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!

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.

Health update

Today I had my regular visit to the oncologist before next Wednesday's chemo, which is round #3. This is primarily to check in about how it all went last time and make sure I'm okay to keep going. My oncologist, Dr S___, was not there today so I saw someone else from her team, Dr H___, a male oncologist. He was very friendly and helpful. First of all I had to describe how things went last time and how I was feeling. I explained that I'm doing really well, very few major side effects, and I've got good energy levels at the moment and have been cycling into work this week. I did mention that I'd found it quite hard in the week following treatment but I'm feeling more prepared for the next round.

He then gave me a physical examination to see how the lump in my breast was faring. After the first chemo I noticed that it had become particularly hard and was very prominent, but after the second one it had softened again. Over the last few days I mentioned to Tanai that I was having problems locating it, and that I suspected it had been getting smaller. However, I hadn't wanted to get too excited about it. Well Dr H___ agreed with me, it was definitely smaller. His professional estimation is that it has shrunk to half the size, and is now only 1.5cm! This is great news. Of course we won't know for sure until the scan after 2 more rounds of chemo, but this has definitely made me feel better about going in for round #3 next week. I feel as though I'm not on a treadmill, but I'm actually making some progress, and that even though the chemo makes me feel absolutely shit, at least I can see now that it's actually working.

Also, he had my CT scan results. I had the scan almost a month ago, but because of the recent virus infecting the NHS' computers, they could not access the results before today. Happily, the scans are all clear, so the cancer has not spread to my lungs, ovaries or other organs. This is definitely reason to celebrate.

Yesterday my friend Jana drove us both to IKEA to pick up some things for our homes. She needed some new shelves and I wanted to buy loads of plants and plantpots, and create a lovely indoor garden in our flat. We are still living in a relatively bare apartment as my furniture is on its way from Australia on a ship, but I wanted to have some greenery around me as I'm spending so much more time at home than I usually do, and I thought it would make me feel healthier and happier. I have missed being out in the countryside (I usually do a lot of weekend hiking but my energy levels are not allowing that at the moment), so I thought I'd bring some greenery inside. I'm very pleased with my first steps at building an indoor garden, and I'm inviting people to bring us clippings of their own plants to add to it! It all started with some lovely plants from Caroline, Elizabeth and Kim, and now I'm expanding my collection. Let's hope I have at least some of my grandma's green fingers.

My plant haul

Celebrating today's results with some champers!

Once again, while the NHS is taking very good care of my physical health, I'm having to look after my mental health myself. I truly believe that this is such an important part of my treatment and recovery, and both the physical and the psychological go hand in hand. I have been trying to do a small amount of yoga practice each day (when I have enough energy) and 20 minutes of mindfulness meditation. This is so important in helping me to focus, to sleep, and to ensure I retain some clarity with all these new thoughts running through my head. Last weekend I read a book called 'Post-Traumatic Growth', which is about ensuring that trauma brings about positivity in one's life. It examined the key elements of post-traumatic stress and then outlined some frameworks and mechanisms for dealing with going through a traumatic time, and remaining resilient and strong, and coming out of it with more wisdom, grace and learnings, and ultimately with positivity rather than PTSD. I have also been ensuring that I go for long walks when I have the energy (long walks are so good for my mental health!) and practicing gratitude: really considering the good things in my life and the things for which I'm grateful.

Tanai and I laugh a lot, there is so much to find funny in this world, and last weekend we had a long chat about the holidays we'd like to have after my treatment is finished, and our dreams for the future. It really feels good to have some things to look forward to and focus on during treatment. It reminds me of one of my favourite Walt Whitman poems:

No turning back! O youth, a weary road
Spreads out before you! Hidden grief lurks there,
And burning fires of vice lie smouldering there,
And disappointment's clutching fangs wait there;
But far ahead, up in the height of heaven,
Glitters a star. O, let thy constant gaze
Be fixed upon that star; step not away,
But gazing on the brightness of the guide,
Press forward to the end and falter not!

Cx

CT scan

This morning I was back at St Bart's for a CT scan of my chest and pelvis, in the imaging department. I've been here a few times: for my MRI scan, my bone scan and now my CT scan. I'm becoming quite a regular! I arrived this morning and they were running about an hour and a half behind schedule. I mention this because for all my many appointments, tests and treatment, this is the first time things haven't run to time. Quite a feat by our wonderful NHS. As I was waiting in the foyer I looked around the atrium at the lovely view. The outside of the building features the original stonework, but inside the King George V wing it's all light, airy and modern, and there are even trees in the atrium! It's a wonderful building.

When they finally got round to me, I was seen by another nurse, G___, who put in yet another cannula, which you would have thought I'd be used to by now, but unfortunately I'm not. He tried my left arm first, but it didn't work, so we had to do the right arm. My arms are now very sore. After he'd tested it with a vial of saline I was dispatched to the waiting room and told to drink three glasses of water. The patient after me was an older lady, with a woolly hat on, and she went into the treatment room. Her companion, a white-haired old lady of at least 70, promptly sat next to me and engaged me in conversation. I have noticed thus far that there's an unwritten rule about showing courtesy to patients, not asking too many questions, and not inviting yourself into their personal space if they are not willing. Well this lady didn't seem to care about any of that! Her opening line was 'So where've you got it, then? Your breast?'. Crikey, talk about cutting to the chase, lady! Actually I quite liked her frankness, and we had a great conversation about what's going on, what in her mind is the best way to tackle things ('a positive mindset') and how ridiculous it is that 'they're trying to get us all to drink so much water'. She clearly thought this was absurd. When the nurse came to get me for my scan, she said 'Good luck missy, have a great life'. What a fabulous old battler, she really put a smile on my face.

The CT scan uses a 'donut'-like machine, similar to the one used for my bone scan. I had to lie down on a flat bed which moved to push me in and out of a donut which scanned the relevant parts of my body. The technician, B___, pushed some dye into my veins through the cannula just before this happened, which the scanner then picks up. This was a high pressure dye, and just before she commenced, she warned me about the side effects. She said 'You might get a metallic taste in your mouth, your body will suddenly feel flushed and warm from your fingers to your toes, and you will feel as though you're peeing, but don't worry, you're not peeing'. Within three seconds, all of these side effects kicked in! It was so strange (especially the part where I thought I'd wet my pants).

The machine then quickly scanned from my neck to my pelvis and then I was good to go. I will get these results, and the results of my bone scan, when I see Dr S___, my oncologist, next Friday.

After my scan I had booked a contact lens check up and a sight test, which is a little overdue. I was chatting to the optometrist about how the chemo is drying my eyes out and I feel as though the contact lenses are getting a bit scratchy towards the afternoon each day. We have decided to switch my lenses from monthlies to dailies, which should help with this, but also reduce the chance of infection, as I'll throw the lenses away at the end of each day, so won't be putting the same ones back in my eyes each day. This will give me peace of mind, as I'm much more susceptible to infections while I'm on chemo. She has also advised that I wear my glasses at least a couple of days a week, to give my eyes some rest.

Now I'm back home and cooking a fish pie for dinner. (I still have my mashed potato cravings so I'm working my way through all the recipes I know that feature mashed potato!)