Laying to rest the ghosts of mammograms past (and making up for a cancelled bike ride)

I’ve had a couple of weeks of laying old ghosts to rest.

First of all, I got the results of the review of the clear mammogram I had in October 2014, nine months before my diagnosis with Stage IIIa breast cancer (The details) in July 2015. The review found nothing remotely suspect in the original images; nothing was missed. The tumour I had in my right breast therefore grew from nothing – or at least from being undetectable on a mammogram – to probably bigger than 5cm* and out into the lymph nodes in my right armpit within the space of eight or nine months.

Secondly, I did a two-day bike ride that a friend and I had said we’d do together once my treatment was over and I felt up to it. This was to make up for my having had to cancel a long-distance bike ride to Brussels last September as by then I’d started chemo.

Clear mammograms

The results of clear mammograms that are followed by so-called “interval” breast cancers – ie cancers that are diagnosed between routine mammograms – are reviewed as a matter of course and the women notified of the results. I don’t know how soon after the fact the reviews usually take place but a couple of months ago I went ahead and requested that mine be done.

I had two mammograms in the 18 months preceding my diagnosis, one in January 2014 and one later that same year, in October (So you think you’re breast aware). Both were reported as clear at the time and, following the review that’s just been done, nothing has changed. The consultant radiologist who went through the results with me two weeks ago yesterday said that the team of five reviewers, four of whom were also consultant radiologists, could see “no malignant features or subtle signs of cancer” in the images. The official classification is “Category 1: normal/benign features”.

At least now I’ve got the results. This had been on my mind ever since I was diagnosed. I can now draw a line and move on.

It’s hard to predict the rate at which tumours grow. My cancer was Grade 3, the most aggressive grade. I’d known it was possible for the tumour to have grown within the space of eight to nine months to the size it was when I was diagnosed (it won’t surprise you to hear I’d discussed it with my oncologist). Nonetheless, I found getting the results of the reviews very upsetting. I’d been proactive in ensuring I was screened. I thought I was pretty “breast aware”. I felt, however misguidedly, that to be diagnosed with Stage IIIa breast cancer (after Stages IIIb and IIIc comes Stage IV, which is incurable) after having had two clear mammograms was not just ironic but massively unfair. I’d been doing pretty well with the whole “looking forward, moving on” thing, but this brought everything back. I felt I was in the middle of it all again instead of almost seven months out of treatment. The consultant and the breast care nurse who was also at the meeting were very sympathetic.

Of course I’m pleased that nothing was missed. If I’m completely honest, however, I think that if things had gone the other way a tiny, tiny part of me would have been relieved that I could put at least some of the “blame” for my cancer having got to Stage IIIa by the time I was diagnosed on something or someone else other than myself. People have said I did well to act when I did but I will always wonder whether I could and/or should have acted sooner. The further I get from last July, though, the less I’m able to remember how long I might have been wondering whether something was wrong. Anyway, you can’t change the past but you can change how you feel about it. There’s no point beating myself up about something I can’t change.

I turned 50 in July 2013 and, instead of waiting to be called in for a routine mammogram under the NHS breast cancer screening programme, towards the end of the year I phoned and asked for an appointment. I had my first mammogram in January 2014. They kept me on the system and nine months later, in October, I had what would have been my routine mammogram.

Mammograms are no more than a snap shot of a moment in time and screening picks up around one third of breast cancers. Considerably more breast cancers are found by women themselves than are found through routine mammograms so what happened to me is not unusual. I do wonder whether having had two clear mammograms in relatively quick succession gave me a false sense of security. Also, I wonder at which point my tumour would have shown up in a mammogram before I’d have been able to feel it. What if I’d had that second mammogram three or two months or even one month later? Would it have shown up then, when it was perhaps at an earlier stage? If it’d been found earlier, my risk of recurrence would be lower than it is and perhaps I wouldn’t have had to have so much treatment. I know better than to dwell on thoughts such as these but I don’t stop having them in the first place.

Bike trip
There are only so many tears you can cry in one day so a few hours after getting home from the review meeting I finally called a halt to my pity party for one. pity-partyThat evening I headed off to the pub to meet my friend Juliette to plan the bike ride we’d be doing the following week in the New Forest in Hampshire. I’d done a 63-mile bike ride with Juliette just days before I was diagnosed and, at some point after I’d cancelled the long-distance ride to Belgium that was planned for last September, Juliette suggested we do a trip together the following summer to make up for it. bikesAnd so we did. And what a fabulous couple of days it was.

