I think it’s fair to say that if you dream you’re having your mastectomy on Boxing Day – when the hospital 
presumably will be on a skeleton staff – it means you’re fairly anxious about the operation.
Well that was my dream last night. You really don’t need Freud to work that one out.
Well I was warned that certain chemotherapy drugs can cause your nails and nail beds to change colour, become dry and brittle, cracked, grooved and/or ridged, lifted, or sensitive.
Dry and brittle, ridged and discoloured I can cope with. I can even accept losing a couple of toenails. That’s all cosmetic, and even though it might take some time, it’ll all get better after treatment finishes. I just didn’t imagine the “sensitive” side of it would be quite so painful. Sensitive didn’t even begin to cover it.
At least now my fingernails and thumbnails (but mostly my thumbnails) are no longer so tender and sensitive to the degree that I’m unable to carry out lots of daily tasks that you usually take completely for granted. But they were for around three or four days last week. Any grasping or pressing, especially involving the thumbs, was very, very painful. Unscrew the lid off a new milk bottle? Not a chance. Pull the stalk off strawberries? No way. Open a tin of tuna? No. Do up the button on your jeans? Just. 
Press the button on the ticket machine in the supermarket car park? Doable, but only just. Turn taps on and off? Painful, but doable. Tap your PIN in at the supermarket checkout? Same. Peel an orange or a banana? You’re having a laugh. I even needed help taking my socks off a couple of times.
My thumbnails and a few other fingernails are now a bit of a mess (yes, those are my hands in the photos). On top of that, one toe nail just completely fell off the other night as I was rubbing cream into my feet. At least one other toenail looks like going the same way. Hey ho.
If you happened to bang your nails on something, the pain was excruciating – a bit like when you hit your thumb really, really hard with a hammer. 
You have no idea how many times a day your thumbnails collide with something or other. Normally you don’t even notice, but when they’re tender, even the slightest knock hurts. You lock the door when you leave the house and your thumb nail hits the door. Agony. You dry your hands on a towel and your thumbnail hits the towel rail or the wall. More agony. You run your hand down the bannister as you come down the stairs and you bang your thumb on the post at the bottom. You literally see stars. And so on, and so on, and so on. It’s just as well I was on my own in the house… no-one was there to hear the swearing. It really was that bad.
When I related a potted version of this to the oncologist at our pre-sixth chemo session review the day before yesterday, she did a series of tests to check for chemotherapy induced peripheral neuropathy, or CIPN, a known side effect of paclitaxel, the chemo drug I started two weeks ago. If I were to develop CIPN to any degree, we’d have to think about stopping the chemo as the trade-off at this stage between what the chemo’s doing to the tumour and the potential long-term damage it can cause to the nerves would no longer be in my favour.
The tests included me closing my eyes and the oncologist placing one object into one of my outstretched hands and another object into the other. I then had to make a fist with each hand and say what the objects were. For the record, they were a small coin and a paper clip. I guess if you had no feelings in your fingertips, you wouldn’t be able to work out what they were. Clever, eh? Last week, though, my problem was too much sensitivity, not a lack of it. And the problem was the nails rather than the tips of my fingers or toes. There were some signs of insensitivity in a couple of toes, but nothing too bad.
Yesterday’s chemo session – the sixth of eight- was uneventful. Let’s see what happens with the nails between now and the next session in two weeks’ time.
I’ve trimmed them down to almost nothing, which seems a shame as they haven’t actually grown in the two-and-a-half months since I started chemo. I’m still rubbing in the drops I’ve been given by the clinic and I’m considering putting on some dark nail varnish. There’s a theory that because paclitaxel is light sensitive (a thick black plastic bag is put over the infusion bag to protect the drug from the light), dark nail polish has the same effect on your nails as the black poly bags do on the infusion.
I’ll be keeping my fingers crossed there’s no repeat of last week – at least for as long as I’m able to!
Now that it’s happened a second and third time, I realise this urge to take my wig off and have a photo taken at the tops of high places is all about wanting – and perhaps needing – to record instances of being somewhere I never thought I’d be while undergoing chemo.
The first time was earlier this month at the top of a hill in Wales (The Great Sugar Loaf Uncovering). Then this past weekend it was in Paris, where we’d gone for a few days, once at the top of one of the towers of Notre Dame cathedral 
and then at the top of the Eiffel Tower.
