards and upwards from here. I can't tell you how much of a relief that is, and how brightly the next few years now shine ahead. Knowing that yes, I am still put firmly in my place if I think Aha, feeling better, let's do X or Y or Z which is then followed by an all-of-a-sudden collapse - but that will improve. And then I am truly back to being able to do X and Y and Z: perhaps even all at once.

Since my last cancer, I have not taken my health and energy and enjoyment of life for granted. It is a blessing to be counted, and I have been counting. What I hadn't counted on was the outpouring of love and support from all of you. The hundreds of messages, the prayers, the cards and flowers and chocolates and thoughtful gifts (yesterday there was a delivery of a big box of muffins). I will stop short of saying that it was worth getting cancer again just for the experience of being carried on wings, but there is a truth in that too.

I was unexpectedly nervous yesterday, waiting for the Chief's phone call.

No need to come into hospital, they'd said. Better to stay away, what with Covid and all that. The surgeon will ring you at noon.

I woke up from a dream that I'd missed the call (because I had popped into work to say hello to my team), and by midday I was clutching onto my knitting with husband next to me. I feverously knitted several inches of sleeve before the Chief phoned two hours later.

It's so easy to see why people forget everything they wanted to say or ask, and don't really take in what a doctor says. Despite being a confident patient and fluent in Hospital Language, I was in real danger of simply saying Yes doctor, of course doctor, bye doctor so we'd written all our questions down. Once we got talking, it was fine and I was back to being able to discuss things intelligently, but those nerve-racking waits for results could easily reduce the most confident of patients to something small and powerless.

So, in case you remember some of my questions from last week's blog and are wondering about the answers, here they are.

Q: How does hormone treatment work? Is the job of those pills to prevent the cancer coming back in your breast - in which case, is there any point in taking them, now that I have zero breasts?

A: It is indeed their job to stop the cancer coming back in your breast, but that can include the skin of the breast, so yes, it might be worth persevering with those. "What would you prefer?" (asked the Chief). "Well," said I, "I'd take your expert advice on that, but if it hangs in the balance, then I'd rather not take any more pills." The Chief agreed but is going to discuss it with the full team. For now, the thinking about those pills (which I've taken for seven years, with three years still to go) is to sack them. Grounds for dismissal: You had ONE job...!!

Q: Now that I've got two breast cancers under my belt, would it be prudent to have genetic testing? Two daughters, you see.

A: Initially no, because I'd said that I had no family history of breast cancer. But in the past week I've remembered a relative who was diagnosed after me (I'd forgotten that "history" can also include "recent history") so now I tick enough boxes to get a genetic testing referral.

Q: What is the best way to cope with all that spare fluid sloshing around behind my new scar? It's the size of my previous A-cup.

A: Grin and bear it. I won't bore you with the details of the discussion, which included the Chief sighing Oh Lord (I found that remarkably supportive) and explaining, "You can imagine the many meetings I've been to where we looked at possible solutions! It's 2022, and we still haven't cracked it!" and, alarmingly, "There's a surgeon in Germany who puts his patients in a corset for six weeks. Can you imagine? SIX WEEKS!!?? And it doesn't even work. You wouldn't want that." I agreed that indeed, I wouldn't. I also accept that draining the fluid (a) risks introducing infection and (b) encourages the body to make more fluid. But what am I looking at? A few weeks? A year? About three months, the Chief reckons. Oh well. Grin. Bear.

We raised a few glasses last night.

I am going to be sensible, I promise. My GP has signed me off work for another month. I have gone to East Sussex for a couple of weeks and am going to spend my time watching the remaining few episodes of The Great British Sewing Bee before the brand new 2022 series starts next week (don't miss it... BBC1, 27th April, 8pm), plan my new wardrobe, make daughter a ball gown. I am going to smell the tulips, walk among the bluebells, swim in the sea (sorry nurse, I'm ignoring your advice to wait six weeks before swimming. My scar has healed so I can't see any reason why I shouldn't take a life-affirming dip). 

I am going to live. 

So, as I said, bad news for this blog... You can safely assume that no news is good news. Now, excuse me, Otus and I have some walking in the woods to do.

155. The sewing solution to feeling sad

Apologies. I promised you a week off from this blog, yet here I am again.

