So I have had some pretty shitty news. As you know, a few weeks ago I went into hospital for a preventative oophorectomy, to remove my ovaries and fallopian tubes in order to prevent me from getting ovarian cancer to which I am genetically pre-disposed. After removing them, they sent them off to the lab, and unfortunately ovarian cancer had already started to grow. So now I'm facing another few months of treatment to tackle this second cancer diagnosis, just as I was starting to feel strong again after beating breast cancer.
It will all start on Tuesday (yes, they're moving fast!) with some more surgery. This time it's a significantly more major procedure. They will open me up properly from navel to chest and remove a whole bunch of my insides: my uterus, cervix, all my lymph nodes and my omentum, which is part of the peritoneum, which is the layer of tissue which keeps all my organs in place (hopefully they won't move around too much after it's gone!). Also, while the surgeon is in there, he'll take a look around, and if he sees anything dodgy he'll take that too. The operation will take about 5 and a half hours, then I'll be in the HDU (High Dependency Unit) for a couple of days, and then on the ward for about a week before they'll let me go home. They'll send everything they remove to the lab again, and then we will know 100% what we're dealing with.
And then three weeks later I will have to start chemotherapy again. This time 6 rounds of chemo, every 3 weeks as before, which should take me up to September sometime. The drugs for ovarian cancer are different from the ones I had for breast cancer. I will be having carboplatin and paclitaxel. So the side effects may be slightly different, but the basics are the same (fatigue, hair loss, damage to nails and skin, compromised immune system etc).
Needless to say, I'm gutted, and Tanai and I have been quite upset these last few days. It just seems so frustrating that when I'm finally feeling strong and we are starting once more to talk about the future and get excited about things, that I get kicked down once again by cancer. But, in my usual approach to these things, I am determined to fight it and do my best to get through it once again. I'm seeing it as a bump in the road rather than a complete disaster. Plus, I'm going into it with my eyes open this time, having been through treatment once before. This will have its differences, but I know I can get through it. And I will actually use my learnings from last time to tackle it slightly differently this time.
I will try to exercise much more through chemo, if I can handle it with the fatigue. Last time I had chemo I put on 10 kilos (a stone and a half) and it's taken me a year and a half to almost get rid of it all! Now that I'm in medically-induced menopause and on Tamoxifen, combined with my residual cancer-related fatigue, it's much harder to lose weight, so I'm going to try to avoid putting too much on during treatment. I will do little lunchtime walks to Primrose Hill and gentle exercises at home, once I'm healed from surgery. I will also ensure I eat a healthy, nutrient-rich diet. I do this anyway, but I will be conscious of it much more, and won't be as indulgent as I was last time during chemo. Also my hair has just started to get to a length where it's feeling like a hair style again! So I'm going to attempt to keep my hair. I will only wash it once a week and tie it up with headbands, and hope that it only thins, rather than comes out completely. This may be a pipe dream but I shall try! At least I have kept all my headscarves from last time if it does end up coming out.
The good news is that a CT scan I had on Tuesday shows that it's unlikely to have spread. I have a high grade cancer, which means it's fast growing and aggressive (as was my breast cancer) but it feels as though I've caught it early and I have every chance of beating it. I will have to postpone my preventative mastectomy, and hopefully that won't cause me similar problems, but I'm still planning on having that done as soon as possible.
As with last time, my employer is being very supportive and, once I'm recovered from surgery, I'm planning to work throughout treatment. However, I'm due to run out of paid sick leave soon, so one of my biggest worries about all of this is about finances. So I've decided to put myself out for small freelance jobs -- proofreading, copywriting, baking, strategic planning -- basically anything I can put my mind to in my spare time. Hopefully I can ensure we can make ends meet.
The other change this time is that I will be more willing to ask for help. Tanai and I shouldered the majority of the burden ourselves last time, and we are both still exhausted from that. Tanai especially as I couldn't do as much. So this time we will be putting the word out and asking for help. I'll put a post up in a couple of weeks with more specific requests for support and for paid work for me, but in the meantime any offers of healthy home-cooked food are very welcome. I have not had time to fill my freezer with batch-cooked meals and I want to eat as healthily as possible. Tanai is a great cook and I know he can cook for us both, but it's a nice way to ease the burden and help us out financially at the same time.
Anyway, that's enough info for now. First things first: I need to get through Tuesday's surgery and recover from that. Then once I'm home I'll do a bit more logistical planning and will post again with more info.