I really thought I’d be so wiped out with the chemo that I wouldn’t be able to do much of anything at all in a physical sense. But since starting the sessions just over three months ago, I’ve managed to keep playing tennis, I’ve been out for a couple of short runs, I’ve kept cycling to some degree (if not outside then on training rollers inside), I did that hillwalk in Wales and now I’ve conquered these two Paris landmarks.
The last thing I want to do is give the impression that chemo’s been a walk in the park as it really hasn’t been (“Maureen is tolerating the chemotherapy remarkably well”… just not today). There have been some days – but thankfully not too many – when it’s taken a real effort even to move from the sofa. Also, I still have three sessions to go, although after tomorrow’s session it’ll be down to just two. But I’m hugely relieved – not to mention happy – I’ve been able to do so much. There’s an important lesson here for all us about the pointlessness of expecting the worse.
To get to the top of the Notre Dame, my husband, two boys and I climbed a total of 387 steps up a couple of very steep spiral staircases. You go up in groups of around 20 and, while I was sweating by the end of both the first and second levels, I definitely wasn’t the only one in the group who found it hard going. It was well worth it, though, for the views and the sense of achievement in equal measure. In the photo it looks like those chimeras* are about to take a bite out of my head!
Managing that inspired me to tackle the Eiffel Tower. So on Sunday night, Jamie, Finlay and I climbed the 704 steps to the 2nd stage. That was in fact easier than the near-400 steps at Notre Dame. The Eiffel Tower steps are nowhere near as steep as the steps in the cathedral tower, you’re outside so it’s cooler and there are plenty of places to stop to rest. You get the lift to the top from the 2nd stage, which is where the photo was taken. 
The blue light in the background is the laser beam from the tower. In the photo it’s the exact same colour as my jacket, but to the human eye it was white. All credit to my boys for this photo. As I prepared to “de-wig”, I asked if they were ok with me doing this. They both looked at me as if I were mad (good to see some things never change!) and one simply said “Why wouldn’t we be?”. I do wander around the house bare-headed so they are used to it.
There’s no need now for any more photos like these. I know I can do it. Also, I’m really not sure where I’d go or what I’d do next!
*Today’s architecture lesson… These are chimeras, not gargoyles. Gargoyles were built into the ends of the gutters to drain rainwater off the roof; chimeras are used as simple decorations.
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.
The results from my latest MRI scan are in and, writes the oncologist, the report “does confirm ongoing response within the breast which is good news”.
I currently have an MRI scan every month, after every two sessions of chemo, to check progress. The first scan showed the main mass had gone from 30mm to 20mm (Why my oncologist “couldn’t be happier”). This second scan shows this mass now measures 11mm. The overall affected area, which last time had gone from 100mm to 90mm, is now 87mm but is “very much less intense”. You could tell by feeling that the mass had shrunk further but it’s good to have the specific details.
The oncologist sent the results through a few days ago. I would normally show a little more enthusiasm writing about good news such as this but today I am knackered. Yesterday was our older boy’s 17th birthday and I did probably overdo it a bit.
Among other things, I made our traditional 
birthday meal of lasagna and garlic bread. I also insisted the boys take some birthday cake to their grandma, who lives in a care home a few miles away; grandma scoffed down the cake. For those of you who are freaking out at how unhealthy our birthday meals are, I should point out that we do always have a huge salad too (it’s there in the photo). I should also point out that grandma – my mother-in-law – has made it to the ripe old age of 93 without ever worrying about anything as trivial as a healthy diet!
Also, yesterday evening, I had a beer AND a glass of wine. In these abstemious times, that pretty much counts as binge drinking.
It really is a full-time job keeping track of the medicines you need to take at home, especially in the three days after chemo but also beyond.
I have even more medicines to take after this latest session than I’ve had previously. Blame the cough and the cold and the red eyes I’ve had.
So on Day 1 after chemo (we’re now on Day 3), I wake up and the first thing I do is take domperidone to guard against nausea and vomiting. This should be taken 20-30 minutes before food. So I’ve got to remember to actually have some food 20-30 minutes later. Then with or after food, I take dexamethasone, the steroid, also against nausea and vomiting. At some point, with or without food, I also need to take azithromycin, an antibiotic, to guard against chest infection.
While I’m at it, I need to get the antibiotic (chloramphenicol) drops from the fridge to prevent any bacterial eye infection from developing. 
If I ask him nicely, my husband will get them for me and will bring them upstairs with the banana that constitutes the food for the dexamethasone. I must have asked him particularly nicely this morning as he arranged everything into a nice smiley face on the pillow while I was in the loo. A bit like the chocolates they leave for you in posh hotels.
