Today I went to see my breast surgeon, Miss L____, for an appointment we had scheduled a while ago. The original plan was for me to have my preventative oophorectomy back in February, recover from that, write my masters dissertation, and then have my preventative double mastectomy in September. As you know. things have not gone quite to plan, and I'm now recovering from much more major surgery, and undergoing a course of chemotherapy.
Miss L____ gave me a brief breast examination, and didn't find anything untoward. She then caught up with the various things I've done since we last saw each other, in preparation for my surgery. I've discussed all my options with my Breast Care Nurse and decided to opt for a bilateral mastectomy without reconstruction. I've had my medical photos taken (these were taken at the Royal London Hospital and it was a very strange experience, almost like a fashion shoot! And there was me, naked from the waist up, in front of all the professional photography lights having my 'before' photos taken!). And I've seen the Cancer Psychologist, to get signed off for not having reconstruction.
Today's news was slightly annoying. Apparently when someone has had such serious surgery as I've just had, they like to wait at least 2 years before performing any further elective surgery. Two years! That would mean I cannot have my breasts removed until April 2021. As you can imagine, my recent second cancer diagnosis has made me feel a sense of urgency about getting my breasts removed. I know that this BRCA gene mutation is lethal, and my boobs feel like two ticking timebombs attached to my chest! I just want to get rid of them ASAP. So we talked through everything, and I have a lot of things going in my favour. I'm young, fit, a non-smoker, and I'm recovering well from my recent surgery. Also I'm doing well with the carboplatin so far. And I don't want reconstruction, so the surgery I'm opting for is less major than if I was having reconstruction. Apparently they have a big meeting once a quarter with all of the consultants from all the different departments, kind of like an uber-MDM, where both the gynae team and the breast team will attend, so they are going to discuss my case in the next meeting, at the beginning of July. Miss L____ knows that I'd like to have the surgery as soon as possible so she will put my case forward, and they will discuss when is the earliest possible time they're happy to operate. And fingers crossed it is not too far away!
In the meantime, she's going to check that my annual MRI, mammogram and ultrasound are all booked in for October, so that I can at least get some peace of mind that there's nothing sinister growing in there in the meantime. And I'm going to see her again in September once I'm finished with chemo, so we can talk about next steps, and hopefully get a date in the diary. It's a bit disappointing as I was keen to get it done, out of the way, and be on the road to proper recovery, with all treatment (hopefully) behind me. But of course I want to do what's right for my body, and to get the balance right of reducing my risk of a new cancer, while also ensuring my body has had enough time to recover from my recent surgery. So for now, I shall wait.
In other news, I am planning to go back to work on Monday. I've been off work for 3 months in total, which feels like an incredibly huge amount of time, but I really needed that time to recover from both surgeries. I'm going to work through chemo as I did before, and I've moved my day off each week to Thursdays (as I only work 4 days a week) to accommodate my chemo treatment every 3 weeks, and I will work from home on Fridays on my chemo weeks. I will also have some flexibility if I get hit by cancer-related fatigue, in that I can take short days if necessary. My employers have been incredibly supportive throughout this whole malarkey, which is great. I'm excited about going back, I have missed work a lot, and my team especially, but I am also quite nervous. I've never had such a long time off work before and I know that lots of things have changed since I left back at the end of February. Some people that I worked closely with have left, and others have been hired in my team who I've never met. I've also been spending my days doing very low-key activities, such as reading, crocheting, doing little walks. And taking afternoon naps! All this has been essential for my recovery, as I have prioritised physical healing and my mental health. But now I have to get back up to speed, pick up the pace of life I had before and go back to my leadership role. Hopefully I will get back to it like a duck to water, but there will be butterflies on Monday morning for sure!
Tuesday 28 May 2019
Friday 17 May 2019
Chemo begins (again!)
Yesterday afternoon I had my first chemo of this second batch. We went to visit the 'Fearless Girl' statue in Paternoster Square just before my chemo appointment, so I could take some 'fearless' vibes in with me. So far I'm feeling pretty good. I slept well, I have very mild nausea but it didn't stop me eating a delicious dinner last night and breakfast this morning, so that's a good sign. I'm being cautious though, as sometimes the side effects don't kick in for a few days, so let's not get too jubilant. Definitely a lot better than my first chemo last time. (Tanai and I have been reminiscing about it, and I unearthed a few buried memories!) I also started taking my anti-sickness meds and steroids this morning and although I only have to take them for 3 days, I remember that some of my worst side effects last time were from the drugs designed to combat the side effects of chemo (ah, the irony).
