This week I had my fourth round of chemo, which means I'm officially half way through! Cue: celebratory bells, klaxons and all you can think of. It's kind of hard for me to get too excited as it's not over yet, and it's still an uphill battle, but it is definitely a good milestone.
At the half way mark they give you a scan to see how well the chemo is working, so today I popped back to St Bart's for another ultrasound. Although I'm not supposed to get the results immediately (they go to my oncologist, who discusses them at the weekly Multi-Disciplinary Meeting before my appointment with her) I cheekily asked the sonographer if she could let me have a peek at the screen, and if she was allowed to share the measurements with me. Luckily she obliged (I threw in the 'I'm going through so much crap with this chemo business, it would be good to know it's actually working' line) and it was good news. The tumour has shrunk by 60%, meaning it's less than half the size it originally was back in February. It's still there, but the chemo is definitely doing its job.
The news has given me a little resolve. Although chemo is really tough, it's working, and is nuking the cancer, so I need to persevere. I'm also moving onto a different drug regimen. My four rounds of AC are over with (bye bye to the 'red devil' Doxyrubicin) and my next four rounds are 'TPH', or Docetaxol, Herceptin and Pertuzumab. I've been researching these as they have different side effects, and Tanai and I will be purchasing some supplies to get me through these new drugs. For my next chemo session, I have to be in hospital for the full day, from 10am, as they need to keep me under observation for 6 hours following the administration of Herceptin, to check that I don't have an allergic reaction. The Docetaxol (or 'the tax') is the one I've heard lots about. It's the one that can make your fingernails fall off, and it makes your bones ache. I'm not looking forward to that one, but with today's news I will hopefully find some inner strength to keep going for the next four rounds.
My friend Dominic accompanied me to chemo this time, and I got a window seat in the ward, on what ended up being the hottest June day since 1976. We spent a lovely 5 hours putting the world to rights, and I am writing another blog post about some of the interesting things we discussed, around resilience and self-compassion. Dom works for a prostate cancer charity so really I was doing him a favour, allowing him to join me on a chemo ward for 'research' purposes. But joking aside, once again I count myself incredibly privileged to have the kinds of amazing friends who would do something such as accompany me to chemo. Again and again I am blown away by your generosity and compassion, and I know that's what continues to sustain me as this journey gets tougher and tougher.
Monday, 26 June 2017
Sunday, 18 June 2017
Younger Women Together
This Friday and Saturday I went on a two-day retreat run by Breast Cancer Care called 'Younger Women Together', an annual event they run for women under the age of 45 with a breast cancer diagnosis. They run these events in 5 different parts of the country so of course I signed up for the 'London' edition, only to discover that it was held only 20 minutes' walk from our flat. It felt a bit silly staying in a hotel so close to where we live but I really wanted to take this time out to meet other young women going through the same thing, and to get the most out of the event.
The schedule was packed, with guest speakers including a brilliant medical oncologist who gave us a whistle-stop tour of cancer, prognoses and treatments, as well as new studies and the future of cancer treatment; a presentation by a nutritionist about diet, nutrition and cancer; and a fab session on exercise and its importance in fighting cancer and preventing it from returning, as well as keeping my energy levels up while going through treatment and fatigue. There were also smaller break-out sessions on menopause symptoms (yes, I will have the joys of hot flushes etc so needed some tips and tricks); intimacy and sexuality (that discussion definitely stays within those four walls); and a 'laughter yoga' session (quite bizarre but strangely energising). Did you know that laughter is proven to release hormones in the body which actually help to boost your immune system and fight depression? I think I'll be booking more tickets to comedy events in the future. The chap leading the session also talked about how life isn't black and white, in that tears don't always = sadness and laughter doesn't always = happiness. There is awkward laughter, you can laugh with relief, confusion, or with empathy. And there are tears of joy, you can be moved to tears by something beautiful, you can cry with empathy and relief, and sometimes tears are a release. It sounds obvious, but it was good to be reminded of this simple fact.
Without doubt, the best thing about the event was meeting 39 other phenomenal women, from all different walks of life across the South of England, at various stages of their treatment, and feeling like I could speak freely about what I'm going through and take strength and advice from their experiences. There was plenty of over-sharing, a fat dollop of black humour, tears, hugs and a lot of laughter. There were bald women, women with one boob, flat-chested women, women with fluffy post-chemo hair growth, other women in headscarves, women a couple of years post-treatment who had run marathons and swum Lake Windermere to raise money for cancer charities. Every single one of these women is phenomenal, strong, a warrior woman. I took something from every encounter, I was inspired by their stories, I got plenty of tips for dealing with what the future holds, and I made new friends. I'm relatively early on my cancer journey, and there's a long way to go, but I feel less scared and alone knowing these women are by my side.