I thought I'd tell you about my YoYo day.

Up: Mornings are always good, as no energy has yet been spent so there's a promise of it stretching further than yesterday. The sun is shining. Let's get out of my slouchy outfits and into one of my lovely summer dresses. I even reach for my earrings. Definitely up.

Down: Last year's new dress, barely worn and perfect for a day like this, no longer fits. With nothing to filll it, the top half looks ridiculous. So do various other favourite dresses. Reach for the chocolate that a friend sent me in the post yesterday (thank you - tiny up in my down moment) and watch yet another episode of Sewing Bee. 

Up: Only 1 Sewing Bee episode, and I think I have enough energy to head for the sewing machine. I started making a dress the day before my mastectomy (yes, I know, but I'd finished all my work and still had a day's waiting to do, so I needed a project to take my mind off it). There wasn't much left to sew, but every time I've tried in the past week, I had to give up after just a few rows of stitching. Now the sun is shining into the room, the fabric feels nice & soft & cheerful, and I think I can finish this now.

Down: Did shed a few tears over that sewing. For all my positivity and optimism, this is a bumpy road.

Up-Up-Up: Tadaa!

1 new dress for Easter 2022

It somehow brings my mother to mind, in a good way. She had little money but lots of oomph, and used to sew three matching new Easter outfits for her three daughters. Thank you Mam, for giving me the skills to make my very own new Easter dress.

3 little dresses made for Easter 1969.
I think Mam used a couple of old towels for fabric.

154. A patient must be patient

 I need a bit of revision on this crucial How To Be Patient course. It comes in three modules:

1. A patient must wait patiently in waiting rooms.
2. A patient must wait patiently for test results and doctors' verdicts.
3. A patient must wait patiently to get better.

Let's go through them in turn.

1. Waiting rooms

This, I am delighted to discover, is an outdated module. I can only think it's thanks to Covid, although I'm not sure quite how that has made it consistently possible to see me within five minutes of the appointed time, whereas before I'd have to settle in with my knitting. So, moving swiftly along to module 2.

2. Test results

I really thought I'd got better at this. One day last month, the hospital sent me five letters simultaneously (clearly, Covid hasn't quite managed to sort out a way to reduce spending on postage). Each contained instructions about a different trip to hospital. (There were a couple of other trips too, including a Covid test, but for those I was summoned by phone).

22 March: check that I'm fit for surgery

31 March: get breast injected with something radioactive

1 April: get operated

8 April: get wound inspected

13 April: see the surgeon in the Breast Clinic.

That last one... that's the one I was waiting for. That's when I was going to be told whether anything dodgy has shown up under the microscope. That's when I'd find out whether it's onwards and upwards from henceforth, or whether it's back under the knife, the radiotherapy machine, perhaps even (gulp) the chemotherapy lounge.

I hadn't realised quite how much my life has been on hold until that pivotal verdict. I thought I was fairly relaxed about it all, perhaps more or less convinced that it'll be the Onwards & Upwards possibility. But you never know until you know.

I much prefer to attend tedious appointments (injections, tests, operations) on my own, but for anything involving news & information, Husband comes along as it's not just news for me, it's news for both of us. So, we duly turned up for my 11.50am slot and were called in by a junior doctor at 11.51 (see? No need for module 1). When she took us past the Chief's office to a room all by herself, I knew it was Good News - in the same way I knew it was Bad News when on previous occasions the breast care nurse called us in and accompanied us to the surgeon's office, as such reinforcements are usually needed for bad news situations.

What I hadn't counted on was that it was simply No News. The lab results hadn't come back yet. Nothing more to say. The Chief will see you next week instead, or actually, let's make that a phone call.

It was a lovely doctor, but she didn't know the answer to any of our questions (to her credit, she didn't make up any answers either, but wrote them down with a promise to pass it on to the Chief). Questions like:

How does hormone treatment work? Is the job of those pills to prevent the cancer coming back in your breast - in which case, is there any point in taking them, now that I have zero breasts? Or is it their job to prevent any cancer cells with travel plans? Also: Now that I've got two breast cancers under my belt, would it be prudent to have genetic testing? Two daughters, you see. And what is the best way to cope with all that spare fluid sloshing around behind my new scar?