It sucks, but I'm feeling hopeful and as strong as I can be in the circumstances. And so very glad that I pushed and pushed to have the BRCA test after my oncologist said 'no' three times, and then once I had a positive result, to immediately get the ball rolling to have my ovaries removed. I have given myself the best possible fighting chance. Now our NHS have to do the rest.
Showing posts with label beginnings. Show all posts
Showing posts with label beginnings. Show all posts
Saturday, 30 March 2019
Tuesday, 14 March 2017
Vacuums
Today I was back at St Bart's for some new biopsies, as my tests thus far have proved inconclusive (see previous post). My radiologist today was Dr D___, the first male doctor to treat me and definitely the most formal. So far, every single NHS employee who has met me has looked me in the eye and said 'Hello, my name is...' and used their first name. (Which, as an aside, has an incredible effect on me. I feel like a real person and not just someone on a conveyor belt. It creates a connection, however fleeting, and does wonders for your wellbeing.) This chap said 'Hello, my name is Dr D___', surname, not first name, so I knew there was no messing with him. Business rules apply.
I still had my usual cheery disposition though. For some reason, I have no idea why this happens, I put on this kind of goofy cheery persona when I'm seeing medical professionals. I almost apologise for being ill and taking up their time, and laugh at how silly this all is. I marvel at the science behind all of their medicine, asking loads of questions and being inquisitive about the details, while looking away during any procedure. Perhaps this is my nervous way of coping with it, but I'm sure it comes across as a little strange.
Today's biopsies were different from the previous ones, as these were 'vacuum biopsies'. They used a bigger needle than last time (we're talking industrial size, the length of your forearm and thicker than a fork prong) that was hooked up to a computer, which vacuumed out slices of tissue (ew, gross). I had the usual series of local anaesthetic beforehand so it was pain-free but the noises were weird. No clicking this time though. Afterwards the doctor put 2 little titanium clips inside my boob to mark where they'd taken the biopsies, just in case they need to go back in, or operate. Bionic woman!
No results today, so I'm back at home and catching up on some work.
Here's a photo of a knackered looking me on the sofa with a bag of frozen peas pressed against my boob. Classy.
Today as we left the hospital Tanai declared that he's decided my pirate name is 'Black Boob Carmel', in honour of my incredibly bruised boob. He has a fantastic ability to make me laugh, even when things are shit. When I asked him what I should call this blog he thought about it for quite some time and then replied, in all sincerity: 'The Inevitability of Biology'. He's such a dork, but I love him, and I feel strong through this with him by my side.
Cx
Cx
Friday, 10 March 2017
Delays
Today was supposed to be results day, but it didn't quite work out that way. Tanai and I arrived at St Bart's promptly for my 9am appointment with my surgeon, Miss L___, but it didn't go to plan. She didn't yet have the report from Wednesday's MRI scan and apparently some of the biopsy results were inconclusive, so it's going to take a little while longer to know what is going on. She is fairly certain that the large lump is a cancer, but the results from the small lump are inconclusive, so I have to have another biopsy on Monday 20 March. This one will be a different kind (a vacuum one, hmmmm), and then I get my results on 31 March. THREE MORE WEEKS OF WAITING! Argh!
But apparently the results from the cells taken from my lymph node in my armpit were clear, which indicates that it's unlikely that the cancer has spread too far, which bodes well. I'm trying not to get too optimistic, but I'm certainly feeling more positive today. She is going to book me in for a provisional surgery date in April so at least I have a vague timeframe now.
On the way out of the hospital after a frustrating morning, we popped into the hospital museum. Yes, due to its fascinating history, St Bart's has a little museum, filled with medieval medical instruments and incredible facts. For example, I had no idea that, upon returning from Afghanistan, a Dr Watson met a certain Sherlock Holmes in a lab at St Bartholomew's:
I wasn't as impressed by the amputation instruments from the 1500s, they looked pretty gruesome. On the way out of the hospital, we also realised that William Wallace, who fought for Scotland's independence in the 1200s, was hanged, drawn and quartered on a site very close to here:
Such a fascinating, history-filled area. Plenty to distract myself with while I play the waiting game for another three weeks.
But apparently the results from the cells taken from my lymph node in my armpit were clear, which indicates that it's unlikely that the cancer has spread too far, which bodes well. I'm trying not to get too optimistic, but I'm certainly feeling more positive today. She is going to book me in for a provisional surgery date in April so at least I have a vague timeframe now.