My favourite talk of the event was the closing one, by an amazing woman called Kelly who was diagnosed with breast cancer in 2006, just as she'd quit her job and was about to embark on a round-the-world trip with her fiance. She took us through her journey with all its good times and dark days, which included a mastectomy, chemo, appearing with Gok Wan on 'How to Look Good Naked', her wedding, cancer recurrence four years later, more chemo, a new calling as an underwear model and training department store ladies how to help post-surgery women find lingerie, etc. She found new reserves of inner strength, and confronted her biggest fears. I found myself crying throughout her talk, but not simple tears of sadness. I felt recognition, I saw into my future a little, I was inspired by her attitude, by her honesty, by her fragility and her strength all at once. I really hope that when I am no longer receiving treatment and with luck when I am well, that I will be able to help and inspire other women earlier than I on their journeys.
So now I'm back home, and I have a few days off as the wonderful Rosser family are visiting from Australia so I'm enjoying spending a few days with them. It's so lovely having my Australian family finally meet Tanai! And then I head off for my fourth chemo on Wednesday, after which I will finally be half way through chemo. I met a woman at the BCC event who had a similar diagnosis to me, except that her tumour was twice the size. She had what's called a 'complete pathalogical response', which means that by the end of her chemo, when they carried out scans and biopsies before her surgery, they could no longer find any cancer in her breast. They still did some small surgery, to excise the margins around where her tumour was, but it prevented her from needing a mastectomy. Fingers crossed the same thing happens for me!
Here are some recent headscarf photos for those of you not on instagram. I've had some wonderful gifts of fabric and scarves, and I'm really enjoying trying even more new styles. Although in this recent heat, I may have to rock the bald look!
Top left: a gorgeous scarf from my Auntie Siobhan who bought it while on holiday in Morocco. Top right: two scarves tied with a 'double halo' style as demonstrated by Yassmin Abdel-Magied. Bottom left: some gorgeous Marimekko fabric from the Rossers which I finally got hemmed. Bottom right: my scarf from Knots UK, tied in a unicorn style.
The schedule was packed, with guest speakers including a brilliant medical oncologist who gave us a whistle-stop tour of cancer, prognoses and treatments, as well as new studies and the future of cancer treatment; a presentation by a nutritionist about diet, nutrition and cancer; and a fab session on exercise and its importance in fighting cancer and preventing it from returning, as well as keeping my energy levels up while going through treatment and fatigue. There were also smaller break-out sessions on menopause symptoms (yes, I will have the joys of hot flushes etc so needed some tips and tricks); intimacy and sexuality (that discussion definitely stays within those four walls); and a 'laughter yoga' session (quite bizarre but strangely energising). Did you know that laughter is proven to release hormones in the body which actually help to boost your immune system and fight depression? I think I'll be booking more tickets to comedy events in the future. The chap leading the session also talked about how life isn't black and white, in that tears don't always = sadness and laughter doesn't always = happiness. There is awkward laughter, you can laugh with relief, confusion, or with empathy. And there are tears of joy, you can be moved to tears by something beautiful, you can cry with empathy and relief, and sometimes tears are a release. It sounds obvious, but it was good to be reminded of this simple fact.
Without doubt, the best thing about the event was meeting 39 other phenomenal women, from all different walks of life across the South of England, at various stages of their treatment, and feeling like I could speak freely about what I'm going through and take strength and advice from their experiences. There was plenty of over-sharing, a fat dollop of black humour, tears, hugs and a lot of laughter. There were bald women, women with one boob, flat-chested women, women with fluffy post-chemo hair growth, other women in headscarves, women a couple of years post-treatment who had run marathons and swum Lake Windermere to raise money for cancer charities. Every single one of these women is phenomenal, strong, a warrior woman. I took something from every encounter, I was inspired by their stories, I got plenty of tips for dealing with what the future holds, and I made new friends. I'm relatively early on my cancer journey, and there's a long way to go, but I feel less scared and alone knowing these women are by my side.
My favourite talk of the event was the closing one, by an amazing woman called Kelly who was diagnosed with breast cancer in 2006, just as she'd quit her job and was about to embark on a round-the-world trip with her fiance. She took us through her journey with all its good times and dark days, which included a mastectomy, chemo, appearing with Gok Wan on 'How to Look Good Naked', her wedding, cancer recurrence four years later, more chemo, a new calling as an underwear model and training department store ladies how to help post-surgery women find lingerie, etc. She found new reserves of inner strength, and confronted her biggest fears. I found myself crying throughout her talk, but not simple tears of sadness. I felt recognition, I saw into my future a little, I was inspired by her attitude, by her honesty, by her fragility and her strength all at once. I really hope that when I am no longer receiving treatment and with luck when I am well, that I will be able to help and inspire other women earlier than I on their journeys.
So now I'm back home, and I have a few days off as the wonderful Rosser family are visiting from Australia so I'm enjoying spending a few days with them. It's so lovely having my Australian family finally meet Tanai! And then I head off for my fourth chemo on Wednesday, after which I will finally be half way through chemo. I met a woman at the BCC event who had a similar diagnosis to me, except that her tumour was twice the size. She had what's called a 'complete pathalogical response', which means that by the end of her chemo, when they carried out scans and biopsies before her surgery, they could no longer find any cancer in her breast. They still did some small surgery, to excise the margins around where her tumour was, but it prevented her from needing a mastectomy. Fingers crossed the same thing happens for me!