So, a bit of an update on the last few days. I have been doing quite a lot of prep for chemo, including spending most of Wednesday in hospital testing my kidney function, as that's how they determine the chemo dose. I had to go in at 9am to have a cannula fitted, and then they injected me with radioactivity, and then I had to go back every hour until 3pm to get my bloods taken from the cannula. The nurse got the cannula in first go (we were jubilant, remember my veins were destroyed by my last chemo) but unfortunately three different nurses tried 8 times to get the needle in for the radioactivity, and every time they found a vein it collapsed. In the end, they had to put it in my foot! I've never had needles in my foot before, it was kind of weird, but it worked.
On Wednesday I also had deja-vu as I went in for my pre-chemo appointment! The ward sister said 'Welcome back' and then explained that of course she wasn't welcoming me back as in 'isn't it great you're back' but that at least if I have to be there on the chemo ward there is a warm welcome for me. We rattled through the instructions, because of course I'm an old hand at this, but I was pleased to hear there have been some changes since I last had chemo. They always solicit patient feedback and they are responding to that feedback. Sometimes I would wait for hours in the waiting room or on the ward, as the drugs can take ages to come from the pharmacy. They have apparently improved the pharmacy procedure, and they are also communicating better about when things will be ready, so that instead of 'oh you're on the list' they can at least estimate when they will be ready. And they are introducing a pager system, where you will receive one of those little buzzers you get in some restaurants, and you can go off and hang out in a cafe, the Bart's quad or the Maggie's centre, and they will buzz you when it's time to come back up to the ward. Pretty cool!
It's been 6 weeks since my surgery and I'm healing well. Scar update photo below, so don't scroll if you don't want to see it! It's all completely healed now, which is great. I'm massaging it twice a day with oil and it's looking very neat and not too bad. I'm doing as many little walks as I can, to get my fitness levels back up slowly, and some gentle physio to get my strength back. My resting heart rate has gone right back up to 75 after the surgery (it was 58 when I was at my fittest last year) so I'm keen to get this down to improve my general health. After a couple of weeks of little walks it is already down to 72 so that's good. But it doesn't take much these days to get my heart rate up, so I can see my fitness levels have a long way to go. I love how much my fitbit helps me monitor my own health and fitness. One thing that I'm struggling with a bit since surgery is my changed digestive system. When they had me opened up on the operating table, the surgeon removed my intestines to have a look at them and check for cancer, so there has been a readjustment period since he put them back in. Also they have so much more room now as loads of other things have been removed! I've been eating really healthy food and trying to make sure I have plenty of fibre, but every time I eat, my stomach gets hard and swells right up. It's swollen quite a bit anyway, but it gets really distended after a meal. I suppose it will take a while to get back to normal (or a 'new normal') but it's something I have to be really careful about. And it's being really sensitive to certain foods, especially sweet ones. I can't eat too much in one sitting and I'm avoiding eating too many sweet things. It's great that my body can talk to me and tell me what it needs!
Okay here's the scar. It's actually much longer, it extends further below the belly button than above, but I'm not flashing my pubes online, ha ha. I love the way the surgeon swerved to avoid my belly button, even though that already has scars in as it's where they put the camera in for my first surgery!
So unless anything major happens, I'll update you all after my second chemo on 6 June.
Fearless girls
Receiving my infusion
Crafting during chemo
So, a bit of an update on the last few days. I have been doing quite a lot of prep for chemo, including spending most of Wednesday in hospital testing my kidney function, as that's how they determine the chemo dose. I had to go in at 9am to have a cannula fitted, and then they injected me with radioactivity, and then I had to go back every hour until 3pm to get my bloods taken from the cannula. The nurse got the cannula in first go (we were jubilant, remember my veins were destroyed by my last chemo) but unfortunately three different nurses tried 8 times to get the needle in for the radioactivity, and every time they found a vein it collapsed. In the end, they had to put it in my foot! I've never had needles in my foot before, it was kind of weird, but it worked.