I take domperidone three times a day on Days 1, 2 & 3 or longer if needed (one tablet per dose); I take dexamethasone twice a day, also on Days 1, 2 & 3 (two tablets per dose and the second dose needs to be taken not too late in the day or I don’t get to sleep that night); azithromycin I need to take once a day for the next two weeks (one tablet per dose); and the chloramphenicol drops I’ll take four times a day for the next week.
Also on Day 1, there’s the all-important lipegfilgrastim injection that stimulates your bone marrow to boost white blood cell production*. 
That has to be kept in the fridge and taken out an hour before I inject it, and I need to inject it 24 hours after the previous day’s chemo session ended.
Even with the very helpful checklist the hospital pharmacist has prepared for you, you still have to be on the ball.
On top of all that, I use an anti-dry mouth mouthwash at least four times a day every day. And finally, there are the nail drops that are meant to stop your nails getting brittle (too late, I fear) and breaking that I’ve to massage into my finger and toe nails 2-3 times a day, every day.
I think that’s it.
By the way, I’m feeling well today. That is a very good thing as in a fit of madness we have allowed our older son, who’ll be 17 on Monday (how did that happen?), to have a party in the house tonight. I will report back in due course.
*Today’s biology lesson… Chemotherapy can make the bone marrow temporarily less efficient at producing all blood cells including neutrophils. Neutrophils are the most common type of white blood cells and they play an important role in helping the body fight off infection. If your neutrophil count falls below the normal range, as a result of chemo, for example, you have neutropenia. When you are neutropenic, you are much more likely to develop an infection and that infection can make you much more unwell than it would normally. That’s where the injection comes in, stimulating the bone marrow to boost white blood cell – and so neutrophil – production. For the numbers geeks among you, an average-size adult has a blood volume of around 4.5 – 5.5 litres and the normal range or count for neutrophils is 2.5 – 7.5 billion per litre of blood. Now how many of you knew that?
Everyone wants to know what led up to my diagnosis of breast cancer, especially the women. They usually ask one of two questions: “Did you find a lump?” or “Did they spot it on a mammogram?”. In my case, the answer to both is no. The questions, however, imply that we’re not as savvy around our breasts and breast cancer as we perhaps think we are.
With me, there was no lump. There was, rather, a hardening in an area of the right breast. Or rather, sometimes it felt hard and sometimes it didn’t. I do appreciate the literature on being “breast aware” couldn’t be clearer on that point. 
The NHS leaflet, for example, says: Any lumps, thickening or bumpy areas in one breast or armpit which seem to be different from the same part of the other breast and armpit [are] very important if new. However, it was really only when the right nipple became less prominent than usual that I realised I needed to do something about it.
I’d always prided myself on being breast aware. Indeed, I’d been proactive in arranging to have a mammogram under the NHS breast cancer screening programme after I turned 50 in 2013. Two friends had been diagnosed with breast cancer that same year so, instead of waiting to be called in for a routine mammogram, towards the end of the year I phoned and asked for an appointment. 
I had my first mammogram January 2014; it was clear. They kept me on the system and nine months later I was called up for what would have been my routine appointment. So I had another mammogram last October; that too was clear.
So what happened with that latest mammogram? Was the cancer there and they missed it? That happens more often than most of you would probably think. Or was there really nothing there at the time? I’ll find out at some point as they review as a matter of course all cases of “interval cancer”, ie cancers that are diagnosed between one scheduled mammogram and the next. Even if it’s the latter, though, it’s worth remembering that a mammogram is really just like a photo – a record of a moment in time – and that, according to a government report from 2011, only around a third of breast cancers are diagnosed through screening.
I was proactive in requesting a mammogram, but what about that thickening? How long had that been going on? I honestly don’t know but the tumour was already big (probably bigger than 5cm) and had spread to at least one axillary lymph node by the time I was diagnosed. Both those factors have huge implications in terms of treatment options and the likelihood of recurrence. In medical terms, my cancer at diagnosis was Stage IIIa. That’s still counted as early-stage and, as I’ve said in previous posts, it’s being treated with curative intent. But we’re having to use every weapon in the armoury to get rid of it and to reduce the chances of it coming back down the line: chemotherapy, mastectomy, lymph node removal, radiotherapy and long-term hormone therapy.
How much difference would it have made if I’d gone to my GP earlier? By a week or two? By a month or two? We will, of course, never know. It’s impossible to tell with any precision how long a cancer has taken to get to its current stage, although they can tell the type, ie whether it’s slow-, medium- or fast- growing. Mine, as fate would have it, is Grade 3. That’s the highest grade, and it means it’s fast-growing.