On the way out of the hospital after a frustrating morning, we popped into the hospital museum. Yes, due to its fascinating history, St Bart's has a little museum, filled with medieval medical instruments and incredible facts. For example, I had no idea that, upon returning from Afghanistan, a Dr Watson met a certain Sherlock Holmes in a lab at St Bartholomew's:
Or that in the 1700s, the hospital had its own brewhouse, and patients drank beer as part of their diet (which was considerably better for them than the water of the time). Here is a malt shovel from the hospital's brewhouse:
There are also two magnificent Hogarth paintings on the stairs, one of the Good Samaritan and one of Christ healing the sick:
I wasn't as impressed by the amputation instruments from the 1500s, they looked pretty gruesome. On the way out of the hospital, we also realised that William Wallace, who fought for Scotland's independence in the 1200s, was hanged, drawn and quartered on a site very close to here:
Such a fascinating, history-filled area. Plenty to distract myself with while I play the waiting game for another three weeks.
Tuesday, 7 March 2017
In limbo
I don't think any days in my life have ever felt as though they are passing as s.l.o.w.l.y. as the last few days... Today is Tuesday and I still have 3 more days until I go back to St Bart's for my test results. I've been keeping myself busy at work and at home, and the wounds from the biopsies are slowly starting to heal. I've been cancelling most of my social arrangements and just keeping things low-key. Tanai and I have been coming home, cooking yummy, healthy dinners and having a quiet few days. We didn't even leave the flat once on Sunday! Lazy. But it feels good, I am looking after myself, trying to prepare myself for what's coming, and taking some time to talk things over with Tanai.
Although I've decided not to tell people until I have my proper diagnosis, I have reached out to a couple of friends who I know have experienced similar things. One friend's mum has just been diagnosed with cancer for the third time, and she was really supportive and made me feel less shit about burdening my friends with my news. Another friend had a tumour herself, and she told me she threw a 'reasons to be cheerful' party before her surgery (an idea which I'm sure I will steal!). And another friend in Australia whose mum had breast cancer and kicked its arse, has recommended me a book about the choices you have to make, and being informed when you make those choices. I'm about a quarter of the way through that book, and it's definitely helping me feel more informed. Tanai has been doing some research too, and I'm hoping he will ask most of the questions on Friday. He is a scientist after all, and approaches these things in a different way to me! Between us we have our bases covered.
Things we have been talking about this week:
Q) How do I feel about having one or both breasts removed?
A) To be honest I am okay with that. I would rather be alive with no boobs than the alternative! And actually, although I have great boobs (they're really great, F cup, inorite!) they don't define me, and I certainly wouldn't feel any less of a woman without one or both of them. I had to read some of Audre Lorde's cancer journals for my masters studies recently, and she is pretty dismissive of boob reconstruction and the prosthetic industry. I would probably put something in my bra just to avoid being too lopsided (mainly to prevent others from feeling awkward!) but I'm not interested in having a fake boob, or preserving nipples or anything. Tanai agrees, luckily. Of course he likes my boobs, but he likes me even more.
Q) What about losing my hair?
A) Again, I'd just roll with whatever came. I have great hair, too, really thick and lush, but if I lost it, so what. I'd just get my friends to come over and teach me how to wear fabulous head scarves, or get some cute wigs. I've rocked short hair before, I can do it again.
We've also talked a lot about how to tell people. Tanai told his parents, which was tough. They both live in Colombia and don't speak English, so it's kind of hard for me to speak with them about this. But they are giving us both all their good thoughts and healing vibes. The thing I'm most worried about when I tell people is that they will start to treat me differently, or pity me. Urgh. I wonder how I can tell people while also guiding them to feel as strong and positive as I am trying to be. To still treat me like they normally do, and to not be afraid of saying anything that makes me upset (indeed, to not be afraid of me getting upset!). I think this is something I need to work on over the next few days.
After my biopsy I had dressings on my right breast which I was not allowed to get wet for a few days. I had to kneel on the bathroom floor while Tanai washed my hair over the bath. And I've been getting him to photograph my boobs each day as the bruise spreads, so that I have a document of everything. The bruising is pretty spectacular, all the colours of the rainbow! He is being incredibly supportive. Our relationship is relatively young, by most people's standards (we only met just over a year ago, and got married after 4 months, eloping to Vegas! Ha ha) but we are so close and I think this experience will probably bring us closer. We are having to have quite confronting conversations, and we have cried more in this last week than during the entire rest of our relationship, but we are being very open and honest with each other, gentle with each other, and hopefully this experience won't be too much of a strain on our relationship. It's not what we were expecting! Hell, we have 3 holidays booked this year that we may not be able to go on, but we'll just deal with it, and postpone some of our dreams.