Here are some recent headscarf photos for those of you not on instagram. I've had some wonderful gifts of fabric and scarves, and I'm really enjoying trying even more new styles. Although in this recent heat, I may have to rock the bald look!
Top left: a gorgeous scarf from my Auntie Siobhan who bought it while on holiday in Morocco. Top right: two scarves tied with a 'double halo' style as demonstrated by Yassmin Abdel-Magied. Bottom left: some gorgeous Marimekko fabric from the Rossers which I finally got hemmed. Bottom right: my scarf from Knots UK, tied in a unicorn style.
Saturday, 10 June 2017
Neutropenia and immunocompromise
The few friends and colleagues I've explained this to have suggested I spread the news more widely, so here's a little post about one of the biggest risks I face over the coming months while I'm going through chemotherapy. As I mentioned in my last post, the chemo drugs attack rapidly dividing cells (such as cancer cells) and while the cancer cells can't repair themselves very well, the healthy cells in your body (which also take a battering from the chemo) use the three weeks between treatments to rebuild themselves and recover as much as possible. As well as the hair follicles, the cells in my bone marrow and blood are also being attacked. As the chemotherapy medicines damage the bone marrow, the marrow is less able to produce red blood cells, white blood cells and platelets. The most significant impact is on my white blood cells, or neutrophils, which are your body's first line of defence against germs, viruses and infections. Because the chemo is attacking my body's own defence system, I am what is known as 'immunocompromised' during treatment, which means I have a suppressed immune system.
But this doesn't just mean I may have the inconvenience of catching a cold or cough. This is actually a potentially life-threatening situation. If my neutrophil count goes below a certain critical level, I have what is called neutropenia, or neutropenic sepsis; I will not be able to fight off a virus or infection, and will require urgent treatment should I be unlucky enough to catch something. I have been told that if this happens, I need to immediately go to A&E and will be put on intravenous antibiotics, and probably also have a blood transfusion. Not only that, but I have a special card that I have to carry around at all times, kind of like an A&E Platinum card, which enables me to bypass the queue for treatment should I be unlucky enough to end up in the emergency room.
Many of the women I have chatted to in my various support groups have ended up with neutropenic sepsis at least once during chemo, some being hospitalised for a few days. So I've been bracing myself for it to happen at some stage during treatment. As treatment progresses, it becomes more likely, because the chemo is cumulative, so my neutrophil count is getting lower and lower as I go along.
Each chemo cycle I have my blood tested a couple of days before I go in for treatment, and they will only proceed if my counts are good enough. If they are too low, I will either get a lower dose of chemo drugs, or they will delay. My first bloods (back in mid-April) were:
Neutrophils: 4.4
White Blood Cells: 7.1
My second lot in early June were:
Neutrophils: 3.7
White Blood Cells: 6.1
And my third tests just before the last chemo were:
Neutrophils: 2.6
White Blood Cells: 4.5
As you can see, the neutrophils and white blood cell counts are slowly getting lower and lower each time. Immediately after chemo they are very low: in the 5-8 days following chemo I am at much greater risk of neutropenic sepsis, and then as I eat well, sleep well, look after myself and my body heals itself, the counts start to climb again and stabilise as much as possible before I have my next treatment. If my neutrophils go below 1 it means I am at a critical level, and if they are lower than 0.5 I basically need to have a stay in A&E.
Now I've always had a great immune system, I rarely get ill and I am quite cavalier in my approach to infection. I mean, I'm clean and hygienic, but I'm not obsessed or anything. Until now. Things are now very different. I am being very careful about what I touch and keeping everything very sanitary. As soon as I get in to work or home I wash my hands, and I'm carrying hand sanitiser everywhere. I am avoiding eating out, and if I do, I'm eating very 'safe' things (things cooked very thoroughly on a high heat, avoiding prepared salads etc). I'm making my own lunch for work every day, using my own crockery and cutlery, using my own water bottle all day, and avoiding food prepared by others. My colleagues are being amazing, they have had a 'spring clean' of their desks, they are all making sure the windows are open to let in air circulation and if any of them feel at all unwell they are staying at home, to avoid me catching anything. I've changed my contact lenses to dailies so that I don't have to put the same lenses back in my eyes each day, thus reducing the risk of infection. I never eat in public or put my hands or fingers in my eyes or mouth (it's amazing how much I used to do that!) and I never touch anything on the tube. I'm so much more conscious of small things now, such as other people on the tube coughing or sneezing, the wonders of a dishwasher for making sure things are really clean, the cleanliness of chopping boards and the joys of contactless payment for reducing my need to handle germy cash.
I'm also avoiding small children (aka germ factories) as they are some of the biggest risks as I go through treatment. When Tanai had a cold last week he was quarantined on the couch and I wouldn't let him prepare any food (and no kisses for a week, torture!). Basically, I'm being very conscious of all the things I can do to reduce risk, and hoping that those around me are doing the same on my behalf. So thank you for avoiding me if you have a cold, and thanks for being understanding by keeping your kids away until I am no longer immunocompromised. Auntie Carmel will be back in service in a few months.