So let’s be clear. The stage of the cancer at the time of diagnosis is extremely important in terms of planning treatment and predicting outlook. The earlier it’s detected, the easier it is likely to be to treat it, the better chance of a cure, and the better the long-term prognosis.
Ladies*, I don’t know whether you’re reading this thinking “well done for going when you did” or “what an idiot not to have gone sooner”. Now ask yourself at which point you think you’d have gone to your doctor if you’d been me. Was I breast aware or not? You decide.
Breast cancer is rare in women under 50. That said, whatever age you are, you need to make sure you know what’s normal for you, that you know what changes to look for, that you look for them, and that you report any changes without delay. Early detection can be key to survival. It’s as simple as that.
*Of course breast cancer can affect men too, but those cases account for around 400, ie under 1%, of the almost 55,000 cases diagnosed in the UK every year and most men who get breast cancer are over 60.
I arrive at the centre in Wimbledon today for my 10.30am chemo appointment. I’m welcomed into the unit and see that most of the ten or so stations are already occupied. I’m shown to one of the most open and public ones in the whole unit. In responsible-citizen mode, I ask if I can sit at a more out-of-
the-way station as I have a “bit of a cough”.
This immediately sets alarm bells ringing among the medical staff; the last thing they want is someone with the lurgy in a unit full of immunocompromised cancer patients. I’m ushered into the side room. 
This, it turns out, is where I’ll be until almost eight hours later. I don’t leave for home until 4.20pm.
(I could call the side room an isolation unit to inject some ER*-type drama into things, but there really was no drama, it seemed all very tranquil and calm. For all I know, though, there could have been chaos behind the scenes with everyone cursing the oncologist for saying I should come and for giving them what turned out to be lots of extra work.)
There’s a bit of a delay but soon enough the doctor in charge (the senior medical officer) comes in. How long have you had the cold sores? Is your throat sore? When did the cough start? How long have your eyes been bloodshot? Are they sore? I explain that I am in fact on the whole better than I was on Monday when I saw the oncologist and we agreed to go ahead with the session (“Maureen is tolerating the chemotherapy remarkably well”… but not today). Only the red eyes are new.
The doctor listens to my chest with a stethoscope for any sign of infection. She’d hear a rattling noise if there were; she doesn’t. She looks at my throat; nothing terrible there. She shines a light into my eyes, sees some gunk in the left eye and says it’s conjunctivitis. She says they’ll contact the oncologist to discuss things and to suggest I should perhaps be given some antibiotics to take at home. As if I didn’t have enough drugs to take at home already (see The drugs, round 2).
We’re more than a good hour in now. So will the session go ahead as the oncologist and I want? I’m hoping it will and then I’m assuming it will as they go ahead and settle me in on the bed and set me up for chemo while the oncologist is consulted. I think at this stage I’m given the pre-meds. They repeat the blood tests that were done on Monday to see whether the levels are still healthy enough for chemo. The bloods are sent off and the tests run immediately.
Four separate swabs are taken of my mouth and nose – two of each – to see whether any infection that may be there is viral or bacterial. It’ll take a couple of days to get those results. I think blood is taken for yet more tests but, frankly, by now I’m losing track.
The blood results come back. They’re good and we’re on. It’s nearly 1pm.
Paclitaxel, the chemo agent, is given via a drip over three hours, and that finishes just before 4pm. After the chemo, more blood is taken so they can check my “inflammatory markers”. After a couple of other small procedures, it’s 4.20pm and I get to leave, with a warning to call immediately if I get a fever or start to feel worse.
I also pick up various take-home meds from the fridge, including Lonquex, the drug that promotes the production of white blood cells that I’m to inject myself with late tomorrow afternoon.
In addition to Lonquex and the anti-sickness tablets (one of which is a steroid) I’m due to take already, the oncologist has prescribed one lot of antibiotics (tablets) to prevent chest infection, another lot (drops) for my eyes, and a steroid (another) to take if an old gastrointestinal condition that’s showing signs of flaring up again actually does so. I’ll soon need one of those little pill boxes that are marked with days of the week.
That was a long day. However, I read The Sunday Times Culture section back-to-back (a rare treat). I did also doze for an hour-and-a-half or so. And the staff are all lovely. I did cough a lot; they were right to isolate me. I wouldn’t have wanted to be anywhere near me. So to the friend whose offer of chemo company I rejected, sorry again, but it really was the right choice!
