Pathology results (again!)

Today I went to see my breast surgeon, Miss L_____, for my post-op pathology results. They sent all the tissue they removed on 3 December to the lab, and it's great news: there was no evidence of disease in any of it. So I'm once again officially cancer-free and on the road to recovery. It felt quite emotional actually, and a huge relief. How great to get that news just in time for Christmas and the end of the year.

My surgery went really well. Here's a little update on it all.

Marked up with sharpies for surgery

So I went in on 3 December and was put under anaesthetic around midday, and woke up around 3pm. I had far fewer tubes and wires than last time, just a cannula in the inside of my left elbow for the anaesthetic and pain relief, and two drains coming out of either side of my torso just underneath where my breasts had been, held in place with stitches. I was quite woozy from the anaesthetic but felt great, and so relieved to have them removed at last. I have felt as though I had two ticking time bombs on my chest for the last few months! I managed some dinner on the ward and they let Tanai stay with me until quite late. The nurses were all totally wonderful and checked my blood pressure and temperature regularly through the night. I had my own room but still didn't manage to get any sleep! I think the adrenaline was pumping and I actually felt quite nervous so my body kept waking me back up every time I dozed off. Every time I wanted to go to the toilet I had to carry these two drain bottles with me, and it was all quite awkward, but I managed it.

Very woozy post-surgery dinner

One of my drains on the floor by my bed, draining from my body.

The next morning I was visited by various people, including the two surgeons who had removed my breasts. I hadn't realised but there was one surgeon on either side! I am quite intrigued as to which side was done by my amazing surgeon and which by her registrar, but I guess I'll never know. Both sides look great, really neat and tidy, so both of them did a fantastic job. I have no stitches either: they used glue. And I have been feeling remarkably pain-free, I've only taken a few paracetamol in the couple of weeks since my surgery. A nurse removed my drains under the supervision of a more senior nurse, watched by a student nurse. I had some lunch and then I was discharged. Home less than 24 hours after waking up from surgery, how incredible.

Just before my drains were removed. The boobless wonder!

Since then I have been mainly resting on the sofa, trying to do little walks each day and doing my physio exercises a few times a day. My range of motion is not bad, but I can't lift my arms too high, and I'm not supposed to be lifting anything heavier than a small glass of water. Tanai couldn't be away from work too long (this is my third surgery of the year after all!) so I've had a roster of amazing friends coming over to make me lunch each day, which has been lovely. I've started getting back into my studying, in anticipation of all the essays I have to complete next year, and I've been listening to lots of podcasts. I have bought a giant U-shaped pregnancy pillow which is really helping me to sleep well. And we are being very careful about infection risk, washing bedding, towels and PJs every day.

 The amazing pillow

One of the inevitabilities after surgery is a seroma. This is a gathering of fluid near the surgery site, which the drains would have drained away. Over the last couple of weeks I developed two seroma, right where my breasts had been. They looked like cute little a/b-cup boobs! But they were sloshy and uncomfortable, so when I saw my surgeon today she drained the liquid out of them, leaving me flat again. There was 90ml in the right one, and 150ml in the left one! Apparently I will probably need to go in a couple more times before my body learns to reabsorb the liquid itself. I feel much better now and it was quite emotional saying goodbye to Miss L_____. She was the one back in February 2017 who first told me I had breast cancer. What a rollercoaster it's been since then. And today we said goodbye, shook hands, and with a little bit of luck, that's the last of it.

Of course I still have various follow-up appointments, including one in January with my ovarian oncologist, but officially I'm now part of the 'open access follow-up' programme, which means I have to just contact them if anything feels strange and they'll see me. Given that there is very little left in my body for the cancer to grow in, I'm hoping that I don't have to go back in.

It really feels like a huge milestone, the end of a particularly challenging chapter of my life, and the beginning of a new one. I am marking this change in a number of other ways. We have given notice on our flat here in Clerkenwell, and we will move out in March. It's been lovely living here for 3 years and I was so incredibly lucky to live close to St Bartholomew's Hospital, one of the best cancer hospitals in the country, for my treatment. It's also been a gorgeous, sun-filled space to recover and convalesce. But for various reasons we've decided to move in the new year, partly to get somewhere cheaper and with more space, and partly to move out of central London and to somewhere a bit more 'local' and leafy. It's time to move on.

As you know, I continued to work all through my treatment, even through both my bouts of chemo, which, looking back on it all, was incredible. It was good for my mental health at first, but this year my mental health took quite a battering, and unfortunately work was contributing to a lot of that stress and negativity. So I took the astonishing decision to quit my job and go freelance! Perhaps a little rash, but cancer definitely makes you realise how important it is to feel happy and fulfilled in your career, especially given how much time we spend at work. I have been giving myself a little rest for the last few weeks, but in January I will start up with my own consultancy. I'm just getting my website ready now. And fingers crossed I will quickly find some paying work and make a go of it. I'm very excited about this development and I'm confident it will work out well. I've always wanted to be my own boss.

