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!
Showing posts with label work. Show all posts
Showing posts with label work. Show all posts
Tuesday, 28 May 2019
Monday, 20 November 2017
New tattoos
This week I got three new tattoos! Sadly nothing as exciting as my first tattoo. These are three small black dots, given to me by the radiographer at St Bart's so they can align the laser beams while they're giving me radiotherapy. One is right in the middle of my chest and the others are on either side of my body, about where your elbow is when your arms are by your side. Radiotherapy has to be incredibly precise and it takes place every weekday for a month, so they can't afford to give me dots that might rub off over the course of that time. I was measured up on Wednesday morning, had my CT scan, and now they are fully planning what dosage and angles and everything, and I'm scheduled to start on 23 November (this coming Thursday) so if all goes to plan I'll be finished with radiotherapy just in time for Christmas.
The last couple of weeks have been pretty tough. I developed an infection in my armpit wound and while they drained some liquid out and sent it off to the lab to be tested, they prescribed me with a general course of antibiotics to get rid of it. Unfortunately a week later I found out that the infection was resistant to penicillin, so they had to switch me onto a different kind of antibiotics. So I still have an infection and I feel as though I lost a whole week trying to get rid of it. There is a lot of pain around my wound, it's red and inflamed, and I've lost a lot of the range of motion I was gaining by doing my daily physio exercises. I'm still doing them but recovery is much slower now. I'm also feeling generally really unwell. I'm tired, off my food, and a little impatient to be back on the road to recovery. I've been back at work but I've struggled with the long days and I'm not feeling very resilient at the moment. Plus the antibiotics are giving me diarrhoea which isn't great! I have struggled a bit with my commute, and the other day I had to say aloud on the tube, 'please could someone give me their seat', as I really couldn't remain standing. These kinds of situations can be pretty challenging for someone who is usually so independent and capable like me.
And, to be honest, I'm feeling pretty emotionally vulnerable. It's difficult because I had such positive pathology results and so people are jubilant, but they're saying things like 'So you're almost done!', or 'You did it!', or they think I'm finished with treatment now. But there's still so much treatment to come, and I'm running on the fumes of an empty tank every day in terms of energy, I just don't feel like celebrating. Radiotherapy is apparently also very draining, so I'm genuinely wondering how I'm going to have the strength to get through the next couple of months. And after that, I still have a whole heap of other treatment still to come. I'll still be a regular at St Bart's for the forseeable future, and I'll still be dealing with side effects every day, managing the changes in my body and trying to get on with my life. People talk about a 'new normal' after cancer treatment and now I understand what they mean. I need to spend the next few months working out what my 'new normal' is because Past Carmel is never coming back.
So this weekend Tanai and I did some talking, thinking and planning, to come up with some practical measures to help me get through the next few months, and also some emotional parameters, to make sure that I don't bottle up my emotions but allow myself to feel the way I feel, to acknowledge the emotions, and then allow them to pass, without consuming me. I'm feeling a little more emotionally robust, much more prepared for the next few stages of treatment, and more able to get on with things. I've reduced my hours at work slightly, to 10am-4pm, so that I can avoid travelling at rush hour, and preserve some strength and energy during radiotherapy, while also ensuring that I'm there for my team. This should take me to the end of the year, and then I can start 2018 afresh, and put 2017 behind me. So next stop: radiotherapy.
The last couple of weeks have been pretty tough. I developed an infection in my armpit wound and while they drained some liquid out and sent it off to the lab to be tested, they prescribed me with a general course of antibiotics to get rid of it. Unfortunately a week later I found out that the infection was resistant to penicillin, so they had to switch me onto a different kind of antibiotics. So I still have an infection and I feel as though I lost a whole week trying to get rid of it. There is a lot of pain around my wound, it's red and inflamed, and I've lost a lot of the range of motion I was gaining by doing my daily physio exercises. I'm still doing them but recovery is much slower now. I'm also feeling generally really unwell. I'm tired, off my food, and a little impatient to be back on the road to recovery. I've been back at work but I've struggled with the long days and I'm not feeling very resilient at the moment. Plus the antibiotics are giving me diarrhoea which isn't great! I have struggled a bit with my commute, and the other day I had to say aloud on the tube, 'please could someone give me their seat', as I really couldn't remain standing. These kinds of situations can be pretty challenging for someone who is usually so independent and capable like me.
