This hormone positive cancer is a funny ol’ business and I have found it particularly tricky to negotiate the medication side of things. Initially I was prescribed Letrozole and what fun we had together! Joint stiffness and muscle cramping were just the start. Since a change is as good as a rest Brainy Spice and I decided try both a break for six weeks and then changing to Exemestane. My problems got steadily worse. The joint pain and muscle cramps were, at times, crippling but by far the worst was the way it messed with my head. I was not sorry to say goodbye to that.
So what now? Since January I have been taking Tamoxifen. There are still issues but things are much improved. But dealing with the fabulous, gorgeous, and beautifully warm weather we’ve been having has been, erm, interesting! My biggest issues are with hot flushes, sweating, muscle cramps, and insomnia and this is how I have been managing them.
Clothing: I have mentioned before that my clothes have been on and off me faster than a sex worker’s and this remains true. So my first tip is to wear nothing that cannot be rapidly ripped off as soon as your temperature goes up. Layers. Layers are the thing. And natural fibres. None of your spandex or nylon, thank you very much.
Fans: no, not an adulating crowd. Rather, a small hand held electric fan. I got mine from Amazon and love it because it is rechargeable! Concertina fans are great too and easy to carry in a handbag.
Chillow: this is a cooling pillow to slip in your pillow case for those unbearably hot nights. Bliss. Also handy for managing migraines if you happen to suffer.
Auricular Acupuncture: I had a course of this as soon as I started on Letrozole and then a couple of top up sessions last year. This worked really well to begin with but sadly, since Tamoxifen was the new kid in town, I have not noticed a difference. But I would definitely recommend it as I had twelfth months of relief that I suspect can be attributed to it.
Shade: seek it out wherever possible as it still allows you to be out of doors, topping up your vitamin D levels, and enjoying the sunshine without feeling like you are turning into slow roasted joint. Or a carbonised kebab.
Pills: the thought of yet more medication was not appealing, but thanks to the head messing that Exemestane had done, I was already taking the antidepressant Sertraline. The wonderful Doc suggested I switch to Venlafaxine as it was known to help reduce hot flushes by up to 50%. Sounded good to me and I can honestly say it has been incredibly effective.
Ice: in your drinks. Especially gin and tonic. In all seriousness, alcohol is something that may make your hot flushes worse. But I decided life was too short to give up on it entirely.
Clothing: as above but when it comes to night sweats, besides the chillow, my best advice is layers of bedclothes that can be easily thrown off and frequent changes of sheets.
Make up: I have pretty much given up wearing skin make up after it slid off my face within ten minutes of application once too many times. I still use eye make up and lippy but that’s all these days. The ‘au natural’ look is definitely the best one for those inclined to a sweaty face (*puts hand up).
Lens cloth: thanks to regularly steaming up my glasses with hot flushes and sweating, I generally carry around a lens cloth.
Ice: in your drinks. Especially gin and tonic. Have I mentioned this before?
Exercise: bit of a dirty word for me but frankly I should just get over myself. Because on the days when I have done more than just lounge about, I definitely have fewer problems with cramping. Either a short energetic walk or a longer more ambling stroll works wonders.
Fluids: drinking plenty and keeping hydrated also seems to help. I tend to drink a lot of water anyway but on the days when I have less, again, I notice the cramps are worse.
More pills: Quinine, to be precise. I am not taking it daily, rather I take it as and when I need it on the advice of my GP. Since taking it I have fewer nights when I am leaping out of bed with leg cramps.
Tonic: forget the other drinks. Tonic has quinine in so it’s basically good sense to drink it. But it would be rude not to add gin.
Audiobooks: I have always been prone to insomnia but Tamoxifen or Venlafaxine have taken it to a whole new level. Chemo also left me with tinnitus. To combat the tinnitus while falling asleep I started listening to audiobooks. It is delightful. Just like having a bedtime story read to me as a child. The upside of this is always having something to play when I surf the night on the surface of sleep rather than sleeping soundly. Now I find I can tolerate periods of wakefulness with far greater peace.
Exercise: that old chestnut. Again. But it does work. I definitely sleep better for a good walk in the fresh air.
Windows: sleep with them open! Earplugs are a godsend if your neighbourhood is noisy.
Time: you have more of it for your gin and tonic so it’s not all bad!
I am sure there are other tips I have missed but these are the things I find most helpful. With all this, I have not yet found the sunshiny weather something to dread. Something to manage, yes, but it is manageable.
Yesterday found me once more at the Breast Clinic. My Letrozole holiday was over and it was time to shake the sand out of the hormonal sandals and review where we were at. Brainy Spice was as fab as ever. The news in was that all my muscle cramps have vanished but my hips are still stiff. It was enough of an improvement for Brainy Spice to suggest a change. So I will be starting on Exemestane just as soon as the pharmacy has made up my prescription. As with all these drugs, the side effects are very jolly sounding but needs must so I am hoping to be one of the lucky ones.
