Cancer in the time of Coronavirus

It's been a few months, so I thought I'd post a little update. I have been re-reading over some of my past blog posts recently as I'm writing my Masters dissertation on 'Cancer and the Construction of the Self', and it's been fascinating to me seeing how I articulated my feelings during treatment. I'm so glad I kept this record, and I know that it has really helped others who are going through something similar.

I finished active treatment (again) towards the end of last year, with my final preventative breast surgery. I still have a number of appointments in the diary, a regular check-up with my ovarian oncology team; blood tests for ovarian cancer markers (both 3-monthly); visits to the menopause clinic and the Lymphedema clinic (both 6-monthly); Zometa infusions on the chemo ward (also every 6 months for a total of 3 years); and I have to regularly pick up prescriptions from the pharmacy for Tamoxifen and various other things I have on repeat prescription. 

In early March, as we could see what was happening in China and Italy, Tanai and I decided to self-isolate at home, to protect us both from the coronavirus. My immune system is still compromised post-treatment and I didn't want to take any risks. Tanai started working from home, and all my work could be done from home, so it was relatively easy to do. A week later, the government mandated a country-wide lockdown, and I was sent a letter and a text from the government requiring me to 'shield' for 12 weeks. This meant not leaving the house, and making sure no-one in my household exposed themselves to the virus, as I would be a burden on the NHS if I caught it. As we were already doing this anyway, nothing much changed. At first we struggled to get provisions, and were using up our storecupboard food (and toilet roll!). I couldn't get an online shop as all slots were taken, and our veg box became extremely unreliable with most things missing each week as they struggled with the surge of orders. For a few weeks we received a government box with essential provisions, and it was literally a lifeline to us until I managed to get on the Sainsbury's 'vulnerable list' so could get a grocery delivery once a week. We dutifully didn't leave the house, which has been quite tough, as we live in a small one-bedroomed flat with no outside area, and May was the sunniest month on record! Eventually we decided to leave the house for one hour a day, either early in the morning or late at night, for a walk or run. Luckily we live in an area which is full of offices, and very few residents, so we have felt quite safe as the streets are relatively empty. I'm hugely grateful for the fact that we have been able to properly shield, that Tanai has been able to work from home the whole time (actually the university closed so he had to work from home!) and I was able to switch the freelance work I had to remote work. 

Out for a dusk walk

NHS text

Most of my medical appointments have either been cancelled, or moved to phone appointments. I have missed one of my ovarian cancer blood tests, which will leave 6 months between tests instead of 3, but as I'm low risk they are not too worried. My local Boots closed, so we had to walk further for my prescriptions, but the Boots branches have implemented plastic shields for their staff and a limit to the number of people in the store at once, so again, I feel very safe. 

Since January, I have been working as a volunteer phone counsellor for Breast Cancer Now, supporting other women with a diagnosis on their 'Someone Like Me' phone line. I get paired up with women who have a similar situation to mine in some way, and we chat on the phone for an hour or so, with the regularity determined by their needs (some weekly, some monthly, some for just a one-off chat). I have found it very rewarding, as I love to help other people through their own cancer journey, and use my experiences for good. It's also making good use of my coaching training, as we are not there to give medical advice, just to share our experiences and help others see through the fog of their treatment and build their own resilience, finding their own resources to cope. Since Covid-19 hit, demand for the service has increased, perhaps because the NHS is so swamped, and I have had quite a few 'clients'. And of course, lots of the advice I give is no longer always valid! Their experience of going through treatment in these strange times is very different from mine. They are not allowed to take anyone with them to any of their appointments. They can't organise 'treats' for themselves on a good week such as going to a restaurant. And it must be incredibly stressful putting yourself in an immunocompromised position when there's a respiratory disease doing the rounds. There are quite a lot of changes happening. Elective surgery was paused for quite a while, and the women I'm talking to are not allowed to have immediate reconstruction during their surgery if they have a mastectomy. Understandably, many of them are very anxious, and it's nice to be able to help them in the small way I can.

I suspect I will also have to make compromises: my next Zometa is scheduled for August, and I'm reluctant to go into hospital for my infusion during this pandemic. The Zometa gives me another 2% reduction of the potential of recurrence, as well as protecting my bones from the affects of my treatment, so I have to weight that up against the risks. I am getting very worried about my bones, however, so I have decided to go into the hospital for this infusion. My bones are at risk due to the chemo drugs I have had, and the medical menopause I'm now experiencing, as well as the Tamoxifen that I am on for 3 years. Already I am experiencing a lot of bone pain, often so bad it wakes me up at night, and I really want to be able to still do the things that I love, like hiking and yoga, so I need to give my bones all the protection I can.

I am also experiencing incredible pain in my hands and arms at the moment. I am writing my dissertation for uni so I'm at the keyboard a lot, and the nerves in my hands have been damaged by the chemo. I get shooting pains in the back of my hand almost constantly, and the pain is waking me up at night.