And finally, perhaps trivially (although it doesn't feel that trivial), I have realised that I will need a whole new wardrobe, and a whole new look. My body shape is completely different now. I am slender and flat on top, and due to my ovarian cancer surgery, I have permanent swelling in my lower torso, so all the lovely fitted 50s-style frocks I used to rock, just won't look right any more. I'm actually really enjoying wearing old t-shirts that my breasts used to distort, and I've even picked up a pair of Whistles trousers from a charity shop which I love. I've not owned a pair of trousers for years! I'm going to operate a 'one in, one out' policy, and only purchase new clothes when I've raised enough money from selling my old ones. I have so many lovely frocks, so I plan to ebay them all in the new year. I will also donate some of the money to Breast Cancer Now, who have been so amazing during my treatment.

Flattie with fish and chips

So there we go! The enormity of it all hasn't quite sunk in yet. But I'm looking forward to a relaxed Christmas up north and a very low-key new year. Bring on 2020 and all the regeneration it promises!

Ready for surgery

Tomorrow is my surgery date for my double mastectomy, so I thought I'd give you a summary of the build up and what I can expect. I saw my surgeon again a few weeks ago and we went through the final prep. It was quite funny actually because she had a student doctor with her and so was using me as a teaching tool. I've been naked in front of a gazillion people over the last three years and I don't have a shred of pride left, so I'm more than happy for someone to learn from my body and my experience. So I stripped off from the waist up and my surgeon asked the trainee 'so what can you tell about this lady before you've even examined her, just by looking?'. The poor girl didn't know where to look, and only glanced in my direction before offering a tentative, 'She has one breast bigger than the other?' My surgeon was not impressed. She pointed at my small radiotherapy tattoo, the one in the centre of my chest. 'What is this?' she asked the student doctor, who muttered that she didn't know. 'That's a radiotherapy tattoo. And if you look at the sides of her rib cage you will find two more. This tells you she's had radiotherapy. Can you tell where she has had radiotherapy? Can you see that her right breast is still red from the radiotherapy?' She then pointed at my scar from my first surgery, which the trainee had failed to notice (to be fair, it's pretty impressively neat and inconspicuous). 'And you can see from this that she's had breast surgery before. And if you look under her armpit you'll see the scar from where she's had lymph nodes removed. All of this you can see before you've even given her a physical examination.' The poor girl was by now red with embarrassment. Looks as though she has a lot to learn!

About a month ago, I had my follow-up appointment with the psychologist, to ensure I was cleared for surgery. We had a lovely chat and she sent a very detailed summary to my surgeon, saying 'I see no psychological reason why she would not be a good candidate for surgery'... and 'she explained that her breasts have not been a big part of her identity through life and mastectomy surgery would therefore not result in a significant change for her in terms of body image and identity'... and 'following my meeting with Carmel my impression is that she has made a considered and informed decision with regards to surgery and has the internal and external resources to help her adjust to this and associated body changes'. So there we are! I'm green lit to have my breasts removed and not have reconstruction.

I also had to have my bloods taken, and swabs of my mouth, nose and groin to check for MRSA.

At my pre-op prep appointment, the nurses gave me a bottle of Octenisan body wash, which is a hypoallergenic antiseptic wash, and instructed me to use it for a few days before and after surgery. This evening I washed my hair with it, as well as my body, and I have to wear clean pyjamas every day, and wash the bed sheets every day on a hot wash. I also have to brush and floss my teeth and use a new toothbrush every day for a few days. This is to reduce the chance of infection. I also had to remove my toenail polish and I am not allowed to use moisturiser or deoderant tomorrow. And I'm nil by mouth from midnight.

Last week we went on holiday to the Isle of Skye for a week, to visit my dear friend Jill who is over from Australia visiting her parents. Jill has been so supportive during my treatment and kept me amused during chemo with tales of her funny son, Billy. Well this week we got to spend a good amount of time hanging out with them both, and experiencing Billy's comedy first hand. It has been a magnificent, restful and restorative week and I'm feeling ready for tomorrow.

In the magic light on Skye

Today I had a few deliveries of things I'd ordered online, including a large U-shaped pregnancy pillow to help me sleep when my wounds are new, and a huge online food shop so that our cupboards are stocked up. I've also got two heart-shaped pillows from the volunteers at 'Jen's Friends' who sew these pillows which you hook over your shoulders and they prevent your arms from irritating your wounds. A few weeks ago we went to 'Cook' in Maida Vale, as my magnificent former colleagues in Australia had sent me some vouchers to spend. They make posh frozen meals basically, so our freezer is full of yummy 'homemade' food which should make the next few weeks easier. I have a rota of my friends here in London coming to make lunch for me for the next 2 weeks as Tanai needs to get back to work as soon as possible this week and I'm not allowed to lift anything for a few weeks. As this is my third surgery this year, he's pretty much used up his compassionate leave, (and some!). I'm so lucky to have such a fabulous, global network of friends helping support me through all of this.

So tomorrow I have to be at the hospital at 7am, and apparently I'm first on the list. Of course, I could always get bumped if there's an emergency, as mine is elective surgery, but hopefully it will all go smoothly as planned. I'll be in overnight and then home and glued to my sofa for a few weeks. I'm just packing my bags now and then I'll try to get an early night. We were hoping to get our Christmas tree up today but they didn't have any stands in the shop, so we'll have to do it at the weekend. This means Tanai will bear the brunt of the decorating responsibilities (and I'll have to direct them from the sofa).

I shall keep you posted on instagram as to my progress!