On Wednesday I also had deja-vu as I went in for my pre-chemo appointment! The ward sister said 'Welcome back' and then explained that of course she wasn't welcoming me back as in 'isn't it great you're back' but that at least if I have to be there on the chemo ward there is a warm welcome for me. We rattled through the instructions, because of course I'm an old hand at this, but I was pleased to hear there have been some changes since I last had chemo. They always solicit patient feedback and they are responding to that feedback. Sometimes I would wait for hours in the waiting room or on the ward, as the drugs can take ages to come from the pharmacy. They have apparently improved the pharmacy procedure, and they are also communicating better about when things will be ready, so that instead of 'oh you're on the list' they can at least estimate when they will be ready. And they are introducing a pager system, where you will receive one of those little buzzers you get in some restaurants, and you can go off and hang out in a cafe, the Bart's quad or the Maggie's centre, and they will buzz you when it's time to come back up to the ward. Pretty cool!
The Bart's quad and fountain
It's been 6 weeks since my surgery and I'm healing well. Scar update photo below, so don't scroll if you don't want to see it! It's all completely healed now, which is great. I'm massaging it twice a day with oil and it's looking very neat and not too bad. I'm doing as many little walks as I can, to get my fitness levels back up slowly, and some gentle physio to get my strength back. My resting heart rate has gone right back up to 75 after the surgery (it was 58 when I was at my fittest last year) so I'm keen to get this down to improve my general health. After a couple of weeks of little walks it is already down to 72 so that's good. But it doesn't take much these days to get my heart rate up, so I can see my fitness levels have a long way to go. I love how much my fitbit helps me monitor my own health and fitness. One thing that I'm struggling with a bit since surgery is my changed digestive system. When they had me opened up on the operating table, the surgeon removed my intestines to have a look at them and check for cancer, so there has been a readjustment period since he put them back in. Also they have so much more room now as loads of other things have been removed! I've been eating really healthy food and trying to make sure I have plenty of fibre, but every time I eat, my stomach gets hard and swells right up. It's swollen quite a bit anyway, but it gets really distended after a meal. I suppose it will take a while to get back to normal (or a 'new normal') but it's something I have to be really careful about. And it's being really sensitive to certain foods, especially sweet ones. I can't eat too much in one sitting and I'm avoiding eating too many sweet things. It's great that my body can talk to me and tell me what it needs!
Okay here's the scar. It's actually much longer, it extends further below the belly button than above, but I'm not flashing my pubes online, ha ha. I love the way the surgeon swerved to avoid my belly button, even though that already has scars in as it's where they put the camera in for my first surgery!
So unless anything major happens, I'll update you all after my second chemo on 6 June.
Thursday 2 May 2019
Pathology results and a plan
Bit of an update this one, brace yourselves. Last week I saw someone from my surgeon's team at the Royal London Hospital for my post-op pathology results (my surgeon was on holiday so I saw someone new). I received great news, they didn't find anything dodgy in any of the organs, glands and other stuff they removed during my major surgery on 2 April. So the tubo-ovarian cancer that they found was limited to just a 1.7mm sized tumour in only one of my fallopian tubes, which they had already removed at the end of February. This is good news on a number of levels. It means they got it all, so there's none left to remove or nuke, but the surgery was not in vain either. As I carry the BRCA1 mutation, this increases the likelihood of it coming back. But now they've removed pretty much everything it could possibly come back in, so I'm giving myself the best possible chance of remaining cancer-free after all of this and getting on with my life. The surgeon said that in their MDM (Multi-Disciplinary Meeting) they had argued about whether or not I even needed to have chemotherapy! Medicine is not an exact science, they just have to go on studies of people with similar cancer situations to mine; their own experience; and a bit of instinct. And as they were completely divided as a group, patient opinion also forms a part of it. Tanai and I have been reading studies about ovarian cancer, and in instances where the cancer was contained as mine was, patients who have the complete surgery I had, followed by a course of chemotherapy, have the best outcomes. For me it's a no-brainer -- if I didn't have chemo and it came back in the future, I would never forgive myself for not giving myself the best possible chance. So we opted 'yes' for chemo.