In other news, I'm on the mend after Chemo #3, and have been back at work for a couple of days this week. It was a tough round, this round, I had severe nausea and fatigue, yet couldn't sleep at all for about 4 nights, which made it very difficult. I was listless and had a fog behind my eyes for days, and the cognitive impairment lasted almost a week, until I felt I had a clear head again. Still, I'm over a third of the way there, and after my next chemo I get to have another ultrasound to see how much the lump has shrunk.
Back at the beginning of treatment I found out that a friend of a friend had named her lump 'Donald' and Tanai jokingly suggested I should name mine 'Theresa'. At the time, I was convinced she'd win this week's election by a landslide and therefore jinx my ability to get rid of my lump, so I declined. How wrong I was! Theresa was perhaps a more apt name for my lump than I had anticipated. Her strength is certain vastly reduced, how delightful.
But this doesn't just mean I may have the inconvenience of catching a cold or cough. This is actually a potentially life-threatening situation. If my neutrophil count goes below a certain critical level, I have what is called neutropenia, or neutropenic sepsis; I will not be able to fight off a virus or infection, and will require urgent treatment should I be unlucky enough to catch something. I have been told that if this happens, I need to immediately go to A&E and will be put on intravenous antibiotics, and probably also have a blood transfusion. Not only that, but I have a special card that I have to carry around at all times, kind of like an A&E Platinum card, which enables me to bypass the queue for treatment should I be unlucky enough to end up in the emergency room.
Many of the women I have chatted to in my various support groups have ended up with neutropenic sepsis at least once during chemo, some being hospitalised for a few days. So I've been bracing myself for it to happen at some stage during treatment. As treatment progresses, it becomes more likely, because the chemo is cumulative, so my neutrophil count is getting lower and lower as I go along.
Each chemo cycle I have my blood tested a couple of days before I go in for treatment, and they will only proceed if my counts are good enough. If they are too low, I will either get a lower dose of chemo drugs, or they will delay. My first bloods (back in mid-April) were:
Neutrophils: 4.4
White Blood Cells: 7.1
My second lot in early June were:
Neutrophils: 3.7
White Blood Cells: 6.1
And my third tests just before the last chemo were:
Neutrophils: 2.6
White Blood Cells: 4.5
As you can see, the neutrophils and white blood cell counts are slowly getting lower and lower each time. Immediately after chemo they are very low: in the 5-8 days following chemo I am at much greater risk of neutropenic sepsis, and then as I eat well, sleep well, look after myself and my body heals itself, the counts start to climb again and stabilise as much as possible before I have my next treatment. If my neutrophils go below 1 it means I am at a critical level, and if they are lower than 0.5 I basically need to have a stay in A&E.
Now I've always had a great immune system, I rarely get ill and I am quite cavalier in my approach to infection. I mean, I'm clean and hygienic, but I'm not obsessed or anything. Until now. Things are now very different. I am being very careful about what I touch and keeping everything very sanitary. As soon as I get in to work or home I wash my hands, and I'm carrying hand sanitiser everywhere. I am avoiding eating out, and if I do, I'm eating very 'safe' things (things cooked very thoroughly on a high heat, avoiding prepared salads etc). I'm making my own lunch for work every day, using my own crockery and cutlery, using my own water bottle all day, and avoiding food prepared by others. My colleagues are being amazing, they have had a 'spring clean' of their desks, they are all making sure the windows are open to let in air circulation and if any of them feel at all unwell they are staying at home, to avoid me catching anything. I've changed my contact lenses to dailies so that I don't have to put the same lenses back in my eyes each day, thus reducing the risk of infection. I never eat in public or put my hands or fingers in my eyes or mouth (it's amazing how much I used to do that!) and I never touch anything on the tube. I'm so much more conscious of small things now, such as other people on the tube coughing or sneezing, the wonders of a dishwasher for making sure things are really clean, the cleanliness of chopping boards and the joys of contactless payment for reducing my need to handle germy cash.
I'm also avoiding small children (aka germ factories) as they are some of the biggest risks as I go through treatment. When Tanai had a cold last week he was quarantined on the couch and I wouldn't let him prepare any food (and no kisses for a week, torture!). Basically, I'm being very conscious of all the things I can do to reduce risk, and hoping that those around me are doing the same on my behalf. So thank you for avoiding me if you have a cold, and thanks for being understanding by keeping your kids away until I am no longer immunocompromised. Auntie Carmel will be back in service in a few months.
In other news, I'm on the mend after Chemo #3, and have been back at work for a couple of days this week. It was a tough round, this round, I had severe nausea and fatigue, yet couldn't sleep at all for about 4 nights, which made it very difficult. I was listless and had a fog behind my eyes for days, and the cognitive impairment lasted almost a week, until I felt I had a clear head again. Still, I'm over a third of the way there, and after my next chemo I get to have another ultrasound to see how much the lump has shrunk.
Back at the beginning of treatment I found out that a friend of a friend had named her lump 'Donald' and Tanai jokingly suggested I should name mine 'Theresa'. At the time, I was convinced she'd win this week's election by a landslide and therefore jinx my ability to get rid of my lump, so I declined. How wrong I was! Theresa was perhaps a more apt name for my lump than I had anticipated. Her strength is certain vastly reduced, how delightful.