Mastectomy planning

This Tuesday I saw my breast surgeon, Miss L______, and now that I've finished with chemo, it's all systems go as we plan for my preventative breast surgery. To recap, back in 2017 when I was having treatment for breast cancer, I didn't know that I carried the BRCA1 gene mutation, so I just had a lumpectomy and a couple of lymph nodes removed for testing. My pre-surgery chemo had shrunk the tumour to a tiny size, so the surgery scars are barely visible now, and the lymph nodes they removed were all clear, so it hadn't spread anywhere beyond the breast.

However, when I found out last year that I was BRCA-positive, I knew that I wanted a preventative double mastectomy, as this reduces my risk of another breast cancer from 80% to 2%. For me, this was a very easy decision. Regular readers will know that I decided to have my ovaries removed first, and I'm so glad I did! They found a tiny bit of ovarian cancer, so I was able to have more treatment to ensure that's all removed and nuked.

I know it seems as though my treatment is never-ending, but with a little bit of luck, this should be the last of it. And I'm not going to waste any time! I'm having my surgery on Tuesday 3 December. We discussed a whole bunch of stuff in my appointment on Tuesday and I signed my surgery consent forms. And now I have a whole heap of things to get done before the big day. This afternoon I had a full body CT scan, (where I had to get injected with a contrast dye that made me feel as though I was peeing) and I get the results of the gynae sections on 9 October. Then on 1 and 7 October I have an MRI, a mammogram and an ultrasound examination. If all the tests are clear they'll go ahead with the removal of the breast tissue, skin and nipples on 3 December. I have decided I don't want reconstruction so she is going to make sure the two scars are as neat as possible and I will live the rest of my life as a flattie. Apparently it's likely that the scar on the right breast will not be as neat, because I've had radiotherapy on that breast back in 2017. I will stay in hospital overnight and have drains inserted to drain the fluid from my body. And all being well I can return home the following day. I'll be injecting myself with more blood thinning medication after the op, and I need to watch out for infections. I will probably get a seroma under each armpit which is where the fluid gathers. I will have to either let these be absorbed back into the body naturally, or you can have them drained. I had one after my last op which was drained in the hospital so it's not too much of an issue.

Consent form

So, as my platelets were only 75 the last time I had my bloods done back in August, I had to get my bloods done again today, and I will need MRSA swabs done at my pre-op assessment on 12 November. I also need to have one final session with the hospital psychologist, to 'green light' me for having surgery without reconstruction. (Yes, this is the ridiculous situation whereby reconstruction is seen as 'normal' so they don't worry about you then, but choosing to go flat requires a psychological assessment.)

I'm really pleased the surgery is so soon, for a number of reasons. Since finding the ovarian cancer earlier this year, I have understandably been much more anxious about another breast cancer growing in my breasts since I finished treatment. I feel as though my breasts are just ticking timebombs on the front of my body, so I'm really keen to get rid of them. I have a bunch of stuff going on in November: I'm speaking at a conference in Birmingham about 'reimagining leadership', I'm visiting my grandma in York for her 90th birthday, and Tanai and I are heading up to the Isle of Skye for a holiday. I didn't go on any holidays this summer because I was recovering from surgery and going through chemo, so I'm really glad we will still get to go on holiday. And I will also get to see a dear friend of mine, Jill, who lives in Australia who I haven't seen for ages, as she is visiting her parents on Skye while we are there. Jill kept my spirits up during my treatment in 2017 by texting me the hilarious things her son Billy said. There's nothing better when you're feeling like shit from chemo being inspired to have a real belly laugh because of something a little boy said on the other side of the world. So we will get back from Scotland on 1 December and then I'm heading into theatre on 3 Dec. Great timing. Also I will get to spend December recovering at home, because I finish up at my current job on 18 October, and I'm planning to start my own business in the new year. By January I should be ready to put all of my energy into that, which is very exciting.

They will send everything they remove from my chest to a lab for testing, and a couple of weeks after surgery I will see my surgeon again for my pathology results. If they are all clear, it will be a huge milestone. That will mark the end of three years worth of cancer treatment, and the beginning of the rest of my life. If they find something in the tissue, I will likely need further surgery to remove lymph nodes and more chemo. I'm trying not to worry too much about these results, but you can guess what's at the top of my Christmas list, can't you?

So it's all systems go. I'm really pleased to have the date, because I can start to plan the next few months in earnest.

General update

My last round of chemo, the fourth round, was on Thursday 1 August, and it coincided with my third Zometa infusion, which I have every 6 months to protect my bones. Unfortunately it seems that the side effects compounded each other and I had 5 days of feel wretched and incredibly nauseous. For most of the weekend afterwards I couldn't really make it out of bed, the fatigue was immense. It really knocked me back. For this reason, and because I've had so many delays this time, I was dreading chemo 5 this week. First of all, I could tell that my bloods wouldn't be good enough, so I'd be pushed back another week. And I was dreading how I'd feel, and how long the side effects were going to last. Chemo is cumulative, after all, so it stands to reason that you feel worse each round.

