Saying it like it is

From a living your life point of view, the past six weeks have been fabulous. On the cancer and related general health front, they’ve been much less so. It’s getting increasingly difficult to separate one from the other.

We went on no fewer than three trips, one by train and two by car.

We visited some beautiful parts of England. We did lots of sightseeing. With friends or on our own, we went to museums, art galleries and exhibitions. We visited various sets of friends and relatives, some of whom we hadn’t seen since just before the start of the coronavirus pandemic in March 2019 and some of whom we hadn’t seen for many years. We helped our younger son move into his third year accommodation at university in the city of Leeds in the north east of England. 

Back in London, I continued to meet up with people – current and former work colleagues, my brother and nephew who were down visiting from Scotland, and a group of women from BellaVelo, one of the two cycling clubs of which I’m still a member, despite not having cycled with either of them for a very, very long time.

As you may be able to tell, I did not do much work in June.

That’s a synopsis of what’s been happening over the past month-and-a-half in that part of my life over which I have control. Now here’s what been happening in the part over which I have little control*.

I had two blood transfusions in the space of just over five weeks, each prompted by falling haemoglobin levels.

My most recent blood tests showed a substantial rise in my tumour marker level, meaning there’s been an increase in cancer activity.

The implication of the above is that the metastatic breast cancer that’s in my bones and has infiltrated my bone marrow has not responded to the treatment I started just over two months ago. My next set of scans – a half-body combined PET CT scan and an MRI of my spine – is therefore being brought forward as we want to try to determine whether the cancer has spread.

If the scans show signs of progression – or even perhaps if they don’t but the tumour marker level is still markedly rising and my bone marrow is still struggling to produce healthy blood – I will move on to the next line of treatment. This would be my fourth treatment since I was diagnosed with advanced breast cancer just over two years ago. It would be iv chemo, with all of the associated additional and potentially lengthy treatment sessions and toxic side effects, including hair loss. I am really, really, really not ready for any of that. Also, with each new treatment you start, you can’t help but be aware that you’re one step closer to running out of options.

But let’s not pre-empt things. Who knows what the scans will show?

Back to the tribulations of the past six weeks.

I had another round of treatment-induced mouth sores. However, I’ve been totally clear of these for the past few weeks, which is a huge relief. You can read in previous posts how painful these were.

Another side effect of one of the drugs I’m on is night sweats. I’ve been having these on a regular basis, although not so much in the past week or so. When they happen, it means: 1) having to change your nightwear in the middle of the night; 2) changing the bed sheets the following morning; and 3) depending on how wet the sheets are and what time of the night it is, moving to the bed of the son who at the time was still away at uni and trying to get back to sleep. My oncologist and I agreed that for someone such as me who pretty much sailed through the menopause, this is a particular affront. I’ve had more night sweats in the past two months than I had during the whole of my menopause.

I had a slight temperature over the course of a couple of days and at one stage I feared it might jeopardise a much anticipated trip to Wales and Manchester. It was fine in the end but there was a fair amount of anxiety involved.

There’s more.

I wouldn’t go so far as to call it a nose bleed, but one morning there was blood rather than mucous on the tissue when I blew my nose.

That kind of freaked me out as you’re advised to “seek medical advice urgently” if you develop “gum/nose bleeds or unusual bruising” (see photo). I duly called the emergency number I’d been given and spoke to one of the oncology nurses.

The nurse asked me lots of questions, after which her reassuring advice was: “Monitor it and call us again if it gets worse.” Thankfully it didn’t and all was ok. So off I went to an arranged lunch date with two friends – women I’d met at antenatal classes 23 years ago but hadn’t seen for several years.

I’ve also been having dental problems – not quite pain but certainly discomfort in a couple of teeth. Tooth or gum problems ring pretty loud alarm bells in people such as me so I reported the discomfort to the cancer nurse specialists who work alongside my oncologist. An appointment was immediately made for me at the specialist dentistry department at the hospital where I’m having my cancer treatment.

I was given an extremely thorough dental examination that involved among other things tooth sensitivity testing and x-rays. Nothing of concern was found. The discomfort remains. I’m to be seen again in three months’ time, or sooner if it gets worse. In the meantime, I’ve been referred to the hygienist for a deep clean (my own words there).