I also told our head of HR at work, as I have to come up with a plan about how I am going to tell my team. She is amazing in general anyway, but in this instance was so helpful, supportive and wise. I didn't know but she has had personal experience with this, so not only is she supporting me in a professional way, but giving me very practical, specific advice too. I feel so grateful that I have so many wise, supportive people around me, and I know that once I spread my news wider, a strong support network will form around me to help me with this.
One of the other knock-on effects is that I'm being a little more conscious of my impact on others. I would say I'm quite a direct, sometimes brusque, person, and I don't suffer fools gladly. But over the last few days I have been more thoughtful of the time I give to others. The words of praise, encouragement. I feel as though I'm shedding some self-consciousness about being honest, and understanding with more acute awareness the emotional impact my actions have on others. It's a subtle change, because I think I kind of do this anyway, but it's an interesting discovery to note.
Okay, back to the waiting game...
Although I've decided not to tell people until I have my proper diagnosis, I have reached out to a couple of friends who I know have experienced similar things. One friend's mum has just been diagnosed with cancer for the third time, and she was really supportive and made me feel less shit about burdening my friends with my news. Another friend had a tumour herself, and she told me she threw a 'reasons to be cheerful' party before her surgery (an idea which I'm sure I will steal!). And another friend in Australia whose mum had breast cancer and kicked its arse, has recommended me a book about the choices you have to make, and being informed when you make those choices. I'm about a quarter of the way through that book, and it's definitely helping me feel more informed. Tanai has been doing some research too, and I'm hoping he will ask most of the questions on Friday. He is a scientist after all, and approaches these things in a different way to me! Between us we have our bases covered.
Things we have been talking about this week:
Q) How do I feel about having one or both breasts removed?
A) To be honest I am okay with that. I would rather be alive with no boobs than the alternative! And actually, although I have great boobs (they're really great, F cup, inorite!) they don't define me, and I certainly wouldn't feel any less of a woman without one or both of them. I had to read some of Audre Lorde's cancer journals for my masters studies recently, and she is pretty dismissive of boob reconstruction and the prosthetic industry. I would probably put something in my bra just to avoid being too lopsided (mainly to prevent others from feeling awkward!) but I'm not interested in having a fake boob, or preserving nipples or anything. Tanai agrees, luckily. Of course he likes my boobs, but he likes me even more.
Q) What about losing my hair?
A) Again, I'd just roll with whatever came. I have great hair, too, really thick and lush, but if I lost it, so what. I'd just get my friends to come over and teach me how to wear fabulous head scarves, or get some cute wigs. I've rocked short hair before, I can do it again.
We've also talked a lot about how to tell people. Tanai told his parents, which was tough. They both live in Colombia and don't speak English, so it's kind of hard for me to speak with them about this. But they are giving us both all their good thoughts and healing vibes. The thing I'm most worried about when I tell people is that they will start to treat me differently, or pity me. Urgh. I wonder how I can tell people while also guiding them to feel as strong and positive as I am trying to be. To still treat me like they normally do, and to not be afraid of saying anything that makes me upset (indeed, to not be afraid of me getting upset!). I think this is something I need to work on over the next few days.
After my biopsy I had dressings on my right breast which I was not allowed to get wet for a few days. I had to kneel on the bathroom floor while Tanai washed my hair over the bath. And I've been getting him to photograph my boobs each day as the bruise spreads, so that I have a document of everything. The bruising is pretty spectacular, all the colours of the rainbow! He is being incredibly supportive. Our relationship is relatively young, by most people's standards (we only met just over a year ago, and got married after 4 months, eloping to Vegas! Ha ha) but we are so close and I think this experience will probably bring us closer. We are having to have quite confronting conversations, and we have cried more in this last week than during the entire rest of our relationship, but we are being very open and honest with each other, gentle with each other, and hopefully this experience won't be too much of a strain on our relationship. It's not what we were expecting! Hell, we have 3 holidays booked this year that we may not be able to go on, but we'll just deal with it, and postpone some of our dreams.
I also told our head of HR at work, as I have to come up with a plan about how I am going to tell my team. She is amazing in general anyway, but in this instance was so helpful, supportive and wise. I didn't know but she has had personal experience with this, so not only is she supporting me in a professional way, but giving me very practical, specific advice too. I feel so grateful that I have so many wise, supportive people around me, and I know that once I spread my news wider, a strong support network will form around me to help me with this.
One of the other knock-on effects is that I'm being a little more conscious of my impact on others. I would say I'm quite a direct, sometimes brusque, person, and I don't suffer fools gladly. But over the last few days I have been more thoughtful of the time I give to others. The words of praise, encouragement. I feel as though I'm shedding some self-consciousness about being honest, and understanding with more acute awareness the emotional impact my actions have on others. It's a subtle change, because I think I kind of do this anyway, but it's an interesting discovery to note.