Monday, 29 May 2017
Headscarf wrapping workshop
One of the most well-known side-effects of chemotherapy is the loss of hair. This happens because the chemo drugs attack rapidly-dividing cells in the body (fast-growing cells). Their primary target is the fast-growing cancer cells, but the 'collateral damage' effect means that other, healthy fast-growing cells also get attacked. Hair follicles are some of the fastest-growing cells in the body, so these are often some of the first to go. This is also the reason why my nails are getting brittle and weak. I prepared for hairloss early on, shopping for fabric on Berwick street with friends, and as soon as my hair showed signs of falling out, I took over, shaving my hair off completely rather than waiting for it to fall out gradually.
Since then I've been experimenting with different headscarves, watching various youtube videos and trying out different styles. I've had some wonderful friends send me vintage scarves, lend me their own collection, and my talented friend Bree even sent me one of her own handpainted scarves, with a beautiful floral design. Many of the videos are by Muslim or Jewish women, who are exploring creative ways of covering their hair for religious or cultural reasons, and some of my favourites are by African beauty bloggers, as I love the way they incorporate volume on the top of their heads, making the final effect quite large and impressive. I feel as though this makes me look less as though I am 'ill' and more like I'm making a fashion statement. Now I know that no-one can ever accuse me of being fashionable in any way, but I may as well try to at least be a little stylish while I'm spending the next few months as a baldy, rather than looking like the washerwoman of yore.
Some of my previous attempts
More experimenting
Keen to expand my headscarf-tying repertoire, on Saturday I went along to a headscarf workshop at Hello Love in Bloomsbury. Hello Love is a delightful new shop on Southampton Row, which only opened seven weeks ago, and is run by the Hello Beautiful Foundation, set up by a woman who had breast cancer, with the aim of providing women with complementary therapies and nutrition information to help them while going through treatment. I've been following them on instagram after a friend sent me their link, but this was my first trip to their dojo, and I immediately loved the space and the fabulous things they have for sale. They had invited Sandra from Knots UK to run the scarf workshop, and she greeted me with a big smile when I arrived, complimenting me on the scarf I was already wearing. My friend Taey came along too as she wanted to know how to tie scarves herself, and we tried a few different styles.
This is the 'before' photo!
I love this front twist style
New ways of tying my square scarves
Not sure about this one, it's a bit 'minnie mouse' on me
Stacking some serious height
Taey and I with our fabulous teacher
Taey looking beautiful
Mastering a simple but lovely wrap style
Mid-instruction
Strutting our scarves on the streets
Sandra is from Miami, Florida, with a Nigerian heritage, and much of the fabric she sells is from Africa, with fabulous bright prints. It's a great size for doing a whole range of styles. I got some Marimekko fabric sent over from Australia recently and I think I will hem it to exactly this size as it's perfect.
I still like some of the youtube videos I've found, but I definitely got some new styles out of the day, and Taey got plenty of inspiration too! And I came away with a fabulous new red scarf, which is just my colour.
The afternoon was a lot of fun, and I passed another milestone too, it was the first time I'd been out in public completely bald. Although I wore my pink scarf to the workshop, I had to take it off (of course) in order to try out new styles with different scarves. At first I was a little nervous as I've never been bald in public before, but no-one batted an eyelid, even though the shop is in the middle of busy Holborn with floor-to-ceiling glass at the front. It emboldened me and I also went bald the next day when I cycled to the Tate to see the David Hockney exhibition. I popped into the bathrooms where there was a busy queue, whipped off my helmet and cloth cap liner in front of everyone and nonchalantly wrapped on my scarf.
Who cares? So I'm bald, so what? But this is actually quite strange for so many people. I've met women who have honestly and genuinely stated that losing their hair was more traumatic for them than losing their breast, or getting their diagnosis in the first place. This absolutely astounds me, and I think it all stems from the pressure society places on women to look 'beautiful' and the attachment people place on their hair as part of their image and identities. I mean, I get that it can be upsetting to some people to suddenly lose all their hair, and being bald isn't necessarily the best look in the world, but it's just bloody hair, it will grow back! And it's saving me so much time in the mornings when I shower and get ready. And you know what, I like my face, and being bald isn't making my face any less awesome, in fact, it's obscuring it less than my hair did, and making me appreciate and love it more.
I did get a wig, as they are provided to you by the NHS if you want them. But as soon as I put it on, I knew it was not for me. I just feel so incredibly self-conscious, and aware that I'm wearing fake hair. And everyone else will know. And as one of my friends said, it ages me by about 20 years!
Be-wigged
It's likely I will be bald until early 2018, so I may as well rock the headscarf look. And I can have such fun with so many different fabrics and styles. I think I will even continue to wear scarves occasionally once my hair grows back, especially when it's sunny and I want to protect my scalp, or on days when I can't be bothered washing my hair.
Cheers to that!