Getting the results of the mammogram reviews helped me put one ghost to rest. Two days last week spent cycling in the sunshine through forests and along coastal roads, and past ponies, thatched cottages and duck ponds, enabled me to put another one to rest. I’d been worried about how long it might be after surgery before I’d be able to cycle long distances again… or indeed whether I’d be able to do such bike rides at all (Stopping the downward spiral). So a huge thanks to Juliette.

yorkshire-dalesThere’s more. The day after I got the results of the mammogram reviews, Andy, the boys and I headed up to Cumbria and Yorkshire to join our friend Dave Clark on a 14.5 mile leg of the 200-mile coast-to-coast trek from the Lake District in the west of the country to Robin Hood’s Bay in the east that Dave had started out on a few days earlier. Dave was diagnosed with Parkinson’s five years ago. He’s just turned 50; I’ve mentioned him before (Don’t wait for the rain to stop, dance – or cycle – in the rain).

Dave completed the walk in 13 days (https://www.justgiving.com/fundraising/ClarkysC2C, #ClarkysC2C & http://bit.ly/2dswuyQ) in an effort that was nothing short of heroic, helping raise £100,000 for Parkinson’s UK along the way. I’m sure Dave has his dark days but every step of that walk was life-affirming and a lesson to us all that what matters is the present and that making the moment count beats the hell out of dwelling on regrets about the past or worries about the future. This post’s for you, Dave.

*While my tumour was estimated to be probably bigger than 5cm, we never found out the precise size because I had chemo before I had surgery. I had such a positive response to the chemo (A busy week with welcome news – “no mass identified” and “no further surgery necessary”) that by the time I had my mastectomy there was essentially nothing left of the tumour to measure. Can’t complain about that although at the time it did freak me out that I’d never know the exact size of the beast growing inside me.

My A to Z of the past seven months

It didn’t take me long to put together this A to Z of the past seven months. It’s just a random snapshot. I didn’t think about it too much. If I’d done it an hour earlier, it would have been different. An hour later, it would be different again.

A: anxiety, appointments, antibiotics, appreciation, awe, Andy

B: bald, blanket, bike, blogging*, Breast Cancer Care

C: consultants, chemotherapy, cellulitis, compassion, confusion, children, Christmas

D: drugs, dying, decisions, dad

E: exercises, emotions

F: flowers, fear, fate, family, friendship, fellow travellers

G: Glasgow, Google, grateful

H: hospital, hope, humour

I: inadequacy, ignorance, injections

J: journey

K: kindness

L: letrozole, lymph nodes, life, laughter, love, luck, laptop

M: mastectomy, MRIs

N: needles, numbness

O: operation

P: Paris, panic, physiotherapy

Q: questions

R: radiotherapy, results, recurrence (worrying about), resilience, relief, rest, recovery, reconstruction, Ruth

S: surgeons, surgery, scars, scans, shock, sadness, smiles, Scrabble, Sugar Loaf

T: tiredness, tears, tennis

U: ultrasound, underwear

V: veins, visitors, victory

W: worry, wigs, writing, walks, wishes, Wimbledon

X: x-rays

Y: yesterday, yearning

Z: zoledronic acid.

That’s a bit of a weak finish but everyone always struggles with Z.

*My posts are already becoming less frequent and I guess I’ll stop blogging at some point. I’m not there yet, though. Follow me if you want to be notified when I post something new.

“…3, 2, 1 and relax. Congratulations!”

I’d heard the radiographers count down from three then tell me to relax dozens of times during the 15 sessions of radiotherapy that I’d already had.

I’d to hold my breath seven times during each session as the radiation was delivered (A very strange position to be in (Radiotherapy Part 1)).  “3, 2, 1… and relax” was what the radiographers said through the intercom at the end of each hold to let me know I could start breathing normally again.

This time was different. It was Friday 26th February and it was a big day. It was my 16th and final radiotherapy session and it marked the end of the hospital-based phase of my breast cancer treatment. That’s why the radiographer guiding me through that session added “congratulations” after his final instruction to relax. Now for all I know they say that to everyone at the end of their last session. Regardless, I really appreciated the gesture. The moment deserved to be acknowledged. I’d been preparing for, having or recovering from treatment for seven months. Since last July, I’d had chemotherapy, major surgery involving a mastectomy, immediate breast reconstruction and axillary lymph node clearance, and finally, radiotherapy. Less than a month after I’d had surgery, my dad died. His funeral was in Glasgow on 1st February, I came back home to London on the 3rd and started radiotherapy on the 4th.