So on Thursday I went to my regular pre-chemo oncology appointment, but this time I was prepared for a tough conversation. When Dr M____ asked me how I was, I explained that, while I'm certainly feeling much better physically than I did when going through chemo in 2017, I've been struggling with the impact it's having on my life, and therefore my mental health is taking a battering. I have tried to avoid putting my life on hold this time, but when my chemo keeps getting delayed, it's incredibly hard to plan things. We had a good conversation about it, and we have decided to stop chemo altogether. I was so relieved I got a bit teary! There is no evidence that suggests that 6 rounds would be more effective than 4, and the cancer I had was so tiny that it's highly unlikely there are any rogue cells remaining. And if there are, 2 more rounds are not going to do anything to them if the 4 I've had already haven't nuked them! Let's face it, this chemo was elective, and my first dose was double that of the subsequent doses. As it turns out, my bloods weren't good enough anyway (platelets were only 75), so I'd have been delayed, as I predicted. But I'm so pleased we've made this decision and I don't have to go through carboplatin again.

I now have to have a CT scan (standard after a course of chemo) and I will see the oncologist again in 6 weeks' time. Then I will have a check-up every 3 months, with a CA-125 blood test (for signs of ovarian cancer) for 2 years, after which it will become every 6 months, and then every year, until I hit the magic 5-year mark.

So now I have to concentrate on getting myself stronger and fitter in preparation for my mastectomy. I have a mammogram and an MRI in October, and then I should be seeing my breast surgeon some time in November to get the results and to plan for surgery. I'm hoping that can be sometime soon in the new year. There's still quite a lot ahead but I feel as though I've passed another milestone in my treatment.

Celebrating another milestone with St John's donuts

In other news, I've been accepted as a volunteer counsellor for Breast Cancer Care, as part of their Someone Like Me programme. This is where women who are newly diagnosed can be paired with someone who has been in a similar situation, and have a series of phone calls. Before I can do this, I have to go through a training programme, and then I am mentored for my first few calls, before I'm a fully fledged counsellor. It's a voluntary position for a minimum of 3 years. I'm really looking forward to doing this. It's so important for me to 'give back' in a meaningful way, and help others going through what I've gone through.

I've also recently been seeing a new counsellor myself, through my GP, and I'm having a much better experience this time than I did with the psychotherapy team at Bart's. I see her every Thursday morning for an hour, and we've talked about so much. She has really helped me to think about things in a different way, and pursue lines of enquiry that I'm finding really helpful. I have 4 more sessions left, so hopefully that will feel like enough.

For those of you who don't follow me on instagram, I've also finished my post-treatment craft project: a baby blanket for a good friend who gave birth to a little girl a month ago. I crocheted when I was confined to my couch after both my surgeries, during chemo, and as I've been recovering each round at home. I'm so proud of the result!

The finished blanket!

Cancer survivorship course and lymphedema clinic

It's been a week since my second round of chemo and I'm doing well, despite not taking my steroids this time. As with last time, the first couple of days were fine, I felt well and had loads of energy. Then days 3-5 (Saturday to Monday) I felt pretty rubbish, the nausea kicked in and the fatigue hit me. Unfortunately, as I hadn't planned on this week being a chemo week (but my treatment was delayed) I had made quite a few plans. Lunches, coffees and dinners with friends and visitors from overseas. I soldiered on through them all, and then crashed on Sunday, exhausted. I tried to make it into work on Monday but the nausea was overwhelming, so as soon as I arrived I had to turn around again and come home. But by Tuesday morning I felt fine again and I have been doing okay since then, cycling into work, or walking home, trying to ensure my resting heart rate doesn't creep back up too much.

My hair is doing really well too. I'm loving my new hair style. A few strands of hair come out each time I wash my hair, but nowhere near as bad as the clumps that were falling out when I had chemo in 2017. I'm restricting myself to only washing my hair twice a week to minimise hair loss, so hopefully I'll get to the end of chemo with just a bit of thinning. I did keep all of my headscarves from last time I had chemo, but it's nice not to have to use them again. Although I have been wearing some of them as regular scarves, as they're so beautiful!

New earrings!

On Monday evening I started an online course on 'Cancer Survivorship' which I think is going to be interesting. It's from 7-9pm on Monday evenings and we all join each other from all over the country via Zoom, an online meeting software. It's for people of any gender, age and cancer type, and includes participants with primary and secondary cancer. It has four main components, focussing on our psychological, physiological, immunological and emotional health. It's run by a passionate, knowledgeable and enthusiastic guy called Sam and he has run this within the NHS before, and many times online. It's evidence-based, but also rooted in positive psychology and influenced by ayurvedic medicine. He cites some incredible case studies to back up his advice, and over the next few weeks we will gain lots of knowledge and techniques, which I'm looking forward to. The intro session laid the foundations, focussing a lot on positive psychology, and how we can use our minds to determine some incredible physical outcomes. I think it will be really useful, I'll keep you posted.

Joining the class

This week I also had my appointment at the lymphedema clinic, where I saw a nurse who gave me some advice about the swelling I now have around my pelvis and abdomen following the removal of my pelvic lymph nodes. She has taught me some 'MLD', or manual lymphatic drainage, which is basically where you perform massage on various parts of your body to encourage the lymph to drain and reduce swelling. She also gave me some kinesiology tape, and showed me how to stick it from my back around to my stomach, so that it massages my lymph around my body while I'm walking along. She has also ordered me some compression tights which should help, and she told me to buy some cheap spanx-type shorts to create more compression around that area. LOL. I also have to get a gel cover for my bike saddle to protect my lady parts from problems caused by my surgery. She said that you can pay to have manual lymphatic drainage done privately by experts, but that it's better to try to get someone to teach me techniques so that I can ensure I'm doing this frequently and getting maximum benefit. 