Commuting
And, to be honest, I'm feeling pretty emotionally vulnerable. It's difficult because I had such positive pathology results and so people are jubilant, but they're saying things like 'So you're almost done!', or 'You did it!', or they think I'm finished with treatment now. But there's still so much treatment to come, and I'm running on the fumes of an empty tank every day in terms of energy, I just don't feel like celebrating. Radiotherapy is apparently also very draining, so I'm genuinely wondering how I'm going to have the strength to get through the next couple of months. And after that, I still have a whole heap of other treatment still to come. I'll still be a regular at St Bart's for the forseeable future, and I'll still be dealing with side effects every day, managing the changes in my body and trying to get on with my life. People talk about a 'new normal' after cancer treatment and now I understand what they mean. I need to spend the next few months working out what my 'new normal' is because Past Carmel is never coming back.
So this weekend Tanai and I did some talking, thinking and planning, to come up with some practical measures to help me get through the next few months, and also some emotional parameters, to make sure that I don't bottle up my emotions but allow myself to feel the way I feel, to acknowledge the emotions, and then allow them to pass, without consuming me. I'm feeling a little more emotionally robust, much more prepared for the next few stages of treatment, and more able to get on with things. I've reduced my hours at work slightly, to 10am-4pm, so that I can avoid travelling at rush hour, and preserve some strength and energy during radiotherapy, while also ensuring that I'm there for my team. This should take me to the end of the year, and then I can start 2018 afresh, and put 2017 behind me. So next stop: radiotherapy.
Friday, 17 March 2017
New considerations
Last night we had a huge fundraising event at work, our biannual gala which raises a significant amount of the budget we need to do our charitable work. It's one of those events where everyone spends months working their arses off in the lead-up, and then in one night it's all over! It's a glittery, starry affair, featuring entertainment and a fancy dinner, and the fundraising elements include a live auction, a silent auction and a raffle.
It was only when I was trying to decide on my outfit that I realised that I ran the risk of having nothing to wear. The dressings from my most recent biopsies extended out into my cleavage and quite high on my chest, and almost all of my 'dressy' dresses are V-neck or at least a little bit cleavage-revealing. I suppose I've always opted for flaunting my assets (ie dresses that accentuate my lovely boobs and small waist) and hiding my bum/thighs (I often have a very 50s style). In fact, I found only 2 frocks which had a high enough neckline to cover the dressings and not cling to, and therefore reveal, the pressure bandages! Hmmmm, I hope a complete wardrobe change is not required in the future. So I popped one on, slapped on a bit of make-up and pepped myself up for the evening.
I had actually toyed with the notion of bowing out and not working the event, but I'm really glad I persuaded myself to go. It was a fascinating evening and so intriguing to see a live auction in action! Part of the reason I wavered was because my manager took me off the official list of helpers, so I didn't have a specific task for the evening. I'm sure she was doing this to protect me, to make me feel like I wasn't pressured into coming if I didn't want to, and to prepare me for the inevitability of the future, where I will probably have to duck out of work events and projects, but it actually ended up making me quite upset. I felt as though I was being pushed out before I even have my prognosis, as though she is being practical and taking me off projects already, knowing that I will probably be out of action work-wise in just a few weeks, or because she now sees me as unreliable. I take so much pride in my work, and I'm so dedicated to my job and my team, I took this quite badly, feeling useless and unappreciated. I know this is my own issue, and I'm extremely grateful to my workplace for being so flexible and understanding about my diagnosis, but I couldn't help my emotional response.
The other new feelings I felt during the evening were about the fact that a small handful of people at work now know about my diagnosis, even though I've not made it completely public. So a couple of them came up to me during the event and discreetly said lovely things like 'I heard your news, I'm so sorry'. I wasn't prepared for how much this would hit me: I felt a prickling behind my eyes, the shock of hearing the news anew. I know they mean well, and again, I'm so grateful for their support and positive wishes, but it's a new feeling for me to be on the receiving end of this sympathy; this pity. I was then very conscious for the rest of the evening of the differentiation between those colleagues who know and those who don't. I felt self-conscious when smiling or laughing with colleagues or guests, and being observed by people who knew my news. And the worst of it was, feeling terrible for the potential negative impact my presence had on those who knew. I started to think that perhaps I had been taken off the list not for my own sake, but for the sake of others. Those who don't wish to be reminded of my situation. Those who don't want a dampener put on a celebratory, fun evening.