It was a case of all dressed up with nowhere to go. I barely had the energy to sit upright on the bus home. I collapsed for the rest of the day, not just with the physical effort, but also (I think) with the distress of having to wait yet another week for those possibly life-changing results. Tips on how to cope with that kind of waiting, anyone?

3. Getting better

It's not easy for us, women of the multitasking generation, to go with the flow and have NOTHING on the must-do list. Now that I'm two weeks post-surgery, I realise that Do Nothing was in fact on my to-do list, but that was last week's list. For this week, and the weeks after that, there were things like Go for longer walks and Sew a new wardrobe and Sort out photographs and even (in week 5 perhaps) Write that paper you won't have time for once you're back at work.

You see, even at times like this, there are expectations. That's my own expectations, by the way - everyone else (including my colleagues and manager at work) instructed me to "take as much time as you need" and "don't worry about anything". They are right, of course, but will I listen??

Because here I am, worrying about my inability to do Restful Things, like sewing, or reading a book every day, or talking to friends.

At least I really do know now that it will get better. But when? That is not under a patient's control. Last time, I was properly back at work after a year but it took about three years before I was truly back to full health and energy. I don't even dare think about that now.

Here endeth lesson 3. I'm going to have to lie down after all that. I won't be back on this blog until next week, so you'll just have to be patient. Happy Easter everyone!

Note to self: Be patient...

153. Happy scar or sad scar?

”How are you?” I hear you ask.

A week post-mastectomy, I’m fine, really, I am. I have been amazed and rather delighted by the easy wound. How on earth can you have your entire breast chopped off without any pain or bruising?

I am unexpectedly happy about being breast-free.

Breast-free = worry-free: No breast = no breast cancer. But it’s not just that. Somehow, I feel more myself, more whole rather than less whole.

That is the unexpected part of this journey, but when I stop to think about it (and I’ve had rather a lot of time to stop and think this week) it begins to make sense. During the eight years since my first mastectomy, I have become at home with my flat half. It belongs to me and my life story. As the years ticked by, it was increasingly my breast side, rather than my flat side, that seemed out of balance. She was like part of the cast that appeared in Act II (adolescence) and rose to a starring role in Act IV (early motherhood), but whilst her sister was spectacularly killed off in Act VI, she remained in the background trying to pretend that Act VI didn’t happen.

Now, I’m getting my balance back. I think here lies my very personal answer to the Dolly Parton question. I will not be ashamed, but proud of the story of my life. Grateful that I am not yet in the final Act, and looking forward to skipping into Acts VIII and IX unburdened by bras, Dolly-sized or otherwise.

That’s the profound answer to your How are you question. None of this comes without major adjustments, which (added to the intense fatigue - see below) is why I remain in hiding. And although my bold statements on The Future Is Flat are now on the internet, I reserve the right to change the script.

The bandages came off yesterday.

I’d been looking forward to this, as I was eager to find out whether my scar was happy or sad. Who knew there was such a distinction? When one of my surgeons popped round as I was whoozing in the Recovery Room, a few hours post-surgery, he explained that the Chief (who had wielded the knife) always tries to make a scar look happy.

“But then we looked at your other scar and thought, hm, that one looks a bit sad.”

Sad? Surely not? See above: I’m rather fond of my other scar, so I felt rather protective of her. But once I got to a ward with a bathroom mirror, I checked and saw what they saw, a down-turn at the sternum.

I’d been too taken aback to ask whether they’d gone ahead with Happy or decided to mirror Sad.

So, off I went to the breast clinic yesterday, eager to find out. I was also rather eager to have the fluid drained that had gradually accumulated in sufficient quantities to fill, perhaps not a Dolly Parton cup, but at least a Twiggy. They had to do this several times with my previous mastectomy, even after removing my drain - extract the excess fluid with the help of an oversized needle. Alas, not nowadays. They prefer to let my body do its own job, rather than risk introducing an infection in the wound.

So, I’m still lob-sided, as you can see. But the bandages have stayed off and the scar looks almost healed. I marvel at the body’s capacity to stitch together two bits of skin that haven’t previously met.

Now, let’s talk tiredness.

The word TIRED doesn’t cover it. I’m scraping the bottom of the barrel for enough energy to write this blog post, and you’re only reading this because it suddenly occurred to me that I don’t have to sit at my computer, I can write this on my phone, lying down in bed.