In other news, my relative quiet on here has been reflective of sheer busyness elsewhere. I am recovering with great alacrity and feeling better all the time. My newly trimmed rack is simply marvellous and I am loving the lack of shoulder and back ache! The Captain and I are poised to take to the waters next week and will be peddling our wares at a canal near you very soon. Expect photos of our new Breast Cancer Care jam to follow in another post.
Otherwise, I think you can take the infrequency of my posts to be very good news indeed. Life is happening. And it is good.
There are two things I have been getting up to without telling you. Both relate to my recovery. Both are about progress. I hope. Both exhaust me. But so does getting out of bed so that is not news.
First up, is Breast Cancer Care’s Moving Forward Course. As I approached the end of my chemo I had a sort of mental tick list of Things to be Done. And this was on it. I did not stop to consider whether or not it would be beneficial. I just signed up assuming it would be. I am now half way through the four weeks. For the past two Monday mornings I have been found in the building where most of my midwifery theory was delivered. It is more than a little strange being back there, especially under such differing circumstances. So far, I am not sure I have learned anything new. For me, the benefit has been to be in room with nearly twenty others who have been treated for primary breast cancer. We are all at differing stages of recovery. I think I am the most recently out of chemo, most seem to be about a year on from active treatment. The best moments are when one person voices a concern or expresses an opinion and a ripple of recognition or agreement trickles round the room. We have much in common.
Secondly, I have been tackling my hot flushes. Or rather, my hot flushes are being tackled for me. Remember the lovely Complementary Therapy team that I had been referred to? From them I received reflexology treatment during each chemo cycle and it was wonderful. Having completed that, they then signed me up for Auricular Acupuncture to treat my hot flushes which are still a sight to behold. At times, my glasses steam up, such is their force. Auricular Acupuncture has a good reputation for treating hot flushes so when I trotted along for my first session on Wednesday, I had high hopes. There were four of us being treated and we were arranged in chemo style recliners before having both ears stabbed with five needles. The initial discomfort soon wore off and the next thirty minutes floated by in a dim lit haze to waft-y pan pipe-y music. Keeping my eyes open at the end of the session was harder than usual and I foresee sleeping overcoming at some point during the next seven sessions. Already though, I have noticed a difference. I have still had some ferocious flushes but overall they have been far less.
My only other news is that I am tireder than a tired thing popping tired pills at the Tired Olympics.
This visit to The Doc I remembered to bring the card. He roared with laughter. Always good to start with belly laughs, I feel.
On the whole, the visit was not the best. It is always lovely seeing The Doc but the news from my DEXA scan was not good. I had suspected it might not be but it exceeded my expectations. I have osteoporosis. Oh goody. I come from a long line of women with osteoporosis so it really should not have come as a surprise. Quite why it did I am unsure. Perhaps surprise is the wrong word. It is too gentle. Those of a delicate disposition may wish to close their eyes for a minute. Basically, this news fucking floored me. I fell apart. Not on The Doc, you understand. Oh no. I was absolutely the perfectly poised patient capable of competently coping with even the most devastating news. And let’s face it, in the grand scheme of things, lacy bones are not the end of the world. Driving home it was another matter. I had not had a particularly good day up to that point already. So driving home with tears coursing down my cheeks seemed like a good idea. Not sure the other drivers agreed but what care I for that?!
To look at this in a Pollyanna-ish way, without breast cancer I would not have discovered this for some years, possibly until I fractured my spine or something equally unpleasant. Also, it is treatable. It means the bone sucking Letrozole will be administered alongside vitamin D and calcium supplements and I will be started on bisphosphonates. This is good news in many ways. Bisphophonates were recently linked to preventing secondary breast cancer in oestrogen receptor positive post menopausal women so obviously being automatically prescribed them is excellent. They are the routine treatment for osteoporosis and both my mother and an aunt have been taking them for years. Of course there is a downside. They are notorious for causing gut irritation which should be interesting with my gastro-oesophageal reflux disorder but can be given IV if necessary. What larks!
All of this is going to be administered and overseen by my GP rather than The Doc and to that end he has given me a handwritten letter for her and I am dismissed until October 2017 when I will be re-scanned and reviewed by him afterwards. I shall miss our three weekly chats but it is progress. And to that I cling.
Each time I have visited the oncology clinic I get weighed. I am not entirely sure why this. I know in theory it is because drugs are assessed on body mass but in reality this is not what happens. As a six foot woman I take the same amount of antibiotics or analgesics as my five foot three inch mother or the six foot three inch Captain. And sure enough, despite a steady weight gain throughout this process, my drug dose has stayed the same. Not that I am complaining. Well, not about the unchanged drug dose at any rate.
The weight gain, however, that is an entirely different matter. I have averaged a gain of two kilos per cycle. If this carries on I shall have put on twelve kilos by the end. Or nearly two stone. To put it another way, I shall be the size of a substantial dwelling. Think ship in full sail. Think barrage balloon. Think beached whale. I was not exactly thin at the start of this. The ‘comfy’ clothes I bought in preparation are no longer quite so comfy. That post chemo diet is beginning to look mighty attractive. Incidentally, I know there is little I can do about the weight gain. It is beyond my control. I am subject to appetite increasing drugs, food fads and altered taste buds which make the whole eating experience a real roller coaster. It is something I am resigned to. But I do not like it.