So yesterday we went to the general oncology department at Bart's for my first appointment there. The team leader is a woman called Dr M_____ who was lovely and clearly was one of the people in the MDM who voted 'for' chemo, so she was pleased with my decision. However, the other good news is that they are not going to give me two different drugs as they originally planned, they are only going to give me one drug, called Carboplatin, and hair loss is not one of the common side effects of this! I'm so pleased I will get to keep my hair this time. And I should tolerate it pretty well as it's not as harsh as the chemo drugs I had for breast cancer, so I should find it less horrid. This has made me feel so much better about the next few months, knowing that I have every hope of tolerating the drug and recovering afterwards. So my first chemo is on 16 May, then they will be every 3 weeks for 6 rounds, with my final infusion on 29 August, all being well. The routine will be that I get my bloods done the week before, see the oncologist on the Wednesday and if all is well I'll have my chemo on the Thursday each time. I got my bloods done this morning for the first round so I'm all set to go.
Interestingly, the oncologist I saw yesterday was Dr H____, and he was actually the registrar who agreed to refer me for the BRCA gene test in the first place, after my oncology team had refused me 3 times! He must have been stepping in for someone or something, as I have not seen him since then. It was great to see him again and get the chance to thank him. He was a bit taken aback when I said 'Ah we've met before! I have to thank you, I think you saved my life!'. Bless him, he's quite young and I think the only reason he referred me was because he was intimidated by me! But it has had a good outcome, and my words may perhaps alter his decision-making in future, which could help save someone else's life, who knows. I do think it's important to give feedback to my medical team where I can. Like the surgeon said, medicine is not an exact science, so if they can have the benefit of real life experience, it can help them in their decision-making.
So, other clinic appointments I have had over the last few weeks. I went to the lymphodema clinic again for a follow-up. I was looking forward to this visit, as I was only being treated for my right arm last time (due to 2 lymph nodes being removed from my right armpit during my breast surgery), but now that I've had all my pelvic lymph nodes removed, and my para-aortic lymph nodes, I wanted to ask questions about what other lymphodema risks I have, and what preventative measures I could take to minimise the risk of problems. Unfortunately the regular nurse had left, and the guy covering her position had no idea about anything! What a wasted visit. They have booked me for another appointment in 3 months' time, and ordered me some compression stockings in the meantime, but I was pretty irritated by this!
I also saw a member of the Cancer Psychology team, for an appointment which had been scheduled to discuss my upcoming preventative mastectomy. Rather bizarrely, if you wish to have a mastectomy without reconstruction, they insist that you get 'signed off' by a psychologist first (there is no equivalent process for women who wish to have reconstructive surgery). However, upon learning about my 'developments' we ended up talking about all sorts, and we have agreed to a couple more sessions before she'll sign me off for the mastectomy surgery. It was a good chat, and she gave me some more useful analogies to think about. One was about allowing myself to feel emotional. I mentioned that I am definitely feeling more emotional this time round (I have 'leaky eyes'!), and that I'm actually okay with this, as I'm finding crying to be a welcome release (I definitely don't think I cried enough the first time round!). She said to imagine I was in a swimming pool and the 'negative' emotions were like an inflatable ball I was trying to hold under the water. If you try to keep the ball under the water, you find that you're using all your energy to keep it there, and you have no time or energy to do other things, such as enjoy being in the water! Whereas if you simply let the ball float, and push it away from time to time, you'll be able to splash about and enjoy yourself, and when the ball comes back again you can just push it away and get on with having fun. I really liked this visual metaphor, and I think that's how I feel about my emotions this time around.
I've also been seeing the nurse at my GP every other day, and she's been re-packing and re-dressing the small wound at the bottom end of my scar. She's very pleased with how this is progressing, she says it's getting smaller and looking very clean, so that's good.
Generally in myself I'm feeling stronger and like I have more energy. I can just about put my own shoes and socks on now, which is useful! And I am starting to do little walks on my own and some gentle exercise. I'm sleeping well and feeling less pain. I even got out to the theatre last night, which was a huge achievement! We went to watch the London Marathon near Blackfriar's Bridge last weekend, as it's just a short walk from our flat, and I stood there for over an hour watching the runners. I felt very emotional seeing everyone running for cancer charities that have helped me, and I'm inspired to do something similar once I am well again, to raise some money for Bart's Hospital, which has saved my life twice! We shall see what I come up with.
Thanks for persevering with this long update. Feeling good, on the right track, let the chemo begin!