Zometa (zoledronic acid), the bone strengthening drug I currently have via infusion over 15 minutes every four weeks, helps prevent skeletal related effects of the cancer such as bone fracture, pain and subsequent radiotherapy, and spinal cord compression. It’s one of a group of drugs called bisphosphonates that, unfortunately, come with a small risk of a nasty condition called osteonecrosis of the jaw, or ONJ – a rare but potentially debilitating condition in which bone tissue in the jaw is no longer covered by the gums and starts to die.

ONJ symptoms can range from very mild to severe. It can cause tooth or jaw pain and swelling in your jaw. Severe symptoms include infection in your jaw bone. You can get ONJ after dental procedures, such as extractions. The healing process after such procedures may take a long time or may not happen at all. That’s why everything possible is done to avoid the need for tooth removal in patients taking Zometa or denosumab (Xgeva), another drug used in this setting. That’s why my report of dental problems was taken so seriously.

Your risk of ONJ increases the longer you’re treated with bisphosphonates or denosumab. I’ve been on either Zometa or denosumab since my secondary diagnosis. In addition, I was on Zometa periodically for some time after my primary diagnosis as there’s some evidence that, in post-menopausal women, it can reduce the risk of breast cancer coming back.

Given all of the above, I’m taking a break from Zometa this month to see whether it makes any difference with regard to the discomfort. And I guess, in case any dental treatment were needed.

I was impressed that an appointment was found for me so quickly. However, it was on the morning of the day we were setting out on our Wales/Manchester adventure and I spent a fair amount of time worrying about whether we’d make the train. We did make it, and it was the loveliest of trips, despite my teenage goddaughter in Wales beating me at chess in an agonisingly slow game that lasted the best part of two hours. We’re evens now, but I will endeavour to rise again!

I mentioned in my last post that I had started once again to have sore feet at night, yet another side effect of one of the drugs I’m on. I suffered badly from this under my previous drug regime and while it’s not as bad as it was then, it’s no fun. Now as then, it’s exacerbated by exercise that puts pressure on the feet, such as running or long walks. Cold, wet towels to wrap round my feet in the middle of the night when the discomfort is stopping me from sleeping are once again a feature.

I’m not so bothered about running, having proved a point by completing a 5k just recently. Stopping walking or only walking for short distances, however, is not an option.

Had I not been prepared to walk on the various trips we’ve just been on, it would have meant not traipsing round and enjoying the northwestern city of Manchester for hours and hours and hours over the course of a couple of days with friends from London.

It would have meant missing out on wandering round the Yorkshire Sculpture Park, south of Leeds. This has been on my to-do list for ages and it didn’t disappoint (couple of photos here as evidence).

It would have meant not exploring the pretty village of Hathersage in the Peak District.

And it would have meant not walking round Sherwood Forest near Nottingham or visiting the small but super interesting Civil Wars Museum in Newark.

For the moment, I’ll take the sore feet. It’s a price worth paying. They’re not likely to get any better under the next treatment. Hopefully by adding painkillers and/or sleeping tablets to my arsenal, I’ll get by.

On top of all that, the wound on my lip from the horribly painful and ugly cold sores that I had earlier this month is taking forever to heal.

The cold sores appeared over a month ago, triggered by a bike ride in the sun (see photo) on the first of the three trips.

One day recently, my lip looked so awful that I almost called off a brunch date with a very, very good friend and her husband. I’m so glad we went in the end. On another occasion, the wound started bleeding when we were minutes away from the house of some old friends we were going to visit. I burst into tears from sheer frustration. We stopped the car and waited til the bleeding had stopped and I’d stopped crying before continuing.

While we’re on the subject of wounds, the one on my right calf that was healing so well opened up again, stopping me from exercising at a time when my feet were still fine. Is that ironic or just Sod’s law? The wound has almost cleared now.

Finally, my finger nails are getting ever softer and weaker and in some cases are lifting off the nail bed. As for my hair, when I find a knot and try to tease it out, sometimes a whole clump of hair comes out.