Okay, back to the waiting game...
Wednesday, 1 March 2017
I'm sorry, what?
So it all started in a fairly nonchalant way, as so many of life's most momentous events do. I had travelled to Colombia with my relatively new husband, Tanai, to meet his family for the first time, to roll out my terrible Spanish, celebrate Christmas there and to see the town where he was born. We were laying on a bed in his aunt's house in Monteria, Tanai's hometown, mid-December 2016, relaxing under the ceiling fan in the 35-degree heat, trying to move as little as possible so as to preserve energy (I'm not very good in hot climates!). Suddenly I felt a lump in my right breast that I'd not felt before, and it felt a little ominous.
"Tanai, check this out, do you think it's a lump? Should we get it looked at?" I asked.
We decided to get it checked out as soon as we were back home in the UK. Occasionally during the rest of our holiday my hand wandered to my boob, checking to see if the lump was still there, and it was, persistently.
We arrived back in London in early January but had to suddenly move house. What with essay deadlines for uni (I'm doing a Masters at the moment), finding somewhere new to live, actually moving house and registering with a new GP in our area, I didn't actually get the lump checked out by my GP until Friday 10 February 2017. Still, pretty swift moving, I reckon.
My GP decided to refer me to the hospital for more tests, "just to be on the safe side", which was why I found myself in the Breast Clinic at St Bartholomew's Hospital, near Spitalfields Market, this Monday, 27 February.
Let's take a moment to rewind about 8 years, when I was living in Australia, and I found a lump in my left breast. I visited a rather swanky clinic in Sydney and paid a few hundred dollars for a very painful biopsy, only to be told it was just a cyst, and I was fine. I naively imagined that this new lump would result in pretty much the same outcome, and when Tanai asked if I wanted him to come with me, I didn't think it was necessary. He insisted, and, in retrospect, how grateful I am that he was with me.
St Bartholomew's (affectionately known as St Bart's) is the oldest hospital in Britain still providing medical care, and was founded in 1123. Its funding was removed at the dissolution of the monasteries but King Henry VIII refounded it in 1546, and it was known as 'The House of the Poore in West Smithfield in the Suburbs of the City of London'. The Breast Clinic is in the West Wing, built in 1752 and situated through a rather grand old courtyard, but inside it's all modern, clean and efficient, with some lovely artwork in the waiting rooms. The place was packed with women of all ages, here for various tests, and we were warned it would take a while.
First up for me was the ultrasound. I was surprised as I'd been told in the leaflet I got in the mail that I would have to have a mammogram first but apparently they are not routine if you are under 40, so they started with the ultrasound. This is where they put some squidgy gel onto your boob and then use a hand-held scanning probe to scan your breast. You can immediately see the inside of your boob on the screen in front of you in black and white, which is pretty cool. My radiologist's name was Dr S___*, and she was really lovely. We casually chatted about art and culture while she scanned my boob, including her recent trip to Melbourne where she saw the Hockney exhibition at the NGV (with which so many of my Facebook friends back in Australia had recently flooded my feed!). She had also taken her family to see a recent show at the place where I work, called The Mad Hatter's Tea Party, a hip hop musical based on Alice in Wonderland, and they'd loved it. She was so lovely I almost forgot why I was there. She then said that they would like me to have a mammogram after all, so I was to pop back into the waiting room and someone would get me for that.
Mammograms are not much fun, if any of you have had one. They basically get a big machine and squish your boob between two plastic sheets so that they can take a 'flat' X-Ray of it. You have 4 X-Rays in total, two of each boob, at different angles. It's pretty uncomfortable, and you have to stay really still, but it doesn't last very long.
Then back to the waiting room for more waiting. Luckily, Tanai had brought his book and I had brought 2 essays with me that I had to read for uni, so the time passed. Then back to Dr S___'s room where she was going to take a biopsy.
Here's the bit where you look away if you don't like needles! There are several different types of biopsy, and I had 'stereotactic core biopsies'. A biopsy is where they take a large needle to take some samples of the lump inside your boob that is causing concern. These samples are then sent to a lab for testing. With a 'stereotactic' biopsy they use the ultrasound scanner on your boob at the same time, so that they can guide the needle into the right place. It helps them get the exact position so that you don't have to get the procedure repeated again (and believe me, you don't want it repeating!). First, they put two small needles of local anaesthetic in to numb the area, so that the biopsy needles don't hurt. Once it was numb, I didn't feel a thing. They make a loud 'click' noise when they're taking the samples, and Dr S___ and her assistant, F___, made sure they warned me each time I was going to hear a click.