Tanai heads off to Colombia for 3 weeks on Wednesday, so I'll be home solo for a while. I've got a few little bits and bobs planned but I'm hoping to have a relaxed summer and continue to recover from my surgery and build my strength.

Chemo delays

I was supposed to have my second round of chemo last week but it was delayed and I ended up having it yesterday instead. I went to see the oncologist last Wednesday as usual and all seemed fine. I reported my side effects from the first round to him, and then we discussed various things. Firstly, I asked if I could skip the steroids this time. I'm convinced that the majority of my side effects are from the steroids rather than the chemo, and they just make me feel like crap. He said their only use was anti-sickness, and I have plenty of domperidone which are my regular anti-sickness, so I should be fine to skip them. He prescribed them for me just in case, so I can take them if I feel I need to. Then I asked if I can have the GCSF injections, which are the ones I took last time I had chemo to boost my neutrophils. He said to wait until next time, which kind of pissed me off as I feel that now is the time to start taking those, and aren't they cheaper for the NHS than a trip to A&E? But sometimes you just have to accept no for an answer. Next up I mentioned that my pelvis is still quite swollen post-op and I'm a bit worried about it. He examined me and said it's just a regular oedema and it should go away, but to keep an eye on it. I might go and get a second opinion. Finally he informed me that the results of my kidney function tests were in, and the good news is that my dose of carboplatin chemo, which was 790mg for the first round, will only be 450mg from now on! This is great news, as it's almost half of what I had before, so should mean I get reduced side effects.

So I trooped up to the 7th floor the next day feeling chipper. I'd made a picnic lunch of gimbab (Korean sushi) for me and Becky, who had taken the day off work to come with me. Unfortunately when the nurses called me in, they said that my platelet counts were too low. They need to be at least 100 but they were only 62. They took some more blood and sent me home, saying they'd call me in about 3 hours and if my bloods were good, I'd have chemo that day, but if not we would have to delay. So Becky and I went back to my flat (I'm so glad I live so close by!) and made some of her famous granola (it is incredibly delicious, hit me up for the recipe if you like). And ate lunch and sat and chilled. Eventually I got a call from the nurse saying my platelets were no better, and actually my neutrophils had dropped to 0.9, which is in the danger zone, so I needed to come back to the hospital to pick up some GCSF injections (vindicated! I was right in the first place, Mr. Oncologist!). They wanted to push chemo back to Monday, but I insisted that they push it back a whole week, to the following Thursday, so that it didn't disrupt my life too much. I know that treatment is important, but I'm also trying to get on with my life, and I didn't want the entire working week to be written off. Becky was incredibly gracious about it, and said she enjoyed hanging out and the day off work was not wasted (thanks love!). And I tried very hard not to get upset about the delay. This will push my entire schedule back a week, so I won't have my final chemo until September now. Fingers crossed there will be no more delays.

 Becky's amazing granola

I googled how to increase platelet counts, and got lots of advice about eating papaya, pomegranate and pumpkin, as well as brocolli and leafy greens. I've enjoyed quite a few pomegranate smoothies in the intervening week.

Wonderful medicinal papaya

Medicinal fruits

So yesterday my friend Rima came with me to Bart's, and my platelets were a stonking 173! Happy times. How amusing to be so jubilant about receiving chemo! We had a very chatty Portugese nurse and we wiled away the time with great chats ourselves. It's such a fab opportunity to catch up with friends, if a little strange for them to come into that environment. I'm so used to it now, Bart's is like my second home, but I suppose it's all a bit alien to someone who isn't in 'the system'. We came home in time for lunch and then Rima went off to do some work and I napped for a couple of hours. Then we went out to see a talk at the Roundhouse, and I managed really well. I'm feeling pretty good today, the nausea is low and my energy is good, but the side effects didn't really kick in until the weekend last time so I'm bracing myself. I made quite a few plans for today and tomorrow, thinking it would be one of my 'good' weeks, so fingers crossed I'm okay.

Administering my GCSF injection

My ever-expanding diagnosis list in medical lingo

Tanai has been away this week in Canada at a conference, but he arrives home tomorrow. It's great that I have so many fabulous friends who can help me out in the meantime, but also to give him a break. My next chemo appointment is Thursday 4 July, so with luck, there will be no dramas in the meantime.

Breast surgery postponed

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!

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).

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.

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!

At home recovering

Reading over my last post, I sounded a little down, which I think is understandable given that I was in so much pain, feeling incredibly sleep-deprived, and completely immobile. Now that I am home and slowly regaining my strength, my spirits are also rising. It's so great to be back in my own bed, although I'm having broken sleep, and I'm still not able to really do much more than occasionally move from the couch to the bathroom and back. I'm slowly regaining my appetite, and the doctor has recommended I eat a protein-rich diet to help my wound heal, so I'm trying to make sure I eat lots of protein. I have a craft project on the go, as I'm still not really ready to focus on reading a book just yet, and I'm listening to the fifth Tales of the City book on audible. Tanai is working from home this week and basically doing everything around the house, as I'm not allowed to lift anything and can't even bend over to pick something up off the floor. He's being a total legend.