I started this latest treatment – a combination of two (non-chemo) drugs, everolimus (Afinitor) and exemestane (Aromasin), taken in tablet form, once daily – a little over two months ago. At my latest appointment with the oncologist, we agreed that I’d stay with it for a third, 30-day cycle to give it a proper chance to work. I agreed to stay on the highest dose of everolimus, despite the problems I’ve been having with mouth sores. The rationale is that we need to give the drugs the best chance of generating a response. I find it rather ironic that I’ve not had any mouth sores during this third and possibly final cycle.

So there we are, just saying it like it is.

I initially thought of having a photo of me having a blood transfusion at the hospital as the final image in this post. How much nicer, though, to use a photo of some of the beautiful roses that we are so lucky to have in our garden. Or rather had in our garden until the rain of the past few weeks came and ruined them!

Let’s see what the next few weeks bring on the health front.

What is certain is that there will be multiple trips to the hospital. Thank goodness I only live a couple of miles away. As it stands, I have six appointments for one thing or another over the next two weeks alone. The first of these was this morning, for blood tests to see how things were looking after the transfusion I had ten days ago. I had blood taken then waited for the results with the cannula in “just in case” I needed another transfusion. I didn’t.

Another certainty is my birthday, next weekend. I’ll be 58. I’m still standing.

*I also have increasingly little control over the lives of our 20 and 22 year old sons, both of whom in the past four or five weeks have had and, thankfully, have also recovered from Covid.

Salted peanuts, citrus fruits and vinegar – they’re all back on the menu!

I am both relieved and happy to report that the two dreadfully painful mouth and tongue sores that I’d had for the past couple of weeks have gone.

The sores were a side effect of one of the two new drugs that I started taking just over three weeks ago for the secondary breast cancer that’s in my bones and bone marrow.

I made it very clear in my previous post just how awful these sores were. These past few days, though, I’ve been eating salted peanuts again – a favourite snack to accompany a pre-dinner drink. Not just that, I had an orange earlier today for the first time in almost three weeks. Finally, I am happy for my husband to start putting vinegar in the salad dressing again! 

Everything is back on the menu. At least it is for the moment. Mouth sores can come and go while you’re taking this drug – everolimus (Afinitor) – so we’ll enjoy this mouthsore-free period for as long as it lasts. I’ve been mouthwashing assiduously with the two rinses the oncologist prescribed for me. I guess I’ll continue to do so as a preventative measure.

Also this past week, I had the stitches taken out from the two wounds I have from the skin lesion removal procedures I had a few weeks ago. The wound on my right calf has healed beautifully but the one on the sole of my right foot has not. There has been a certain amount of discomfort associated with the “non-healing” and it means I’ll be off the tennis courts and off the bike for yet another couple of weeks. 

In case you’re wondering, yes, it was indeed painful having the stitches removed, especially those in my foot. I had to ask the nurse who was removing them to stop two or three if not four times so I could take a breather. In the end, the nurse had to call in one of the doctors – an expert in stitches removal apparently- to finish the job.

How painful was it? Well, as we all know, pain is very hard to measure objectively. However, I suspect that if it had been a person very close to me who’d been having this done, he might have fainted! He knows who he is – it’s not hard to guess his identity! – and he’s ok with me writing that. I did check!

I was due to get the results of the biopsies they did on the removed tissue on Thursday this past week, but instead I got a phone call to say the report’s not available yet.

Away from the medical stuff, we’ve been continuing to enjoy the easing of the pandemic-related lockdown restrictions. 

We’ve been out and about, enjoying the late Spring. Indeed we had a very eventful experience just a couple of days ago, during a trip to the beautiful space in southwest London that is Richmond Park.

I can’t remember the last time I was in the park without my bike; regular readers of this blog will know that it is a great place for cycling.

This time, however, my husband and I were on foot. We were going specifically to see the annual display of camelias, azaleas and bluebells in an area of the park called the Isabella Plantation. (There were lots of other flowers too, but I’m afraid my flower-identifying knowledge is extremely limited.)

Walking though the park after we’d seen the flowers, we came across a family of Egyptian geese.

When we first encountered this charming group, there were eight goslings and the mother was trapped inside a small enclosure in the park (photo on the left).

The father was outside the enclosure, unable to help. Both adult birds were clearly distressed – there was lots of squawking and heavy breathing. 