Thursday, 25 May 2017
Health update
Today I had my regular visit to the oncologist before next Wednesday's chemo, which is round #3. This is primarily to check in about how it all went last time and make sure I'm okay to keep going. My oncologist, Dr S___, was not there today so I saw someone else from her team, Dr H___, a male oncologist. He was very friendly and helpful. First of all I had to describe how things went last time and how I was feeling. I explained that I'm doing really well, very few major side effects, and I've got good energy levels at the moment and have been cycling into work this week. I did mention that I'd found it quite hard in the week following treatment but I'm feeling more prepared for the next round.
He then gave me a physical examination to see how the lump in my breast was faring. After the first chemo I noticed that it had become particularly hard and was very prominent, but after the second one it had softened again. Over the last few days I mentioned to Tanai that I was having problems locating it, and that I suspected it had been getting smaller. However, I hadn't wanted to get too excited about it. Well Dr H___ agreed with me, it was definitely smaller. His professional estimation is that it has shrunk to half the size, and is now only 1.5cm! This is great news. Of course we won't know for sure until the scan after 2 more rounds of chemo, but this has definitely made me feel better about going in for round #3 next week. I feel as though I'm not on a treadmill, but I'm actually making some progress, and that even though the chemo makes me feel absolutely shit, at least I can see now that it's actually working.
Also, he had my CT scan results. I had the scan almost a month ago, but because of the recent virus infecting the NHS' computers, they could not access the results before today. Happily, the scans are all clear, so the cancer has not spread to my lungs, ovaries or other organs. This is definitely reason to celebrate.
Yesterday my friend Jana drove us both to IKEA to pick up some things for our homes. She needed some new shelves and I wanted to buy loads of plants and plantpots, and create a lovely indoor garden in our flat. We are still living in a relatively bare apartment as my furniture is on its way from Australia on a ship, but I wanted to have some greenery around me as I'm spending so much more time at home than I usually do, and I thought it would make me feel healthier and happier. I have missed being out in the countryside (I usually do a lot of weekend hiking but my energy levels are not allowing that at the moment), so I thought I'd bring some greenery inside. I'm very pleased with my first steps at building an indoor garden, and I'm inviting people to bring us clippings of their own plants to add to it! It all started with some lovely plants from Caroline, Elizabeth and Kim, and now I'm expanding my collection. Let's hope I have at least some of my grandma's green fingers.
Once again, while the NHS is taking very good care of my physical health, I'm having to look after my mental health myself. I truly believe that this is such an important part of my treatment and recovery, and both the physical and the psychological go hand in hand. I have been trying to do a small amount of yoga practice each day (when I have enough energy) and 20 minutes of mindfulness meditation. This is so important in helping me to focus, to sleep, and to ensure I retain some clarity with all these new thoughts running through my head. Last weekend I read a book called 'Post-Traumatic Growth', which is about ensuring that trauma brings about positivity in one's life. It examined the key elements of post-traumatic stress and then outlined some frameworks and mechanisms for dealing with going through a traumatic time, and remaining resilient and strong, and coming out of it with more wisdom, grace and learnings, and ultimately with positivity rather than PTSD. I have also been ensuring that I go for long walks when I have the energy (long walks are so good for my mental health!) and practicing gratitude: really considering the good things in my life and the things for which I'm grateful.
Tanai and I laugh a lot, there is so much to find funny in this world, and last weekend we had a long chat about the holidays we'd like to have after my treatment is finished, and our dreams for the future. It really feels good to have some things to look forward to and focus on during treatment. It reminds me of one of my favourite Walt Whitman poems:
No turning back! O youth, a weary road
Spreads out before you! Hidden grief lurks there,
And burning fires of vice lie smouldering there,
And disappointment's clutching fangs wait there;
But far ahead, up in the height of heaven,
Glitters a star. O, let thy constant gaze
Be fixed upon that star; step not away,
But gazing on the brightness of the guide,
Press forward to the end and falter not!
Cx
He then gave me a physical examination to see how the lump in my breast was faring. After the first chemo I noticed that it had become particularly hard and was very prominent, but after the second one it had softened again. Over the last few days I mentioned to Tanai that I was having problems locating it, and that I suspected it had been getting smaller. However, I hadn't wanted to get too excited about it. Well Dr H___ agreed with me, it was definitely smaller. His professional estimation is that it has shrunk to half the size, and is now only 1.5cm! This is great news. Of course we won't know for sure until the scan after 2 more rounds of chemo, but this has definitely made me feel better about going in for round #3 next week. I feel as though I'm not on a treadmill, but I'm actually making some progress, and that even though the chemo makes me feel absolutely shit, at least I can see now that it's actually working.
Also, he had my CT scan results. I had the scan almost a month ago, but because of the recent virus infecting the NHS' computers, they could not access the results before today. Happily, the scans are all clear, so the cancer has not spread to my lungs, ovaries or other organs. This is definitely reason to celebrate.
Yesterday my friend Jana drove us both to IKEA to pick up some things for our homes. She needed some new shelves and I wanted to buy loads of plants and plantpots, and create a lovely indoor garden in our flat. We are still living in a relatively bare apartment as my furniture is on its way from Australia on a ship, but I wanted to have some greenery around me as I'm spending so much more time at home than I usually do, and I thought it would make me feel healthier and happier. I have missed being out in the countryside (I usually do a lot of weekend hiking but my energy levels are not allowing that at the moment), so I thought I'd bring some greenery inside. I'm very pleased with my first steps at building an indoor garden, and I'm inviting people to bring us clippings of their own plants to add to it! It all started with some lovely plants from Caroline, Elizabeth and Kim, and now I'm expanding my collection. Let's hope I have at least some of my grandma's green fingers.