Eating lunch at home

I want to take a moment to acknowledge how incredible our NHS is. For those of you not UK-based, this is the National Health Service, a 70-year-old institution funded by our taxes, which provides universal healthcare free at the point of delivery for all people residing in the UK. I received all my treatment for breast cancer through the NHS and now I'm having my ovarian cancer treatment with them too. I haven't paid a penny and won't need to pay anything, which I know differs markedly from the healthcare provisions in other countries. Having cancer is stressful enough without having to worry about getting into massive debt to pay for healthcare! Yes, their systems and processes need updating (it's very paper-based) and they are being run into the ground due to chronic underfunding by the Tory government and a major shortage of nurses due to Brexit, but it's still (just about) creaking on, and I am so incredibly grateful. They are saving my life for a second time.

I stayed in hospital for 6 days after my surgery. Each day the NHS worked like clockwork around me and the other patients on my ward. I had my temperature and blood pressure checked hourly in the first few days, and every 3 hours once I had stabilised. The doctors did their rounds in the morning, assessed me, and revised their judgements about when I should go home. My bed linen was changed every morning and I had a little wash and donned a fresh gown. All my meals were provided, as well as regular coffees, teas, hot chocolates. The food is a bit like school dinners, and consisted mainly of overcooked, bland vegetables with questionable meat, but it was nutritious, and also free. The nurses work in 12-hour shifts, a day team and a night team, so there is round the clock care. I had a buzzer on my bed which I could press at any time, and a nurse would come and attend me, so when I was feeling incredible pain at 3am, someone came and brought me liquid morphine to ease the pain. My wound dressings were removed by two student nurses under the supervision of the ward nurse, which they did very well, and they thanked me for allowing them to get experience doing this as it all counts towards their nursing qualifications. And when I was discharged, I was given a massive bag of meds: 3 different types of pain relief to last me 7 days, the rest of the course of antibiotics they have put me on, some tablets to prevent stomach ulcers due to the pain relief, anti-sickness tablets, and 28 little injections that I have to inject myself in my belly for a month to prevent blood clots (due to being immobile). Once again, no payment exchanged hands for these. 

They do so many thankless tasks, changing my bag of pee when I had a catheter, turning and lifting people who are immobile, dealing with people who are cranky and distressed, and in one instance, racist (the lady next to me was on the phone complaining to her husband about how 'all the nurses were blacks'!), and they are paid in some instances less than the London Living Wage. It makes me so angry that we live in a culture which values care work and other vital professions, such as teaching, on such a low level, and yet values other types of work (eg banking, politics) so highly. Our society relies on people in the caring professions to have some kind of 'vocation', and to do the job because they love it, not for the money. This is fine, I've never been particularly motivated by money, but you need to pay people a decent living wage. One of my chemo nurses quipped that she would be better off getting a job in retail as it pays more and is less stressful than nursing! And this is being borne out by the numbers of people leaving the profession, and the reduction in people applying to train. Last year there was a shortage of 70,000 nurses applying for job in the NHS. Brexit has a lot to do with this, as Europeans are uncertain of their rights to work here, but also other non-Brits are feeling less and less welcome in the UK. I would say, over the two years of being treated for cancer, around 10% of the people caring for me have been British. The NHS would fall apart without migrant workers, and that is exactly what it is doing. I am witnessing it crumbling from the inside. The nurses and doctors are all so overworked, you can feel the strain on them of being short staffed. They are all having to cover each other's duties and it's taking its toll. It's incredibly tragic to see, but with the continuing conservative governments and their ongoing privatisation of NHS services, I don't see how this trend can be reversed. I feel lucky to be getting my treatment in the twilight years of the NHS, and hope that I can once again be cancer-free before it totally falls apart.

I'm going to post a photo of my scar at the bottom of this post, so don't scroll down if you're squeamish, as it's quite a Frankenstein-esque scar! I have 42 industrial-sized staples in there, which I need to get removed at my GP on Friday. Then next Wednesday I go back to clinic to see my surgeon and find out the pathology of all the elements they have removed, and get the next steps. Until then, it's a glacial recovery, slowly getting stronger and more mobile each day.

 What a scar!

Recovering from surgery

I drafted a post last week about how I was recovering from my oophorectomy, but didn’t get chance to publish it before I headed back in for my second surgery. The two experiences are markedly different. I guess all of that is irrelevant now, as this more major surgery has taken over. I thought I'd give a summary so you know how I'm getting on. I won't sugar-coat it, it's tough. This is the most major operation I've ever had in my life, and I've got to admit I'm struggling. But each day I'm getting a little stronger, so I just need to be patient and take it day by day.

In Recovery

Jugular cannula!

The surgery went well, the surgeon had a look around and didn't seem to find anything untoward, and I only lost 220ml of blood, so didn't need to have a transfusion, or go onto the High Dependency Unit, which is good! I was in the recovery bay until 2.30am on Wednesday morning though, as my blood pressure was really low, and they wanted it to come up before I went on the ward. I've been on the ward since then. So they removed my uterus, cervix, all my abdominal and chest lymph nodes and my omentum, which is part of the peritineum, and to do this they had to open me up from just below my breasts to my lower abdomen. I'm going to have an epic scar! It took them almost 6 hours. I also woke up with way more tubes than I was expecting.

- They put a cannula in the jugular vein in my neck, and then stitched it to me! This was an emergency line in during the op which I don't think they used in the end. When they removed the tube from it, it was about 6 inches long. Eurgh.

