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!

Discharged from oncology; prepping for surgery

Today was a bittersweet day. I was officially discharged from my oncology team and I've moved into the 'Open Access Follow Up' programme. This means that I have no more oncology appointments scheduled: I will just have annual MRIs and mammograms, and I have a hotline number to call if I suspect anything is wrong, and I will be seen immediately. They have done studies and found this is a much more effective follow-up system than annual appointments. So effectively this marks the end of my treatment and I'm free to go into the big wide world as a cancer-free person!

Discharged! In the Bart's quad

However, it's not quite that simple. For one thing, I still have plenty of medical appointments in the diary. There's my monthly Zoladex injection to suppress my ovaries. There's the Zometa every 6 months to help my bones. I'm still visiting the menopause clinic every 4 months to check up on how I'm going with that. And I'm still seeing the lymphodema clinic about my swollen right arm and hand.

But the biggest hurdles I have in front of me will be two lots of surgery next year, and preparation for these has progressed quite a bit over the last few weeks. As I carry the BRCA1 gene mutation (I explained more about this here) I am going to have an oophorectomy on Thursday 28 February, at the Royal London Hospital, where a team of surgeons will remove my ovaries and fallopian tubes. I have had some pre-op scans (apparently my ovaries are looking very fine and healthy, woop woop!) and some other tests. I have also been seeing a biokineticist to prepare me for the operation and ensure I am as strong as possible going into it, to enable me to have the best possible chance of a good and speedy recovery. I am doing a series of exercises every day to help strengthen my core and my back.

And on Thursday 19 September I will have a double mastectomy, removing both my breasts completely, as a preventative measure, because my chances of getting another breast cancer with this genetic mutation are 80%. This will be at St Bart's. I met my surgeon, Miss L____, on Tuesday this week (the same surgeon who originally told me I had breast cancer, and who carried out my lumpectomy in October last year), and we discussed a few things and set the date. She is as humourless as ever, and despite me indicating that I did not want reconstruction, proceeded to talk me through my reconstruction options. There is an assumption in the medical world that women, especially young women like me, will want their breasts reconstructed, and it's really hard to convince them that this is not necessarily the case. She even used the expression 'to make you look like normal'. As you can imagine, I had to bite my tongue! So I let her talk me through the options, and all the potential problems that can occur with each one. Firstly there is the silicone implant option, and she let Tanai and I hold a teardrop silicone implant to feel how 'realistic' it felt. As soon as I touched it I knew that I didn't want something like that inside my body. And then when she outlined the potential complications (it can rotate and look weird, it can cause cancer, it can rupture, it can infect the tissue around it, it requires regular maintenance including follow-up surgery etc) I knew even more firmly.

Next she made me take my clothes off and squidged my belly, before declaring that I didn't have enough belly fat for her to fashion two breasts 'at my current bra size'. I took that as a compliment, I have been losing my chemo weight quite efficiently! So then she looked at my back muscles, and explained how they could preserve the skin from my breasts, and then refashion breasts from belly fat or back muscle, and give me new breasts with the old skin and nipples. Again, I shuddered at the thought of this hugely invasive surgery, with its prolonged recovery time, and the potential complications including severely restricted mobility in my arms and shoulders (no more yoga, cycling, swimming!). After hearing all my options, I said again that I'd like to remain flat, and that I've even joined a facebook group called 'Flat Friends' where there are all sorts of amazing women who have had single or double mastectomies and have chosen to remain flat, and I am receiving lots of advice and support from them.

So in order to proceed I have to jump through a few more hoops. I have to discuss my options once again with the Breast Care Nurse team. They have to refer me to a psychologist and only after they have cleared me will they agree to carry out the surgery without reconstruction. What a rigmarole! But I will proceed and when I see the surgeon again in May I will be more emphatic about my decision. We have chosen September as my surgery date because my dissertation is due in August so I thought I'd get that out of the way before having my op.

I will have to take a few weeks off work after each operation, to recover, and I'm going to make sure that I properly recover this time, instead of going back to work too early and making myself ill, like I did after my first breast surgery. All offers of home cooked food and visitors while I'm convalescing are very welcome.

Just before I left the appointment I shook Miss L___'s hand and apologised to her that I was going to ruin her handiwork. She did such a fantastic job of my first surgery and the scar is so neat, but now we're going to be getting rid of it all! I think I did finally raise a glimmer of a smile; she may have even laughed a little. I call that a win!

But with all this ahead of me, you can see why I wasn't so jubilant today at receiving my discharge notice. This year has been a wonderful year of recuperation, rest, holidays, recovery and building up my physical and mental strength. 2019 is going to be another challenging year of treatment, plus the intensity of finishing my masters, but I'm feeling very positive about my surgery decisions, and I'm looking forward to being done with it all, and able to just get on with my life. And to develop a new style once I'm a flattie!