This is most unpleasant aspect of my visits with The Doc. This time we shared greetings from mutual friends, passed round photos of grandchildren and cracked jokes. We also got onto the serious business. He is pleased with my progress though still cringes with each side effect I describe and apologises profusely. He is thinking that post chemo, Anastrozole might not be the best option for me as I have been struggling with joint pain in this latest cycle. Of all the aromatase inhibitors, this one is the worst for joint pain so he is thinking that Letrozole might be more appropriate. And thanks to a family history of osteoporosis he might bung in a bit of Vitamin D and Calcium too. This is all good. Ideally I should avoid all of them but we both agreed that dying of breast cancer would be a far worse option so we would stick with the drugs!
After a couple of phonecalls he decided that the appointments that have finally arrived for the patch testing clinic (to screen me for allergies) need to be delayed until at least four weeks after my last chemo. I must confess to being relieved by this. The current dates are for the week commencing the 3rd October which is only 8 days after my final treatment. The thought of sitting in a hospital waiting room for three days that week was not appealing.
So that was that. I am cleared for the penultimate session. Goody.
It is five weeks since I flushed the last of my HRT tablets. I was decidedly concerned about how this was going to affect me. When I had my ovaries removed at the tender age of 34, my experience of menopause was much like being doused by a heavy and continual downpour of flaming petrol after three days. Three days. So pretty much immediately I was experiencing hot flushes, night sweats, mood swings – you know the drill. I could not wait to get it corrected with HRT. And thank God it was. As the oestrogen in those tablets simply replaced the oestrogen I should have produced normally, my breast cancer is not linked to this at all. Given my previous experience, I was expecting a repeat. I am overjoyed that this has not happened.
However. You just knew there was a however coming, didn’t you?
Me, standing by the bed last night: ‘I am so hot!’
Capt, other side of the room: ‘Yes, you are!’
Me, horrified: ‘Can you feel it from there?’
Capt: ‘No, but you’ve always been hot. It’s why I married you.’
And that, reader, is why I married him! Two days ago my hot flushes began in earnest. My clothes are on and off me faster than a sex worker’s. And with considerably less decorum much of the time. I am particularly pleased with the timing of these symptoms (not). After all, the plastic covered bedding in hospital next week should make the whole experience so much more pleasant. And then there’s Anastrozole to look forward to. Apparently that can take the menopause experience to a whole new level. What larks we shall have!
Since ‘outing’ my cancer I have been overwhelmed by you lovely lot. Seriously. You are fab and I love you all.
Yesterday I had a weepy morning. Then I had lunch with two serious delinquents who had me howling with laughter for two hours while we supped delicious nosh. Today I received a lip balm from another reprobate. This was not just any lip balm, oh no. This was Gin & Tonic lip balm! It is going into my hospital bag. I suspect I will not be allowed the real mccoy. Today I also received the most beautiful M&S flowers from the most beautiful people, one of whom I have known since he was in short trousers. How did he grow up to know about things like M&S flowers? Ah, yes, he got married. I have also received cards, letters, messages, texts, emails. The list is endless. And very much appreciated.
In other news, I am unsure whether my lack of hormones are making their absence felt. I am weepy. Having difficulty sleeping. Sometimes hot (actually I like to think I’m always hot. Hot, hot, hot! But this week I have struggled with that). And I have had a really annoying headache. It has not turned into a migraine, and for that I am grateful, but neither has it gone. I cannot say how long I have had it as I have lost all track of days. I did not have it on Monday. I have it now. It arrived sometime between the those two moments.
I scared myself silly looking up Sudden and Abrupt Cessation of HRT on t’interweb the other night. While not sleeping. Seriously, do not do it. All this stuff about the body going into permanent menopause shock. Well I’m having none of that, thank you very much. Turns out, it is entirely possible that, as well as all my symptoms being down to stress (breast cancer stressful? Who knew?!), the Captain has been doing his damnedest to kill me off with carbon monoxide poisoning! I suspect he is in league with Jeremy Hunt and is just out to save the NHS the shed load of money I am about the cost them. For the boaters among you, our stove chimney had blocked since last using it and it was only an article in Waterways World on the symptoms of carbon monoxide poisoning that finally alerted us. So now the chimney has been cleaned and the windows have been open all day and funnily enough, the headaches are clearing.
These are the last hormones I should have taken. I flushed them down the toilet on Monday evening. My cancer is hormone receptor positive (with a score of ER7/8) so I have to eschew all things hormonal from now on. I think this may turn me into a crazed beast. Ideally, when coming off HRT one gradually reduces the dose over a couple of months. But when was I ever ideal? Coming off abruptly can lead to all sorts of permanent issues apparently. Oh goody.