They did 9 biopsies in total, which was a lot more than I was expecting, (5 from the big lump I had felt in Colombia and 4 from another little one which Dr S___ had spotted on the screen), and they then put a fine needle into my armpit to get some cells from a lymph node. That one hurt a lot, as there was no anaesthetic, but by then I was feeling very brave and just closed my eyes and breathed.
Then it was back down to the waiting room to wait for a consultant to give me the results. By this stage I was getting kind of suspicious. Everyone was being so incredibly nice to me, and kept asking if I wanted any water or a cup of tea. I mean, everyone knows the NHS is amazing, but really, this felt a little excessive. When the nurse (F___) came to get me, she suggested that Tanai come too. Then I was introduced to my surgeon, Miss L___, who checked my breasts and asked me some further questions about my health, before saying that she'd like me to come back on Friday 10 March to get the results of the biopsies, but that the lump was indeed very suspicious looking from what they could see on the ultrasound and mammograms, and that it's very likely that I have breast cancer.
Gosh, that's the first time I've written it out. In black and white. I have breast cancer. It's pretty shocking, I wasn't expecting to hear these words, or indeed to get such a diagnosis straight away, so it didn't immediately sink in.
Tanai asked some questions, and the staff were very lovely, but there's a limit to what they can tell us until we have the biopsy results next week. Now we just have to wait (what feels like forever!) to know the details, such as what stage it's at, and what my treatment plan is.
We walked home a little in shock, and got on with making lunch. I didn't go back into work as planned as I was feeling very sore from the biopsies (my boob is black and blue, I felt like I'd been beaten up!) and exhausted from the emotional rollercoaster. We simply held each other, talked a bit about it, cried a little, and tried to give each other as much support as possible. I had a movie to watch for one of my uni modules so we started watching that. And then we watched some videos on the Breast Cancer Care website about 'How to Tell Family and Friends about your Diagnosis' and I called my mum and my dad. Those calls were a bit strange as I didn't really have any facts to tell them, so I kept it brief and said I'd call them again when I got my results. And now I don't feel like telling anyone else. The only other person who knows is my manager at work, who has been incredibly supportive, and I've decided I don't want to tell anyone until I know what I'm actually telling them. It feels so speculative at the moment and I don't want people to worry if they don't have to. I know I will need to be strong for the people around me so I need to wait until I have a bit more information in order to do that.
F___ called back the same afternoon and said they've booked me in for an MRI scan on Wednesday 8 March. Because I'm relatively young (in comparison to most women who are diagnosed with breast cancer), my breast tissue is very dense, so the imaging on MRI scans is much clearer than on a mammogram or an ultrasound. So I guess this is for them to be very certain about it. I also had to pop back that afternoon for blood tests. All of the needles!
It's very strange, I've never imagined this would happen to me. And I've just reached a stage of my life where I'm so incredibly happy. In my work, my relationship, my home life, my studying, my friendships -- what a terrible blow. At my lowest moments I am heartbroken -- how can this happen to me? It's not fair! I'm so young! And then I know I can't think like that and I have to just be strong, and get through this. Cancer is a total lottery, I got (un)lucky. I took the tube to work the next day and was sitting on the train, looking around at the faces of Londoners heading to work, thinking 'I have a sad sad secret. What secrets do you have?'.
I was actually really thankful to be able to go into work. It's giving me something to concentrate on, to distract myself from negative thoughts, and believe me, I am concentrating hard. Occasionally a stupid thought will come into my head, like 'I need to write down all my passwords so that Tanai can log into things if he has to' and then I just feel silly, and dismiss the thought. We need to stay positive. We need to keep finding things to smile about, and laugh at. We need to still feel happiness in our day and not let this get us down. When I was crying over the Breast Cancer Care videos the other day, the stormy skies outside the flat cast a beautiful glowing light through the blind, and the daffodils on the windowsill made a lovely silhouette against the blind. I paused the video to point out the lovely image. I can't let this stop me finding the beauty in the everyday.
It's now Wednesday, two days after my diagnosis. I've been very busy at work. This morning I had to do a large presentation to 85 students from King's College, studying for their MA in Cultural Management. And then I had class myself at LSE this afternoon. Now I'm home and I've just put dinner in the oven. I have decided to start this blog as a record of my journey through whatever happens in the coming days, weeks and months. I don't really care if no-one reads it, but I think it will help me process what I'm going through, record my thoughts and feelings, and provide me with a bit of an outlet. And who knows, one day it may help someone else going through the same thing. So here it is, a blog I never thought I'd write: Carmel's Cancer Journey.