My plant haul
Celebrating today's results with some champers!
Once again, while the NHS is taking very good care of my physical health, I'm having to look after my mental health myself. I truly believe that this is such an important part of my treatment and recovery, and both the physical and the psychological go hand in hand. I have been trying to do a small amount of yoga practice each day (when I have enough energy) and 20 minutes of mindfulness meditation. This is so important in helping me to focus, to sleep, and to ensure I retain some clarity with all these new thoughts running through my head. Last weekend I read a book called 'Post-Traumatic Growth', which is about ensuring that trauma brings about positivity in one's life. It examined the key elements of post-traumatic stress and then outlined some frameworks and mechanisms for dealing with going through a traumatic time, and remaining resilient and strong, and coming out of it with more wisdom, grace and learnings, and ultimately with positivity rather than PTSD. I have also been ensuring that I go for long walks when I have the energy (long walks are so good for my mental health!) and practicing gratitude: really considering the good things in my life and the things for which I'm grateful.
Tanai and I laugh a lot, there is so much to find funny in this world, and last weekend we had a long chat about the holidays we'd like to have after my treatment is finished, and our dreams for the future. It really feels good to have some things to look forward to and focus on during treatment. It reminds me of one of my favourite Walt Whitman poems:
No turning back! O youth, a weary road
Spreads out before you! Hidden grief lurks there,
And burning fires of vice lie smouldering there,
And disappointment's clutching fangs wait there;
But far ahead, up in the height of heaven,
Glitters a star. O, let thy constant gaze
Be fixed upon that star; step not away,
But gazing on the brightness of the guide,
Press forward to the end and falter not!
Cx
Tuesday, 16 May 2017
Anniversary
Last Sunday, 14 May, was a year since Tanai and I snuck off to the Wee Kirk o' the Heather in Las Vegas and tied the knot. We had a whirlwind romance, and that was such a wonderful, giddy, boundlessly happy time, it's hard to think it was only a year ago. Of course I didn't expect to spend our one year anniversary with such a huge chemo hangover, but that's how it panned out.
Getting ready for the wedding, larking in our hotel room
Just married! Having a burger and beer after getting hitched
I really wanted to treat Tanai for our anniversary, as we've been dealt such a crap hand of late, and he's been such a legend looking after me and being supportive and loving through these difficult times. I had anticipated feeling well-ish by Sunday, with it being 7 days after my chemo, so I booked for us to have a lovely afternoon tea in the Barbican Conservatory, a wonderful green-filled space only a short walk from our house. Tanai is a photosynthesist and so of course loves plants, in particular flowers, so I knew he'd love the setting. And it felt like something that would be do-able even if I felt tired.
Despite starting out well this cycle, by Thursday I felt like I'd been hit by a truck. I was completely shattered and feeling very unwell. It's perhaps a little TMI but one of the side effects of the anti-nausea meds is constipation, which I had with a vengeance by Thursday. So of course I panicked and took 6 different types of laxatives, which meant I had diarrhoea by Friday. Ah chemo, the gift that keeps on giving! Consequently, although I was hugely fatigued, I couldn't sleep properly at all, waking every 1-2 hours, preventing me from getting any real deep sleep. By Sunday I was completely exhausted and only made it out of bed with enough time to get ready and head out for the lunch. Simply stringing a sentence together uses up all of my energy on days like that!
The conservatory was delightful, sun-filled and an absolute hit with Tanai, especially some of the fabulous flowers in the cactus house. We sat down for our little sandwiches and cakes, all of which contained ingredients grown in the conservatory. A myriad of charming, intricate flavours accompanied by a glass of champagne; it was a lovely afternoon tea. With my new found taste-buds I would have preferred more savoury to sweet, but my usual self would not have had that quibble. Tanai then surprised me with a Barbican membership as my anniversary present! So I will no doubt enjoy plenty of cultural experiences here over the coming year, just a short walk from our flat. Can't wait.
My handsome hubby
Some loon with an incredible afternoon tea!
Cactus flowers
We then headed home and within 5 minutes I was back in bed for a nap. What a nanna! Not quite the anniversary I would have expected but we still had a charming afternoon and hopefully we can make up for it next year by doing something fun. And of course, we have each other and are still ridiculously in love, which is all you really need. My fabulous friend Nick who was popping in on his way from Australia to Cannes cooked us a yummy dinner that evening and entertained us with his charming company. I'm hoping he's forgiven me for leaving him off my list of bald style icons.
Dinner round our breakfast bar!
So today (Tuesday) I went back into work and I feel as though I'm back on the mend after round 2. I'm still very tired and no doubt will be in bed by 8.30pm tonight, but I can feel my energy levels rise and I'm sleeping better. Once again I'm so grateful to have work to keep me occupied -- I don't know what I'd do without it! I really enjoyed plugging back in to projects today and spending time with my colleagues. I think this week has brought home the realisation of just how long a slog the chemotherapy course really will be. But I'm a quarter of the way there now, and need to keep strong and positive until the end. Thanks again everyone for your kind words and messages, they are definitely keeping me going.