As it turns out, I was instrumental in facilitating the release of the mother, upon which the family hotfooted it towards the nearest pond (photo on the right). It’s a long story but the “rescue” was enabled by the actions of two helpful but distinctly underwhelmed members of the Metropolitan Police who had the misfortune to be in the area at the time!

The pond was about a ten-minute waddle from the enclosure. We followed, taking photos. It was all very cute and exciting.

A happy ending, you may be thinking. Sadly, it wasn’t so. On the way to the pond, disaster struck! To my horror, a big crow swooped down and snatched one of the goslings. As a result, only seven of them made it to the pond. In just a few seconds I went from feeling like a hero to feeling responsible for the death of a gosling. Nature can indeed be cruel.

As for the flowers in the Isabella Plantation, what can I say other than that they are an absolute delight.

In other developments, we’ve booked another couple of trips away over the next month or so – one to Manchester with friends and one to Wales to stay with some very good friends. We’ll catch up with some relatives while we’re in Manchester and, in Wales, I’m very much looking forward to seeing my teenaged goddaughter. That is despite the fact that she has said that, as well as looking forward to seeing me too, she “can’t wait to beat you at chess”. Mmm.

May 17th is an important day in England in terms of the restrictions easing. Museums and art galleries can open again, you can once again eat inside at pubs and restaurants, hotels can fully open again and you can stay overnight with relatives or friends. I’ve already bought tickets for a couple of exhibitions, one of which I’ll enjoy with an old friend who’s coming to London for the day the week after next. Also, tomorrow evening, I’ll be eating inside, at a (hopefully well-ventilated) pub restaurant, with friends, for the first time since last summer.

I’m well aware that we’re far from being out of the woods on the pandemic front – variants of concern, localised spikes in cases here in the UK, the tragic situation in India, etc. However, I’m determined, safely, to make the most of our newly returned freedoms while we have them. I’d like to have been able not to write the last four words in that previous sentence, but I’m sure I’m not alone in thinking that restrictions will come and go depending on how the situation evolves. That said, I tweeted recently that I intended to “carpe the sodding diem” out of this summer. That’s still my plan, the pandemic and my health allowing. 

I am, of course, also well aware that we still don’t know how much protection the vaccines give to people such as myself who have compromised immune systems. I won’t be diving in for big hugs with all and sundry and I think I’ll be steering clear of full-capacity cinemas and theatres for some time to come. I did feel uncomfortable on the London Underground the other day; while almost everyone was wearing a mask, it was much busier than it’s been in the past few months.

Back to medical practicalities. I’m less than one week away from finishing my first 30-day cycle of this new line of treatment. On Wednesday I go to the hospital for blood tests and a chest x-ray; the latter is to see whether there’s any damage to my lungs (another potential side effect). I see the consultant on Thursday for the blood test and x-ray results and to discuss how things are going.

This latest treatment consists of a combination of two drugs – everolimus and exemestane (Aromasin). I take one tablet of each every day. It may still be too early to tell whether they are having an effect as it can take some time for this to show. Other than the mouth sores, the only side effect I’ve noticed is the odd night sweat, similar to those many women get when they’re going through the menopause. They are not pleasant – who wants to have to change out wet nightwear at 2 or 3am? Finally, I wouldn’t be surprised to hear my haemoglobin level has dropped further.

We shall see. For now, though, I’m off to suck on a lemon.

An update

In the grand scheme of things, I’m quite relieved at the results of my latest round of blood tests.

I met the oncologist earlier this week to discuss the results of the tests I’d had done the previous day. The best I could have hoped for was for my tumour marker to have stayed at the level it had jumped to in December. I figured that was unlikely given that it had risen by a whopping 20% between the November and December blood tests. In the event, it went up by around another 10%.

On the upside, on the blood front things are good. The secondary breast cancer that has spread to my bones has also infiltrated my bone marrow and so reduces my body’s ability to make healthy blood. It was therefore good to hear that my haemoglobin count is up from last month and is again within the normal range, albeit at the very lower end. My neutrophils, while still below the normal range (they’ll never be there again), are 40% up on last month. That means I’m a little better placed to face any infection that comes my way – a positive in the current climate.

Once again, it’s swings and roundabouts. The tumour marker is up but bloods are ok.