Cx
* Everyone in the NHS has been lovely, and most of them introduce themselves by name when you first meet them, and wear name badges. However, due to patient-doctor confidentiality, I'm not going to write any of their names in full on this blog.
"Tanai, check this out, do you think it's a lump? Should we get it looked at?" I asked.
We decided to get it checked out as soon as we were back home in the UK. Occasionally during the rest of our holiday my hand wandered to my boob, checking to see if the lump was still there, and it was, persistently.
We arrived back in London in early January but had to suddenly move house. What with essay deadlines for uni (I'm doing a Masters at the moment), finding somewhere new to live, actually moving house and registering with a new GP in our area, I didn't actually get the lump checked out by my GP until Friday 10 February 2017. Still, pretty swift moving, I reckon.
My GP decided to refer me to the hospital for more tests, "just to be on the safe side", which was why I found myself in the Breast Clinic at St Bartholomew's Hospital, near Spitalfields Market, this Monday, 27 February.
Let's take a moment to rewind about 8 years, when I was living in Australia, and I found a lump in my left breast. I visited a rather swanky clinic in Sydney and paid a few hundred dollars for a very painful biopsy, only to be told it was just a cyst, and I was fine. I naively imagined that this new lump would result in pretty much the same outcome, and when Tanai asked if I wanted him to come with me, I didn't think it was necessary. He insisted, and, in retrospect, how grateful I am that he was with me.
St Bartholomew's (affectionately known as St Bart's) is the oldest hospital in Britain still providing medical care, and was founded in 1123. Its funding was removed at the dissolution of the monasteries but King Henry VIII refounded it in 1546, and it was known as 'The House of the Poore in West Smithfield in the Suburbs of the City of London'. The Breast Clinic is in the West Wing, built in 1752 and situated through a rather grand old courtyard, but inside it's all modern, clean and efficient, with some lovely artwork in the waiting rooms. The place was packed with women of all ages, here for various tests, and we were warned it would take a while.
First up for me was the ultrasound. I was surprised as I'd been told in the leaflet I got in the mail that I would have to have a mammogram first but apparently they are not routine if you are under 40, so they started with the ultrasound. This is where they put some squidgy gel onto your boob and then use a hand-held scanning probe to scan your breast. You can immediately see the inside of your boob on the screen in front of you in black and white, which is pretty cool. My radiologist's name was Dr S___*, and she was really lovely. We casually chatted about art and culture while she scanned my boob, including her recent trip to Melbourne where she saw the Hockney exhibition at the NGV (with which so many of my Facebook friends back in Australia had recently flooded my feed!). She had also taken her family to see a recent show at the place where I work, called The Mad Hatter's Tea Party, a hip hop musical based on Alice in Wonderland, and they'd loved it. She was so lovely I almost forgot why I was there. She then said that they would like me to have a mammogram after all, so I was to pop back into the waiting room and someone would get me for that.
Mammograms are not much fun, if any of you have had one. They basically get a big machine and squish your boob between two plastic sheets so that they can take a 'flat' X-Ray of it. You have 4 X-Rays in total, two of each boob, at different angles. It's pretty uncomfortable, and you have to stay really still, but it doesn't last very long.
Then back to the waiting room for more waiting. Luckily, Tanai had brought his book and I had brought 2 essays with me that I had to read for uni, so the time passed. Then back to Dr S___'s room where she was going to take a biopsy.
Here's the bit where you look away if you don't like needles! There are several different types of biopsy, and I had 'stereotactic core biopsies'. A biopsy is where they take a large needle to take some samples of the lump inside your boob that is causing concern. These samples are then sent to a lab for testing. With a 'stereotactic' biopsy they use the ultrasound scanner on your boob at the same time, so that they can guide the needle into the right place. It helps them get the exact position so that you don't have to get the procedure repeated again (and believe me, you don't want it repeating!). First, they put two small needles of local anaesthetic in to numb the area, so that the biopsy needles don't hurt. Once it was numb, I didn't feel a thing. They make a loud 'click' noise when they're taking the samples, and Dr S___ and her assistant, F___, made sure they warned me each time I was going to hear a click.
They did 9 biopsies in total, which was a lot more than I was expecting, (5 from the big lump I had felt in Colombia and 4 from another little one which Dr S___ had spotted on the screen), and they then put a fine needle into my armpit to get some cells from a lymph node. That one hurt a lot, as there was no anaesthetic, but by then I was feeling very brave and just closed my eyes and breathed.