In the sunny Barbican Conservatory.
My beautiful peacock-adorned headscarf is a vintage 1950s scarf from my friend Bree.
My beautiful peacock-adorned headscarf is a vintage 1950s scarf from my friend Bree.
Tuesday, 9 May 2017
Chemo #2
Yesterday I was back at St Bart's for round 2 of chemo, after a lovely, relaxed weekend of fun, making the most of my last few days of relatively good energy levels. I did a few hours of work on Monday morning and then headed to the hospital for my 3pm appointment. One of the ladies I met at Saturday's meet-up lunch joked that the chemo ward at St Bart's is a little like a day spa, as it's on the 7th floor of the hospital with some pretty spectacular panoramic views of the city. Everyone gets their own plush chair, their own dedicated nurse, in smaller rooms of about 5-6 per room. Almost as if to confirm this fantasy, yesterday there was a lovely Italian masseuse who was offering complementary therapies, so I had a relaxing shiatsu foot massage while my drip sent the chemo drugs through my cannula. It really helped me relax and lowered my anxiety levels, what a fabulous idea. She started out as a volunteer one day a week outside of her own practice, but now she's employed by a charity to come to St Bart's every Monday to give out treatments. Unfortunately, from my next session I'm back on the Wednesday cycle, but it was a real treat.
I had the same treatments as last time, including the Doxorubicin, which the nurse, J___, administered by hand. This one is nicknamed 'The Red Devil', due to its extensive side-effects. It can also cause heart failure, which is why I had my heart checked out before starting. It's pretty nasty. It also turns my pee pink!
I chatted with a few other patients on the ward, including one cheery girl who was on her third batch of chemo! Her cancer spread from her breast to her lung, and it's just spread to her brain. But she was remarkably upbeat, chatting familiarly with all the nurses and sending me her facebook page. I love how resilient people are in the face of adversity. It's so inspiring.
The computer systems are still down at St Bart's and apparently the back-up has also been attacked, so everything is still being written out by hand, and triple checked with the consultants. However, the nurses are expected to get through the same number of patients in a day, leaving many of them somewhat frazzled. It's quite distressing seeing first hand the negative impact on the NHS which has been brought about by the Tory government. Although the care I am receiving is exceptional, the staff are all overworked, and yesterday the nurses were even joking about leaving the NHS and getting a job in Asda, as it pays better and is less stressful! It's maddening for me, someone who is currently having their life saved by the NHS, to know that in 10-20 years time it might not exist and I would have a very different prognosis.
So after three hours, I was all done, and this time my mum popped by the ward, having taken the train from Lancaster to stay with us for a few days. Tanai went back to work today and mum has been looking after me, making delicious food and keeping me company. Thus far, I have responded much better than the first time, in terms of side-effects. I slept fitfully last night but didn't suffer as much as last time with the nausea. On the day after chemo #1, I didn't leave my PJs, but today I got dressed and we went for a little walk round the Barbican. I even baked a batch of ginger biscuits to help combat the nausea! So I'm hoping I stay this way, and don't crash later instead. I'll keep you posted.
I had the same treatments as last time, including the Doxorubicin, which the nurse, J___, administered by hand. This one is nicknamed 'The Red Devil', due to its extensive side-effects. It can also cause heart failure, which is why I had my heart checked out before starting. It's pretty nasty. It also turns my pee pink!
I chatted with a few other patients on the ward, including one cheery girl who was on her third batch of chemo! Her cancer spread from her breast to her lung, and it's just spread to her brain. But she was remarkably upbeat, chatting familiarly with all the nurses and sending me her facebook page. I love how resilient people are in the face of adversity. It's so inspiring.
The computer systems are still down at St Bart's and apparently the back-up has also been attacked, so everything is still being written out by hand, and triple checked with the consultants. However, the nurses are expected to get through the same number of patients in a day, leaving many of them somewhat frazzled. It's quite distressing seeing first hand the negative impact on the NHS which has been brought about by the Tory government. Although the care I am receiving is exceptional, the staff are all overworked, and yesterday the nurses were even joking about leaving the NHS and getting a job in Asda, as it pays better and is less stressful! It's maddening for me, someone who is currently having their life saved by the NHS, to know that in 10-20 years time it might not exist and I would have a very different prognosis.
So after three hours, I was all done, and this time my mum popped by the ward, having taken the train from Lancaster to stay with us for a few days. Tanai went back to work today and mum has been looking after me, making delicious food and keeping me company. Thus far, I have responded much better than the first time, in terms of side-effects. I slept fitfully last night but didn't suffer as much as last time with the nausea. On the day after chemo #1, I didn't leave my PJs, but today I got dressed and we went for a little walk round the Barbican. I even baked a batch of ginger biscuits to help combat the nausea! So I'm hoping I stay this way, and don't crash later instead. I'll keep you posted.
Mum doing some batch cooking!
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