With the pandemic still on the rampage, every effort is being made to minimise the number of trips patients on treatment make to hospital. For example, every other appointment with the consultant over the past nine months has been on the phone rather than in person. In fact, I may have had more over the phone than not. Some people don’t like this way of communicating but it’s fine by me. In addition, for my next two rounds of treatment, I’m going to self-inject at home the bone strengthening drug (denosumab/Xgeva) that I have at the start of every new cycle. It’s usually done by one of the oncology nurses at the day treatment unit at the hospital. I did it myself last month at the unit under supervision and that too was fine.

The fact that the marker is going up indicates that there is increased cancer activity somewhere in my body. That’s what happens with secondary cancer. It eventually outwits every possibly treatment. While these latest results were far from disastrous, you do have to be practical. The oncologist therefore discussed with me what drug(s) I might move onto if the scans I’m to have in seven weeks show signs that the cancer has progressed to the extent that we need to change to another treatment. The scans could show any number of things. While you can’t predict a precise course of action in advance as you don’t know what you’ll see, you can be thinking of what might need to happen under various scenarios.

The discussion was quite sobering. But let’s not pre-empt things. That decision – if indeed a decision needs to be taken – is eight weeks away. In the meantime, I carry on with my current treatment and just get on with things.

One of those things is reporting my health status daily on the Covid Symptom Study app – covid.joinzoe.com – that is used to study the symptoms of COVID-19 and track the spread of this virus that is causing such devastation and unimaginable heartache to so many. (On a personal level, next week will see the funeral of a good friend’s husband who died from COVID-19 just after Christmas. His death was heartbreaking on many levels.)

It seems heartless to carry on writing about my own experiences having just written those previous two sentences, but the case is that I reported having a runny nose on the Zoe app, as it’s known, one day last week. While a runny nose is not a symptom of infection with the virus, I, together with any other household members, was “invited” via the app to take a test. It was all very efficient. The test kits were delivered the day after we requested them, we posted them back the following day and got the results – negative in the case of both myself and my husband – 36 hours later via text and email.

I reckoned the results would be negative but, with transmission rates as high as they are, you can obviously never be sure. Our two boys are back at uni and so it’s just my husband and me in the house. I work from home so it’s been a few weeks since I’ve been out for anything other than to exercise or attend hospital appointments. In my husband’s case, it’s for exercise or shopping. I now exercise on my own; I’ve even stopped the walks with friends that had become such a regular and welcome feature of life.

I’m feeling well on the whole and another thing that I’m doing now that I don’t meet up with friends for walks is go out almost every day either for a run or a bike ride. The reason is that I have signed up to a bit of a mad challenge that involves running and/or cycling a total of 192 miles between the beginning of January and the end of March. I could do it all on the bike but I’ve decided to do as much of it as I can on my own two feet rather than on two wheels. Running is so much more challenging than cycling, at least it is for me given the pace at which I cycle. I run incredibly slowly but I guess it still counts as running in that I do overtake people who are simply walking!

There’s no way I’d be running if a friend hadn’t suggested we both sign up for this challenge. Even after having signed up, I’ve had to come up with an incentive to get me out running. I wanted to listen to Transmissions, a multi-episode podcast that I’d heard was really good – about the iconic Manchester bands from the 1980s, Joy Division and New Order. I decided I would only listen to the podcast while running. It was a good plan and it works both ways. I’m loving the podcast so much that I go out running so I can listen to another episode and listening to the podcast makes the runs easier.

This has been a good week for running. I’ve got the week off work, so I’ve got no excuse really. I’m in the category of people for whom work has never been busier and I worked part, if not all, of each of the four working days between December 24th and 31st. It has been so relaxing to have a big chunk of time off. The house is very quiet now that the boys are away again. We had a lovely Christmas together. It’s usually just the four of us anyway on Christmas Day so in that sense at least it wasn’t so different from other years.

The photo above on the left is of me on the 25th, relaxing on the sofa with two of my presents after an almost two-hour spin on the bike – out to Richmond Park, a favourite destination around seven miles away.

The photo on the right was taken in our garden by my husband not long after the bells on New Year’s Eve.

Hogmanay, as we Scots say, normally makes me feel quite melancholic. This year, though, presumably because of all the sadness that 2020 held, it felt important to celebrate and look forward – both because of and despite what the future may bring.