Then it was back down to the waiting room to wait for a consultant to give me the results. By this stage I was getting kind of suspicious. Everyone was being so incredibly nice to me, and kept asking if I wanted any water or a cup of tea. I mean, everyone knows the NHS is amazing, but really, this felt a little excessive. When the nurse (F___) came to get me, she suggested that Tanai come too. Then I was introduced to my surgeon, Miss L___, who checked my breasts and asked me some further questions about my health, before saying that she'd like me to come back on Friday 10 March to get the results of the biopsies, but that the lump was indeed very suspicious looking from what they could see on the ultrasound and mammograms, and that it's very likely that I have breast cancer.
Gosh, that's the first time I've written it out. In black and white. I have breast cancer. It's pretty shocking, I wasn't expecting to hear these words, or indeed to get such a diagnosis straight away, so it didn't immediately sink in.
Tanai asked some questions, and the staff were very lovely, but there's a limit to what they can tell us until we have the biopsy results next week. Now we just have to wait (what feels like forever!) to know the details, such as what stage it's at, and what my treatment plan is.
We walked home a little in shock, and got on with making lunch. I didn't go back into work as planned as I was feeling very sore from the biopsies (my boob is black and blue, I felt like I'd been beaten up!) and exhausted from the emotional rollercoaster. We simply held each other, talked a bit about it, cried a little, and tried to give each other as much support as possible. I had a movie to watch for one of my uni modules so we started watching that. And then we watched some videos on the Breast Cancer Care website about 'How to Tell Family and Friends about your Diagnosis' and I called my mum and my dad. Those calls were a bit strange as I didn't really have any facts to tell them, so I kept it brief and said I'd call them again when I got my results. And now I don't feel like telling anyone else. The only other person who knows is my manager at work, who has been incredibly supportive, and I've decided I don't want to tell anyone until I know what I'm actually telling them. It feels so speculative at the moment and I don't want people to worry if they don't have to. I know I will need to be strong for the people around me so I need to wait until I have a bit more information in order to do that.
F___ called back the same afternoon and said they've booked me in for an MRI scan on Wednesday 8 March. Because I'm relatively young (in comparison to most women who are diagnosed with breast cancer), my breast tissue is very dense, so the imaging on MRI scans is much clearer than on a mammogram or an ultrasound. So I guess this is for them to be very certain about it. I also had to pop back that afternoon for blood tests. All of the needles!
It's very strange, I've never imagined this would happen to me. And I've just reached a stage of my life where I'm so incredibly happy. In my work, my relationship, my home life, my studying, my friendships -- what a terrible blow. At my lowest moments I am heartbroken -- how can this happen to me? It's not fair! I'm so young! And then I know I can't think like that and I have to just be strong, and get through this. Cancer is a total lottery, I got (un)lucky. I took the tube to work the next day and was sitting on the train, looking around at the faces of Londoners heading to work, thinking 'I have a sad sad secret. What secrets do you have?'.
I was actually really thankful to be able to go into work. It's giving me something to concentrate on, to distract myself from negative thoughts, and believe me, I am concentrating hard. Occasionally a stupid thought will come into my head, like 'I need to write down all my passwords so that Tanai can log into things if he has to' and then I just feel silly, and dismiss the thought. We need to stay positive. We need to keep finding things to smile about, and laugh at. We need to still feel happiness in our day and not let this get us down. When I was crying over the Breast Cancer Care videos the other day, the stormy skies outside the flat cast a beautiful glowing light through the blind, and the daffodils on the windowsill made a lovely silhouette against the blind. I paused the video to point out the lovely image. I can't let this stop me finding the beauty in the everyday.
It's now Wednesday, two days after my diagnosis. I've been very busy at work. This morning I had to do a large presentation to 85 students from King's College, studying for their MA in Cultural Management. And then I had class myself at LSE this afternoon. Now I'm home and I've just put dinner in the oven. I have decided to start this blog as a record of my journey through whatever happens in the coming days, weeks and months. I don't really care if no-one reads it, but I think it will help me process what I'm going through, record my thoughts and feelings, and provide me with a bit of an outlet. And who knows, one day it may help someone else going through the same thing. So here it is, a blog I never thought I'd write: Carmel's Cancer Journey.
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* Everyone in the NHS has been lovely, and most of them introduce themselves by name when you first meet them, and wear name badges. However, due to patient-doctor confidentiality, I'm not going to write any of their names in full on this blog.
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