- They also put a cannula in an artery in my left hand.

- They also put a cannula in a regular vein in my left hand, which is still being used to give me pain relief

- They also put a cannula in a regular vein in my neck, which is still being used for pain relief and anti-nausea. They used my neck because I can't have sharps in my right arm due to having lymph nodes removed a couple of years ago during my breast cancer op

- They also gave me an epidural in my back, for pain relief during the surgery and for the first couple of days afterwards. I assumed I would never have an epidural because I thought they were just for childbirth! It was pretty cool, and when they removed it yesterday the nurse showed me the blue hooked tip which is used to deliver the anaesthetic

- They also had a feeding tube hooked into me via my nose all the way into my stomach

- They also had an oxygen tube hooked into my nose and round my ears, delivering me pure oxygen

- I also had a catheter as I couldn't walk so needed to be able to pee

Now, two days later, I just have the two regular cannulas and my oxygen tube, so there are slightly fewer wires to worry about!

I'm in a room for 4 people, and unfortunately the woman in the bed opposite me is the world's loudest snorer! She's been at it like a generator and seems to have an incredible capacity to fall asleep at all hours. I have earplugs and I can still hear her grating snore through them, it's so loud! Also, they have to do observations on me hourly, checking my blood pressure and temperature, so I'm not getting much rest. My pain relief has been switched to a PCA, which is controlled by me, so I press it every time I require pain relief. This is all very well, but it's forcing me to choose between sleep and pain relief! I'm still not allowed to have solid food, but I've graduated to soups and yoghurts, which means I can now also have ibuprofen in my mix of pain meds.

On the first day they insisted that I stood up and got out of the bed and into a chair. I felt very dizzy and only did it for a few minutes, but it felt like a great achievement. Last night I had a burst of energy and did it again, and managed to stand for about a minute. Today I've been able to walk to the bathroom twice, although very gingerly.

I'm significantly more incapacitated this time round, although I was lucky enough to have some friends bring me yummy food after the last op, so hopefully that will continue to happen after this one! Once again everything they removed will be sent off to the lab, and we will get the pathology reports in about a fortnight, and then we will crack on with the rest of treatment. I'm keen for it all to start, as the sooner it starts the sooner it will finish. I've also donated my tissue to a tissue bank -- so once the lab is done with it, instead of being incinerated, it will be sent to the tissue bank, for both local and international studies. Another opportunity to help medical science and improve cancer care for patients in the future!

I suppose that was a slightly pedestrian, descriptive post, but I felt the need to document it. I'm confident I shall get stronger every day and continue to fight back.

Ding Dong: Round Two

So I have had some pretty shitty news. As you know, a few weeks ago I went into hospital for a preventative oophorectomy, to remove my ovaries and fallopian tubes in order to prevent me from getting ovarian cancer to which I am genetically pre-disposed. After removing them, they sent them off to the lab, and unfortunately ovarian cancer had already started to grow. So now I'm facing another few months of treatment to tackle this second cancer diagnosis, just as I was starting to feel strong again after beating breast cancer.

It will all start on Tuesday (yes, they're moving fast!) with some more surgery. This time it's a significantly more major procedure. They will open me up properly from navel to chest and remove a whole bunch of my insides: my uterus, cervix, all my lymph nodes and my omentum, which is part of the peritoneum, which is the layer of tissue which keeps all my organs in place (hopefully they won't move around too much after it's gone!). Also, while the surgeon is in there, he'll take a look around, and if he sees anything dodgy he'll take that too. The operation will take about 5 and a half hours, then I'll be in the HDU (High Dependency Unit) for a couple of days, and then on the ward for about a week before they'll let me go home. They'll send everything they remove to the lab again, and then we will know 100% what we're dealing with.

And then three weeks later I will have to start chemotherapy again. This time 6 rounds of chemo, every 3 weeks as before, which should take me up to September sometime. The drugs for ovarian cancer are different from the ones I had for breast cancer. I will be having carboplatin and paclitaxel. So the side effects may be slightly different, but the basics are the same (fatigue, hair loss, damage to nails and skin, compromised immune system etc).

Needless to say, I'm gutted, and Tanai and I have been quite upset these last few days. It just seems so frustrating that when I'm finally feeling strong and we are starting once more to talk about the future and get excited about things, that I get kicked down once again by cancer. But, in my usual approach to these things, I am determined to fight it and do my best to get through it once again. I'm seeing it as a bump in the road rather than a complete disaster. Plus, I'm going into it with my eyes open this time, having been through treatment once before. This will have its differences, but I know I can get through it. And I will actually use my learnings from last time to tackle it slightly differently this time.

I will try to exercise much more through chemo, if I can handle it with the fatigue. Last time I had chemo I put on 10 kilos (a stone and a half) and it's taken me a year and a half to almost get rid of it all! Now that I'm in medically-induced menopause and on Tamoxifen, combined with my residual cancer-related fatigue,  it's much harder to lose weight, so I'm going to try to avoid putting too much on during treatment. I will do little lunchtime walks to Primrose Hill and gentle exercises at home, once I'm healed from surgery. I will also ensure I eat a healthy, nutrient-rich diet. I do this anyway, but I will be conscious of it much more, and won't be as indulgent as I was last time during chemo. Also my hair has just started to get to a length where it's feeling like a hair style again! So I'm going to attempt to keep my hair. I will only wash it once a week and tie it up with headbands, and hope that it only thins, rather than comes out completely. This may be a pipe dream but I shall try! At least I have kept all my headscarves from last time if it does end up coming out.