Genetics

Another significant update from me. Some of you may remember that I hassled my oncology team to refer me for a genetics test last year while I was going through chemo. A small percentage of breast cancer cases are caused by a genetic mutation, called BRCA1 or BRCA2 (which stands for 'BReast CAncer'). This mutation also causes ovarian cancer and my dad's sister, Trish, died of ovarian cancer in her late-40s which planted the seed of suspicion in my mind when I first heard about these genes. My oncologist refused to refer me, as I didn't quite meet the NICE (National Institute for Clinical Excellence) guidelines for referral. This is because my cancer was triple positive, and genetic cancers are more likely to be triple negative. Also I only had one relative who had a breast or ovarian cancer diagnosis, and NICE wants you to have 2 or more. But then I heard from a woman in one of my support groups that the Royal Marsden hospital routinely BRCA tests everyone who is diagnosed with breast cancer when they are under 40 years old. (This is because the younger you are, the more likely it is that genetics have caused your cancer diagnosis rather than 'lifestyle factors', as you haven't been alive for as long!) So I pushed more firmly when I had a registrar see me instead of my regular oncologist, and I got my referral. It took ages, but in January I had my blood test done and in May I found out that I carry the BRCA1 gene mutation.

I've been keeping it quiet for a while because it was such significant information, I wanted to process it, and decide what my next steps are. I was tested at the genetics department at the Great Ormond Street Hospital, and as part of the testing they provide you with genetic counselling, to help you make informed decisions and understand the implications of carrying the mutation. I have also read a lot of research so that I feel I have all the information to hand.

Firstly, I've decided to have an oophorectomy. This is surgery to remove the ovaries and fallopian tubes, to prevent ovarian cancer. With the gene mutation, I have a 40-60% chance of getting ovarian cancer. Ovarian cancer is very hard to detect, and there is no screening available, so the only way of reducing this risk is to have them removed. I don't want children, so there is not that consideration for me, so I've proceeded with initiating this surgery. I saw the gynae-oncologist last month, and I'm seeing her again in November, but I'm on the list to have this as soon as they find me a slot. It's elective surgery, so there's a bit of a waiting list, but it could be sometime in the new year. I will post more here once I have some more information.

Next up, I've decided to have a double mastectomy. This is surgery to remove both my breasts entirely. Because I carry the BRCA1 mutation, I have a 70-90% chance of getting a new primary diagnosis of breast cancer. This is not a recurrence of my recent cancer (my recurrence chance is quite low due to the preventative measures I took and the drugs I'm on now), but a new initial diagnosis. As a BRCA1 gene carrier, the NHS will screen me by giving me an MRI every year until I am 50, then a mammogram every year after that, but the screening only detects a cancer once it has started to grow, which means I would have to go through treatment again if this happened. The only way to reduce the chance of getting a new breast cancer to 2% is to remove my breasts. And I really do not want to go through chemo again if I can help it! I'm meeting my original breast surgeon in November to talk about my options and timings for this. I'm keen to have my oophorectomy first and then deal with my breasts. Plus I have the small matter of finishing my masters, which I started again last week, so I'd quite like to time these operations around that if possible. Again, I'll post more here when I know what's what.

It's not great news, but I'm glad that I know. Imagine if I had not had the test! Knowledge is power, so I shall use this to make the right decision. In a way I'm kind of relieved, as it has confirmed to me that the cancer was nothing I caused myself, nor was it something I could have prevented. The hardest part about all of this is that my sisters and paternal cousins now have to go and take the test. They all have a 50% chance of carrying the gene mutation. It's easy for me, a 39-year-old woman with a life partner and no desire for children, to make decisions about having ovaries and breasts removed, but it's going to be harder for them to make decisions, as younger single women, if they carry the gene.

At first I was quite upset, as I felt as though I was really turning a corner and putting this whole episode behind me, and this was another spanner in the works. But now I'm resigned to it, and dealing with the practicalities of what it entails. Cancer really is the gift that keeps on giving! And having these surgeries will really make me feel as though I've done everything in my power to stop it from coming back, and give myself the best possible chance to live a long and happy life.

In other news, my hair is growing! Here's a comparison of now (left) and this time last year (right):

I had my 4 counselling sessions at the hospital, and I'm finished with that now. I did actually find them quite useful and have been implementing some of the things we discussed. I'm still getting fitter and losing my cancer weight (although my hip pain is preventing me from exercising as much as I would like). My toenails have all grown back (one of them ingrown, ouch!). I'm pretty much able to follow my uni readings and lectures, so I think my cognitive fog has lifted, which is great news for my studies. And I attended a 'sleep clinic' on Thursday this week, to try to help me with my sleeping problems. I learned some really useful tips, but they didn't stop me from waking up at 3.30am this morning and not getting back to sleep! Oh well, small steps.

I'm taking part in a few more studies, none which will help me directly, but all of which will help contribute to the bank of medical knowledge about cancer, and hopefully help someone in the future. Some of them are questionnaires, and most also require blood samples and regular updates. One of them is to test a new possible screening technique for ovarian cancer in BRCA mutation carriers, so I'll contribute to that until I have my ovaries removed. It feels good to be able to contribute to medical science and the furthering of measures to tackle cancer. The thought of preventing people in future from having to go through what I've been through is very motivating.

My friend Ben texted me to say he things BRCA stands for BRave CArmel, and I'll take that!