I'm sure this isn't the case, but I'm intrigued by these new feelings, these new considerations, and I'm committed to documenting this journey with honesty, so there it is. Let's see how these feelings progress as my news becomes more widely known, and if I develop better coping mechanisms as I repeatedly experience the response of others. I know I somehow have to try to find a way of prioritising self-care over protecting the feelings of others. I think this is going to be quite a challenge.
In the end, I snuck off shortly after midnight, when the evening was winding down and the staff were starting to feel relieved of their duties. I know that the night kicked on until quite late, but I just wasn't feeling it. In a way I wish I'd summoned up the energy to celebrate and dance with my colleagues, but these complex new thoughts are somewhat getting in the way of unbridled enjoyment.
It was only when I was trying to decide on my outfit that I realised that I ran the risk of having nothing to wear. The dressings from my most recent biopsies extended out into my cleavage and quite high on my chest, and almost all of my 'dressy' dresses are V-neck or at least a little bit cleavage-revealing. I suppose I've always opted for flaunting my assets (ie dresses that accentuate my lovely boobs and small waist) and hiding my bum/thighs (I often have a very 50s style). In fact, I found only 2 frocks which had a high enough neckline to cover the dressings and not cling to, and therefore reveal, the pressure bandages! Hmmmm, I hope a complete wardrobe change is not required in the future. So I popped one on, slapped on a bit of make-up and pepped myself up for the evening.
Pre-event toilet selfie!
I had actually toyed with the notion of bowing out and not working the event, but I'm really glad I persuaded myself to go. It was a fascinating evening and so intriguing to see a live auction in action! Part of the reason I wavered was because my manager took me off the official list of helpers, so I didn't have a specific task for the evening. I'm sure she was doing this to protect me, to make me feel like I wasn't pressured into coming if I didn't want to, and to prepare me for the inevitability of the future, where I will probably have to duck out of work events and projects, but it actually ended up making me quite upset. I felt as though I was being pushed out before I even have my prognosis, as though she is being practical and taking me off projects already, knowing that I will probably be out of action work-wise in just a few weeks, or because she now sees me as unreliable. I take so much pride in my work, and I'm so dedicated to my job and my team, I took this quite badly, feeling useless and unappreciated. I know this is my own issue, and I'm extremely grateful to my workplace for being so flexible and understanding about my diagnosis, but I couldn't help my emotional response.
The other new feelings I felt during the evening were about the fact that a small handful of people at work now know about my diagnosis, even though I've not made it completely public. So a couple of them came up to me during the event and discreetly said lovely things like 'I heard your news, I'm so sorry'. I wasn't prepared for how much this would hit me: I felt a prickling behind my eyes, the shock of hearing the news anew. I know they mean well, and again, I'm so grateful for their support and positive wishes, but it's a new feeling for me to be on the receiving end of this sympathy; this pity. I was then very conscious for the rest of the evening of the differentiation between those colleagues who know and those who don't. I felt self-conscious when smiling or laughing with colleagues or guests, and being observed by people who knew my news. And the worst of it was, feeling terrible for the potential negative impact my presence had on those who knew. I started to think that perhaps I had been taken off the list not for my own sake, but for the sake of others. Those who don't wish to be reminded of my situation. Those who don't want a dampener put on a celebratory, fun evening.
I'm sure this isn't the case, but I'm intrigued by these new feelings, these new considerations, and I'm committed to documenting this journey with honesty, so there it is. Let's see how these feelings progress as my news becomes more widely known, and if I develop better coping mechanisms as I repeatedly experience the response of others. I know I somehow have to try to find a way of prioritising self-care over protecting the feelings of others. I think this is going to be quite a challenge.
In the end, I snuck off shortly after midnight, when the evening was winding down and the staff were starting to feel relieved of their duties. I know that the night kicked on until quite late, but I just wasn't feeling it. In a way I wish I'd summoned up the energy to celebrate and dance with my colleagues, but these complex new thoughts are somewhat getting in the way of unbridled enjoyment.
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