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.
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.
6 thoughts on “Saying it like it is”
You are sure going through the ringer at the moment. I’ll keep you in my prayers that things improve and you get the best treatment there is. Thank you also for your candid report and how’s things are and I hope it helps you to deal with all this. Sending you best birthday wishes and hope you get to celebrate in style.
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Thank you, Ailish.
This may not help, but it might. I bought a nightie from Become. It doesn’t stop night sweats, but it does stop that post-night sweat clammy temperature drop. They are marketed for menopausal women – I have found it really helped when I was on oestrogen blockers and getting night sweats. Might be worth a go?
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Thank you so much for the tip. I may well give it a try. x
Thanks for the update, a right mixture of events, emotions and physical challenges.
Keeping you in our thoughts and prayers.
Big hugs and lots of love.
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Thanks for the update & glad to hear you’ve been able to get out & do loads of fun things in spite of the crappy stuff. You’re always in my thoughts – sending you lots of love! Karen xx