The day of that final session was an emotional one. I’d been in tears within seconds of waking up, from relief at having got to this point. I’d been expecting to burst into tears the second my last radiotherapy session was over but I was distracted by the radiographers chatting to me about how I felt the sessions had gone, asking about my plans for the rest of the day, getting me to sign the treatment completion form, warning me that the side effects from radiotherapy can continue to happen for another couple of weeks and giving me a leaflet about finishing treatment. My composure didn’t last long, though. I’d to have dressings reapplied to where my skin had reacted badly to the radiotherapy and I started to lose it as I walked from the radiotherapy suite over to the treatment room. Once inside, I sat down on the nearest chair and out it came. The tears only lasted a minute or two and I think I can be forgiven for feeling somewhat overwhelmed by the occasion. The radiography assistant who applied the dressings was very understanding. I guess they’re used to it.

There were more tears throughout the day when the enormity of what I’d gone through would hit me or I’d think of how different the day would have been if my dad had been around to share it.

I’m glad I waited a while to write this. I look back now and recall a lovely day. Cycling back from my appointment in the sunshine later that morning (Bike 8 – Car 7. Victory is mine.), I remember feeling immense gratitude towards everyone involved in my treatment. Just as I got back home I bumped into a neighbour I hadn’t seen for a while and we’d a bit of a chat. I got a massive hug from our cleaning lady. I had lunch with my tennis buddies, tea later in the afternoon with some good friends and lots of people got in touch to say congratulations. Andy, the boys and I finished the day off with our traditional celebratory family meal. You know the one (More good news)… lasagna, garlic bread and salad. This time the champagne was better than usual. We toasted ourselves and we toasted my dad.

In the end it was a day of huge relief and quiet celebration. It’s a day I won’t easily forget.

 

Feeling a million times better than this morning, but what a struggle

I’ve just had lunch, and before that the physiotheraptist and I went for a spot-the-Christmas tree walking tour of the corridors of the ward. I walked unaided.

You did what?!, some are you are no doubt thinking. Well, it was in the plan to be up and walking about on Day 3 so things are just going to plan. Really, I’m no hero. However, if you’d seen me a couple of hours earlier, you’d never have thought me capable of such a thing. At that time I was honestly thinking that this part of the “journey” was much worse than anything I endured during chemo. I’m not going to bore you with the details but several taxing events happened this morning (some of which now don’t seem so taxing; it’s always the way) and I was really feeling there was no way I was going to get home this year, never mind possibly this week.

I was feeling so down that I texted my two sons who were about to leave the house to come and visit me to tell them not to come. That’s how bad it was. They’ll come later with their dad.

So what else can I do now that I couldn’t do when I woke up this morning? Most importantly, I can get out of and back into bed on my own (although I’ve only been back in once as I’m spending the day in the chair and keeping myself mobile by moving around the room from time to time). I can lift the water jug and tea pot and pour my own water and tea (so much less calling on the nurses), and I can go to the loo (the catheter came out this morning). And I’ve just leant down from the chair and picked something up of the floor, which would have been unimagineable yesterday. And obviously, I can now walk unaided.

Things are very tight round the abdomen join but I’m trying to stand up a little bit straighter every time I stand up. It is not easy.

Two drains came out yesterday. I still have two in, one in the underarm and one in the abdomen. The fluid drains into little bags and you carry those around with you in a plastic bag when you go walkies. You only forget you’re attached to them once.

So, massive strides today, but this morning was tough. With hindsight I probably took the setbacks harder than I needed to or should have, but it was what it was.

As for this afternoon, I’m off for another walk around the room, a friend is due to visit and then I’ve got a few episodes of Desert Island Discs lined up to listen to. 🙂

Sorry, but I have to disagree with Victoria Derbyshire

BBC television presenter Victoria Derbyshire is back at work having had a mastectomy on 24 September. That’s great and, like everyone else, I wish her all the very, very best.

Victoria recorded a video diary from her hospital bed just hours after her operation. I know I wasn’t the only one who felt uncomfortable when I saw her holding up one placard saying “This morning I had breast cancer” followed by another that said “This evening I don’t”.

You’ve got to admire Victoria for doing the diary but my immediate thought was “that’s not how it works with breast cancer”. There’s no guarantee you get rid of your cancer by having a mastectomy. There’s always the possibility that some cancer cells have been left behind near the site of the original tumour or have escaped from the site where the cancer started and are on their way through the bloodstream to somewhere else in the body where they could grow and cause new tumors.

That’s why for many women diagnosed with breast cancer surgery is just one step on a long journey that involves a range of tools aimed at getting rid of the cancer and reducing the likelihood of it coming back. Those tools can include combinations of surgery, chemotherapy, radiotherapy, biological therapy and daily hormone treatment for up to ten years after surgery… with accompanying side effects – physical and emotional – at each stage of treatment.