I’d been warned that the anti-histamine I’d been given pre-chemo might make me drowsy and that I might need driving home but in the end I was fine.
So here I am back home and about to go to bed, tired but relieved that session five went ahead as planned and that there are now only three sessions to go. 19 August, the day of the first session, seems such a long time ago.
*Yes, ER really is the last TV hospital drama that I’ve watched. It started in 1994 and it was the drama that launched George Clooney. I think it’s fair to say I’ve had a crush on him ever since.
Below is a list of the drugs I’ll be taking under the second part of my chemotherapy regime, which begins later today with round 1 and, assuming all goes well, ends on 25 November with round 4.
Yes, there’s a lot there, but I’m just a little concerned that there are just two anti-sickness drugs to take after these next four rounds as opposed to the three that there were with the four rounds that have just ended. The wonderful Emend/aprepitant is missing from the list. I’ve been told it’s not needed because paclitaxel, the chemo drug I’m starting on now, is less likely to induce nausea and vomiting than doxorubicin and cyclophosphamide, the two chemo drugs I was having before. I guess you’ve got to trust the professionals. They got it right last time. Fingers crossed.
|
Drug |
What is this for? |
Manufacturer |
Comments |
|
Palonosetron (Aloxi®) |
Anti-sickness |
Chugai Pharma |
Pre-medication |
|
Dexamethasone |
Anti-sickness/prevent hypersensitivity reaction |
Hospira UK Ltd |
Pre-medication and post chemotherapy |
|
Chlorphenamine |
Anti-histamine to ameliorate hypersensitivity reaction |
Archimedes Pharma UK |
Pre-medication |
|
Ranitidine |
Histamine receptor 2 antagonist, pre-medication |
GSK |
Pre-medication |
|
Sodium Chloride 0.9% |
To keep IV line patent |
Baxter UK Ltd |
Line Flush |
|
PACLITAXEL |
Chemotherapy |
Hospira |
|
|
Domperidone |
Anti-sickness |
Generic brand |
Post Chemotherapy |
|
Laxido® |
For constipation |
Galen Ltd |
For gentle relief of constipation if needed |
|
Biotene® |
For oral hygiene |
GSK |
Non-alcohol based mouthwash |
|
Onicolife® nail drops |
To strengthen nail cuticles |
MosaicLife |
|
|
Lipegfilgrastim (Lonquex®) |
To boost white blood cell count |
Teva Pharma |
Long acting Granulocyte-Colony stimulating factor (G-CSF) |
I’m sitting at home feeling sorry for myself, nursing a cough that has kept me – and my other half* – awake for the best part of the past three nights. I also have a cold, a sore throat, and the remnants of a couple of cold sores and some unbelievably painful mouth and tongue ulcers.
I’m consoling myself by drinking Lemsip a friend dropped off earlier (along with some flowers – Thanks!) and by reading the oncologist’s report to the surgeon following my mid-September appointment with her in which she writes that “Maureen is tolerating the chemotherapy remarkably well… and is feeling very optimistic and positive”. On balance that’s true, it just doesn’t apply today.
I had another appointment with the oncologist yesterday. Showing distinct sadistic tendencies, she determined – or rather, in the spirit of the collaborative doctor-patient relationship that we’re espousing, we agreed – that, despite my various ailments, I should still go ahead with tomorrow’s chemo session, the first of four with Taxol/paclitaxel.
Here’s a full list of the side effects I’ve experienced at some point or other during the four cycles of doxorubicin and cyclophosphamide I’ve had over the past two months.
That really is quite unpleasant but it does give you an excuse to have ice lollies in October.In one or more of the four cycles, I also had a sore throat for a few days, one or two days of my eyes being dry and sore, and the odd headache.
All in all, I’d say I got off lightly. If you’re reading through all of that thinking that doesn’t sound light to me, believe me, it is.
I’m anticipating a long day at the clinic tomorrow. Paclitaxel is given over three hours and, with the various the pre-meds and procedures, I’m estimating I’ll be there for best part of five hours. I hope to doze through a lot of it and catch up on some of the sleep I’ve been missing as a result of this cough.
The oncologist has warned me that with paclitaxel there could be further hair loss. So I could still lose my eyebrows and eyelashes. Let’s hope not.
And just to end, I think I may be developing conjunctivitis.
It really is just one indignity after another.
*I did warn my husband that if anyone was moving into the spare room, it was him. If he chooses not to go and then can’t get to sleep for my coughing, whose fault is that?!
iamtheoneineight 