The good news is that a CT scan I had on Tuesday shows that it's unlikely to have spread. I have a high grade cancer, which means it's fast growing and aggressive (as was my breast cancer) but it feels as though I've caught it early and I have every chance of beating it. I will have to postpone my preventative mastectomy, and hopefully that won't cause me similar problems, but I'm still planning on having that done as soon as possible.

As with last time, my employer is being very supportive and, once I'm recovered from surgery, I'm planning to work throughout treatment. However, I'm due to run out of paid sick leave soon, so one of my biggest worries about all of this is about finances. So I've decided to put myself out for small freelance jobs -- proofreading, copywriting, baking, strategic planning -- basically anything I can put my mind to in my spare time. Hopefully I can ensure we can make ends meet.

The other change this time is that I will be more willing to ask for help. Tanai and I shouldered the majority of the burden ourselves last time, and we are both still exhausted from that. Tanai especially as I couldn't do as much. So this time we will be putting the word out and asking for help. I'll put a post up in a couple of weeks with more specific requests for support and for paid work for me, but in the meantime any offers of healthy home-cooked food are very welcome. I have not had time to fill my freezer with batch-cooked meals and I want to eat as healthily as possible. Tanai is a great cook and I know he can cook for us both, but it's a nice way to ease the burden and help us out financially at the same time.

Anyway, that's enough info for now. First things first: I need to get through Tuesday's surgery and recover from that. Then once I'm home I'll do a bit more logistical planning and will post again with more info.

It sucks, but I'm feeling hopeful and as strong as I can be in the circumstances. And so very glad that I pushed and pushed to have the BRCA test after my oncologist said 'no' three times, and then once I had a positive result, to immediately get the ball rolling to have my ovaries removed. I have given myself the best possible fighting chance. Now our NHS have to do the rest.

Ready for my oophorectomy

I'm sitting on the sofa with a hot chocolate and a shortbread biscuit: the last things I'll eat before fasting for my surgery tomorrow. I'm as ready as I'll ever be. Really hoping it all goes smoothly. I've had a lovely few weeks of birthday celebrations, as I turned 40 on Saturday, so it's really been a lovely build-up to the op!

Bye bye ovaries! Not to scale.

So as a reminder, I'm having my ovaries and fallopian tubes removed tomorrow. I had my pre-op assessments on Wednesday last week. I had to go to the Royal London Hospital in Whitechapel, where my surgery will be tomorrow, and have various tests. I had swabs taken of my mouth and nose (so they could test for MRSA), they checked my weight and height, and asked me loads of questions, including some really strange ones, like did I have any bruises. The nurse was really laid back, almost worryingly so. It's a bit strange being in a different hospital and realising that each has its own culture and feel about it, and the Royal London feels so different from St Bart's. I haven't met my actual surgeon yet, I'll do that tomorrow, but I was then sent to another room where another doctor asked me a whole load of questions (including lots that the nurse had asked me). I'm really not sure why I had to answer all these questions twice, but hey ho. 

The nurse gave me 4 pre-op drinks -- basically carbohydrates and electrolytes. I've had 2 this evening and then I have to have the other 2 in the morning before I stop drinking water altogether. She also explained that after the operation I will have to inject myself every day for 28 days with something to prevent my blood from clotting. Urgh, not looking forward to that! I think I'll spare Tanai the pain of having to do it, and learn to do it myself. She said it was supposed to be Tinzaparin, an anti-coagulant which prevents DVT, but due to the impending Brexit there is a shortage across the NHS of this (and many other) drugs, so I have to have a substitute. Another reason to be angry about Brexit! I wonder how many people's health is jeopardised because of this.

 

I had to have 7 vials of blood taken (seven!) and the nurse was so useless. She tried twice to find a vein, and for some reason I got a really bad vibe about her. I just knew she wasn't going to find one, and I felt quite distressed. Over the course of my whole treatment, I have had countless needles stuck into my arms, by many many people, and I have started to see when people are good at it and when they're not. And she wasn't! (Also, she inserted the same needle twice which has never happened before, which gave me great misgivings.) Of course it's made harder now because I'm only allowed to have needles in my left arm, thus halving the number of veins they could attempt to use, and my veins are still rubbish from chemo, but I knew she wasn't very good at it. I asserted myself and asked her to give me my stickers and that I would go and get my bloods done at St Bart's. I did head into Bart's on Friday to get my final Zoladex injection and the lovely woman in the phlebotomy clinic found a vein first time and took the seven vials of blood in no time at all! So I'm really pleased that I didn't just sit there and let the nurse jab at me incessantly with a needle.

So this evening I've packed an overnight bag, removed my toenail varnish as instructed and I'm going to try to get as good a night of sleep as I can. Tanai will be coming with me to the hospital tomorrow and he's working from home for a week so he can look after me for the first week. I'm not allowed to lift anything for 6-8 weeks so any offers of visitors (especially those bearing home cooked food!) are welcome.

Today is also exactly 2 years to the day that I received the life-changing news that I had cancer. It feels like a lifetime ago. I can't quite believe how much has happened since then!