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.
Subscribe to:
Posts (Atom)