So I’m in the same camp as Catherine Pepinster, a journalist like Victoria (and me), and who, again like Victoria and me, has personal experience of breast cancer. I’m with Catherine in wondering whether Victoria’s reaction to cancer treatment sends an over-simple message.

Sure I agree with Victoria that having cancer is “manageable” and that having a mastectomy is “totally doable”. Thousands of women “do” mastectomies every year – it’s not like they have much of a choice – and everyone who has cancer – breast or any other type – manages it as best they can. But manageable and doable don’t mean easy. My own mastectomy isn’t until December or January but, like everyone else,  I’ll “do” it as best I can.

I do agree wholeheartedly that you don’t “fight” or “battle” cancer, you just have it and deal with it.

If breast cancer is caught early enough, you treat it and, yes, you might get rid of it. Even if it comes back down the line, it may not be curable but it is treatable. But it really isn’t a question of having it one day and not having it the next.

Stopping the downward spiral

I was planning to start this post by saying that once you’ve got a breast cancer diagnosis, it’s at the back of your mind all the time. But as I wrote it, I realised that wasn’t true. It’s actually at the very front of your mind most of the time. You think of little else. Something will distract for a while and then, wham, it’s right back again.

The daftest things cross your mind. Take my ski boots. Last winter, after renting skis and ski boots twice every season for more than ten years, I decided to buy my own boots. Now I’m annoyed I won’t be using them this coming season (it’s likely I’ll have the mastectomy and full lymph removal in January) and I can’t help thinking I was somehow tempting fate by buying them. I go skiing with some girlfriends and we book our flights eight, nine or even ten months in advance. How presumptuous, I now think, ignoring the fact we’ve done the same thing for the past nine years and it’s been fine.

And in the changing room at work the other day after I’d cycled in? There was another woman getting changed too and, as I whipped off my sports bra, I found myself wondering whether I’d still do that post-surgery or whether I’d feel I needed to go into a cubicle to get changed. And then that gets you thinking about how long it’ll be before you’ll be able to cycle into work again after surgery. And then about how long will it be before you’ll be able to do another 63-mile bike ride, like the one you did with a friend the day before the appointment where you asked your GP to check your breast.

I know how destructive worrying about the future can be, but by now you’re in a downward spiral, thinking the worst. You start wondering whether, after surgery, you’ll ever be able to do a long bike ride or play competitive tennis again, or indeed play tennis at all. The same with skiing. And then you force yourself to snap out of it because you know that what matters for now is treating and getting rid of the cancer, not what you will or will not be able to do physically once you’ve done that.

The only thing that really matters is getting better.

It’s ok to cry

I’m the kind of person who can start watching a sad movie half way through and be in floods of tears ten seconds later. So there were always going to be lots of tears around a diagnosis of breast cancer.

I was diagnosed just before we were due to go on holiday, to Greece. The consultant told us to go ahead with the trip if we thought we could manage emotionally. I didn’t really consider not going as we all – our two teenage boys  especially – had been looking forward to it so much. My husband told me later he had serious doubts but kept them to himself.

We decided not to tell the boys until after we got back, and set off.

It was a fantastic holiday but during the first few days I’d well up at the drop of a hat. Just looking at my husband or the boys asking a question about the future was enough to set me off. And you’d be amazed how often they ask about the future. “Will you be working from home when we get back or will you be going in to the office?” “Can I have a party in September?” “Are we going skiing next year?” And there were lots of questions about the London to Brussels bike ride that I’d been due to do in September and that I knew I wouldn’t now be doing.

A couple of days in we managed to relax… until the last couple of days when I got very tearful again, thinking about what we were going back to.

Keeping it from the boys was hard. I did have to wander off quickly or bury my head in my Kindle quite often. Telling them beforehand would have ruined the holiday for all of us. Also, we had an important appointment with the consultant the day after we got back where we were to get lots of information and I didn’t want to tell the boys and not be able to answer their questions. I knew I’d cry telling them. That was a given; I cried even at the thought of telling them. I was ending their innocence. My feelings of guilt and sadness over that were sometimes almost overwhelming.

I cried telling my boss at work; I cried telling my deputy; and I cried telling other close colleagues. I cried telling friends. Each time I did deep breathing exercises beforehand and practised what I’d say and was convinced I’d be fine but it was no use. I think I managed to hold it together when I told my mum and dad and my five brothers but that might not be true.

I have a feeling I’d better get used to it. But that’s ok. There really is nothing wrong with crying.