I’ve done some gentle daily Pilates and half hour walks, initially with the aim of getting strong again, but the real benefit is earning the right to go back to bed. I’m a bit frustrated that after a week of serious resting, I all but collapsed in the shower this morning as I’d been up for two hours.

On the upside, I shall emerge as the country’s most knowledgeable amateur sewer, as I’m now on the fifth series of The Great British Sewing Bee. That’s almost 30 hours (and counting) of watching people sew.

What I have yet to see someone make, though, is a garment that fits a breastless woman. Perhaps I should come forward to fill that gap in the market? I can feel a Project coming on. That’s assuming my energy will return, and (minor detail) I won’t find myself back on the chemotherapy rollercoaster.

I’ll get the lab results in four days’ time, and am pushing that possibility to the outer edges of my mind.

Now… Before I sink back into the pillows, here’s the answer you’ve been waiting for.  

Happy scar or sad scar?

Can’t be entirely sure yet (as it’s stretched across that mount of fluid) but I’d say it’s neither. Just straight. Which is perhaps as it should be, as life is never just happy or sad.

152. Mastectomised

Reporting in. The deed is done, and I’m amazed at the ease of it.

Here’s me yesterday morning, with cancer. 

Here’s me this morning, cancer-free. Thank you Chief, great job. Thank you NHS, you’re something extraordinary.

Flat wound, no pain, no drain.

Nurses seem amazed too: Where’s your drain? No drain. What, no drain? No.

All lymph nodes still present and correct, minus two (they inject your breast with something radioactive the day before, which travels to your armpit and lights up the Sentinel Node - that’s the first lymph node standing guard before all the others, so if cancer decides to go for a wander, it goes there first. They take it out when you’re under the knife, to check for dodgy cells on the spot. None were found so that was that.)

The Chief stuck his head round afterwards and pronounced that I could go home the same day, but that seemed a bit rash so I asked to stay the night. I was feeling rather weak and whoozy and very grateful to be looked after.

I stayed in the Recovery Room for 8 hours.

Whilst they struggled to find a ward with a spare bed, I had my very own nurse whose job it seemed to be to watch over me every minute. We ended up chatting about her nursing dissertation, on the effect on women of a double mastectomy. The fact that I had the headspace and desire to find out what makes my nurses tick, and why they chose to do what they are doing, tells me how ok I was. (It also shows how good she was. Only nurses who clearly see you as a person invite this kind of interest.)

Otus well looked after by the lovely Recovery Nurse

The lack of swelling is quite amazing.

Last time, my wound swelled up to the size of the remaining breast, no softie needed to pretend anything; and I carried a drain around for a good week. I then persuaded them to take it out, still oozing somewhat but I had to go to the Netherlands for my mother’s funeral. Altogether a different experience, that first mastectomy. It was a bigger operation then, as they did find cancer in those lymph nodes so they all had to come out.

It was the first thing I did when I woke up yesterday. Feel under my armpit, look for a drain. I couldn’t quite be sure so tried to ask, but was too whoozy and slurred. It took a while to be reassured.

The lack of pain is bizarre.

It was somewhat bad for the first couple of hours so they gave me morphine (very effective), but once that wore off, no pain returned. If any of you one can explain that, I’m all ears.

Can’t say I wasn’t somewhat trepidated. More nervous, in fact, than usual. Not sure whether that was the thought of having my breast chopped off (I didn’t even think about that last time, that seemed such a trivial worry, as there was the rather more important story of my mother dying). Or was it the worry that cancer might be with me for life? And a shorter life than hoped, therefore? Whatever it was, I am trepidated no more.

I look down at my flat chest and it makes me feel happy and positive and strong.

Now I’m sitting comfortably in bed with an old series of The Great British Sewing Bee on my iPad. A young occupational therapist just came round to make me gently move my shoulders, and left minutes later when I clearly needed no help swinging my arms and shoulders around in all directions. No pain? No pain.

Thank you all for your many many many messages. I still don’t feel up to responding but I’m grateful. To have so many people thinking of me feels like being carried. That’s a blessing indeed.

Doctors came round just as I was to press PUBLISH. I’m going home.