So yesterday we went to the general oncology department at Bart's for my first appointment there. The team leader is a woman called Dr M_____ who was lovely and clearly was one of the people in the MDM who voted 'for' chemo, so she was pleased with my decision. However, the other good news is that they are not going to give me two different drugs as they originally planned, they are only going to give me one drug, called Carboplatin, and hair loss is not one of the common side effects of this! I'm so pleased I will get to keep my hair this time. And I should tolerate it pretty well as it's not as harsh as the chemo drugs I had for breast cancer, so I should find it less horrid. This has made me feel so much better about the next few months, knowing that I have every hope of tolerating the drug and recovering afterwards. So my first chemo is on 16 May, then they will be every 3 weeks for 6 rounds, with my final infusion on 29 August, all being well. The routine will be that I get my bloods done the week before, see the oncologist on the Wednesday and if all is well I'll have my chemo on the Thursday each time. I got my bloods done this morning for the first round so I'm all set to go.
Interestingly, the oncologist I saw yesterday was Dr H____, and he was actually the registrar who agreed to refer me for the BRCA gene test in the first place, after my oncology team had refused me 3 times! He must have been stepping in for someone or something, as I have not seen him since then. It was great to see him again and get the chance to thank him. He was a bit taken aback when I said 'Ah we've met before! I have to thank you, I think you saved my life!'. Bless him, he's quite young and I think the only reason he referred me was because he was intimidated by me! But it has had a good outcome, and my words may perhaps alter his decision-making in future, which could help save someone else's life, who knows. I do think it's important to give feedback to my medical team where I can. Like the surgeon said, medicine is not an exact science, so if they can have the benefit of real life experience, it can help them in their decision-making.
So, other clinic appointments I have had over the last few weeks. I went to the lymphodema clinic again for a follow-up. I was looking forward to this visit, as I was only being treated for my right arm last time (due to 2 lymph nodes being removed from my right armpit during my breast surgery), but now that I've had all my pelvic lymph nodes removed, and my para-aortic lymph nodes, I wanted to ask questions about what other lymphodema risks I have, and what preventative measures I could take to minimise the risk of problems. Unfortunately the regular nurse had left, and the guy covering her position had no idea about anything! What a wasted visit. They have booked me for another appointment in 3 months' time, and ordered me some compression stockings in the meantime, but I was pretty irritated by this!
I also saw a member of the Cancer Psychology team, for an appointment which had been scheduled to discuss my upcoming preventative mastectomy. Rather bizarrely, if you wish to have a mastectomy without reconstruction, they insist that you get 'signed off' by a psychologist first (there is no equivalent process for women who wish to have reconstructive surgery). However, upon learning about my 'developments' we ended up talking about all sorts, and we have agreed to a couple more sessions before she'll sign me off for the mastectomy surgery. It was a good chat, and she gave me some more useful analogies to think about. One was about allowing myself to feel emotional. I mentioned that I am definitely feeling more emotional this time round (I have 'leaky eyes'!), and that I'm actually okay with this, as I'm finding crying to be a welcome release (I definitely don't think I cried enough the first time round!). She said to imagine I was in a swimming pool and the 'negative' emotions were like an inflatable ball I was trying to hold under the water. If you try to keep the ball under the water, you find that you're using all your energy to keep it there, and you have no time or energy to do other things, such as enjoy being in the water! Whereas if you simply let the ball float, and push it away from time to time, you'll be able to splash about and enjoy yourself, and when the ball comes back again you can just push it away and get on with having fun. I really liked this visual metaphor, and I think that's how I feel about my emotions this time around.
I've also been seeing the nurse at my GP every other day, and she's been re-packing and re-dressing the small wound at the bottom end of my scar. She's very pleased with how this is progressing, she says it's getting smaller and looking very clean, so that's good.
Generally in myself I'm feeling stronger and like I have more energy. I can just about put my own shoes and socks on now, which is useful! And I am starting to do little walks on my own and some gentle exercise. I'm sleeping well and feeling less pain. I even got out to the theatre last night, which was a huge achievement! We went to watch the London Marathon near Blackfriar's Bridge last weekend, as it's just a short walk from our flat, and I stood there for over an hour watching the runners. I felt very emotional seeing everyone running for cancer charities that have helped me, and I'm inspired to do something similar once I am well again, to raise some money for Bart's Hospital, which has saved my life twice! We shall see what I come up with.
Thanks for persevering with this long update. Feeling good, on the right track, let the chemo begin!
Subscribe to:
Posts (Atom)