Relax, honey, you’ve passed

This post is in praise of the man who is still making me laugh after some 35 years of partnership.

My previous post was about how a diagnosis of an incurable, progressive, disease gives you an opportunity to reflect on life. Well, this is me reflecting on my relationship with my husband and best friend.

Like any couple who’ve been together for a long time, we sometimes drive each other nuts and bicker over silly things (or is that just us?). On our recent trip to Jordan, we’re wandering round the incredible Roman ruins of Jerash in the north of the country, and I jokingly tell him off for some ridiculously minor infraction.

Jerash

In response, he quips that sometimes he feels he’s still on probation. He smilingly says he’s worried that one day he’ll find out he’s failed and I’ll tell him, as we say in my native city of Glasgow, to “sling his hook”.

This has me doubled over laughing. It makes me laugh every time I think back on it.

We’ve been together essentially since we were 21. We survived living in different cities and indeed in different countries for several years early on. We got married two children and 20 years into the relationship – almost 16 years ago – and he was the one who joked in his speech at the wedding that it had taken him nearly two decades to be sure he’d made the right choice!

The idea that I’ve yet to decide whether he makes the grade is hilarious. As he knows very well. At least I think he does. Just in case, though, I’d like to say for the record that this man who is still making me laugh out loud 35 years on has indeed passed his probation. What’s more, he’s done so with flying colours and deserves the highest distinction going.

Reading Unsheltered in the Dead Sea

Part of the trick to a long relationship is being willing to say sorry quickly after a falling out. It has to be said that it took both of us some time to learn this – and I confess it took me longer than it took him. On holiday, I read Barbara Kingsolver’s latest novel, Unsheltered. In it, one of the main characters says that sorry really is “the word that could never be said enough in the space of one marriage.” I think most people would agree.

Now bear with me on this next part, there is a point to it.

Recently, I’ve increasingly taken to making sure my boobs look level when I’m wearing tight-fitting clothes. When I had my right-side mastectomy in December 2015, I had a reconstruction made out of fat taken from my belly area. The radiotherapy I subsequently had robbed the reconstruction of its elasticity – it’s a known risk – with the result that the right one looks pretty much the same now as it did four years ago and the other one, ie the real one, well, doesn’t. Nature, shall we say, has taken its course. (You are allowed to laugh; we do.)

These days, therefore, it takes some readjusting when I get dressed to get that sought-after “in-bra symmetry” look.

That photo!

Anyway, back to Jordan. It’s late afternoon and we’re wandering through the spectacular archeological sandstone site of Petra. The light is beautiful. He takes a photo of me at the entrance to a cavernous tomb. “That’s lovely,” he says, “I’ll post that.” It’s a close-up, and it’s going on social media. I ask, almost instinctively, “What do my boobs look like?”

What I mean, of course, is do they look lopsided or uneven in the photo? He, very deliberately, looks at my actual chest and replies with a smile, “under the circumstances, not half bad”. We both know what he means and, again, it has me laughing for ages.

I could have kept all this to myself. Shortly after our holiday, however, I happen to find myself listening to the first album in 17 years from Tanya Ticker, one of my favourite country singers from back in the day. There’s a song on it called Bring my flowers now (while I’m livin’).

You may not know this, but I am a huge country music fan. With song titles like that, how could you not be?

Anyway, the song is basically about how if you’re fortunate enough to have people in your life that you cherish, you should let them know that you appreciate them while you have the chance. Because guess what, folks, as Tanya Tucker tells us in the song, “We all think we got the time until we don’t.”

She sings: “Bring my flowers now while I’m livin’. I won’t need your love when I’m gone. Don’t spend time, tears and money on my old breathless body. If your heart is in them flowers, bring ‘em on.” Fantastically schmaltzy, even for country, but a great sentiment. You don’t have to be a rocket scientist to see how those lines hit a massive chord with me.

I’m the one with the incurable illness – secondary breast cancer – and you might think that my drawing attention to this song is to encourage those people who cherish me to let me know they do. In that regard, any of you reading this are indeed very welcome to “bring my flowers now” whenever and in whatever way you want. This post, though, is for my partner, who reckons that under the circumstances, we’re doing not half bad. I couldn’t have put it better myself. This is me bringing him his flowers now. I’m lucky to have him.