Another long term side effect is lymphodema, which I have sporadically in my right arm, hand, leg and foot, and permanently in my abdomen and torso. This is because I've had so many of my lymph nodes removed, so my lymph fluid gets stuck and builds up. It gets worse when the weather is warm, which is a lot at the moment. My abdomen is so swollen that most of my clothes don't fit me any more! They are too loose where my boobs used to be, and too tight around my hips! So I've been selling a load of my clothes on eBay. I've actually been really enjoying it. Some of them only sell for 99p but it feels great to be getting rid of them and sending them to a new home. I have worn some lovely frocks in my time, and now it's someone else's turn. I'm also really loving my new flat figure, and experimenting with different looks. I've embraced being bra-less every day, and I've got some good ideas of the kinds of clothes I'd like to try. But as we are still mainly at home I'm rotating between the same small number of outfits for the moment!

I realise there are some niggles and moans here, but it's important that I am honest. I know I'm incredibly lucky that I've managed to get rid of cancer twice, and I have given myself the best possible chance of a long and happy life, but I do have permanent disabilities which have resulted from my treatment which are affecting me on a daily basis. I'm finding work-arounds and ways of dealing with them but that doesn't make it any less difficult on most days. 

Some of the swelling on my torso is making me a bit worried, as I have some strange swelling on the left hand side above my belly button. It could just be scar tissue, but my oncologist has referred me for an ultrasound, which I should have in the next couple of weeks, so fingers crossed that is nothing to worry about. I can't quite work out if it's always been there but my boobs were in the way when I looked down so I couldn't see it! Ha ha.

Anyway, my next blog post is going to be a guest post! Very exciting. So watch this space...

Here are some more govt and NHS messages and flyers that I have received.

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!

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!

Test results and other stuff

Following my last post about Scanxiety, you'll be pleased to know that my test results came back all clear. I had a little cry when my Oncologist told us, as I really had feared the worst. I feel as though I've been given a second chance, and I want to make sure I make it worth it!

Yesterday I had my first infusion of Zometa, or Zolodronic Acid. I have to have this every 6 months for 3 years. It helps protect my bones from the effects of sudden premature menapause that my other medication is plunging me into, and it also reduces the chance of the cancer coming back by a further 2%. It's administered by IV, and this was the first canula I'd had since my final chemo last September. I thought my veins would have recovered, but no! It took 4 goes to find a vein, and it hurt so much. But now I've had it done, I don't have to have it again until January. The side effects are apparently 3-4 days of 'flu-like symptoms', which I dismissed and headed into work today on my bike. But then in the afternoon it hit me like a bus. The non-air-conditioned office and intense heat didn't help! (It was 34 degrees at my desk today!) But now I really feel whacked out, my bones are aching, my head is all clogged up and all I want to do is sleep. I nearly fell asleep on my cycle home! Eek. Fingers crossed I will feel better soon. I also have calcium and vitamin D tablets on prescription: 2 a day. Thank you NHS for being totes amazeballs.

Other things I've been dealing with lately, include going to the lymphedoema clinic, and being fitted for a lovely sleeve and glove to help combat my lymphedoema (swelling of the right arm and hand due to having fewer lymph nodes to drain my lumph fluid round my body). Unfortunately heat is a trigger so this weather is not helping.

Sexy

I've also seen a physio to find out why my right hip is so sore. He's given me some exercises to do and I'm going back next week. Fingers crossed we can find out what's wrong and sort it, as I want to be able to go hiking and walking again, as well as not wake up in the middle of the night in pain!

Last week I had my final Herceptin, yay! A year's worth done and dusted. That's fewer times I'll have to go into Bart's for injections.

I've also been referred by my GP to a sleep clinic, but that's not until September, to try to help me sleep better (I'm sleeping so badly at the moment). And I've also been doing some counselling with the psycho-oncology services at Bart's, which is really helping.

So back on track! And we head off on our big, relaxing holiday on 8 August: 3 weeks in Canada. Really looking forward to relaxing and seeing some of that beautiful country, as well as catching up with our relatives there.

Finding my new normal

Hi folks. I thought I'd give you a little update as to how I'm getting along now that active treatment has finished. It's been over a month now since I had my final radiotherapy session, and 2018 has started well. I'm feeling stronger and healthier every day, my hair is growing and I'm adjusting to life post-cancer treatment. Of course, treatment isn't exactly over, but what I'm doing now is trying to prevent the cancer from returning, as there's no evidence of any left in my body.

My hair is growing nicely and I've started getting it cut in a unisex hair salon called Barber Streisand, to avoid the extortionate 'women's' haircut prices. My main aim is just to let it grow and try to keep it tame-ish while it does. It's darker than my old hair and has a definite kink in it, but we'll see what happens as it grows out. My eyebrows and eyelashes are also growing back, although very slowly, and I put mascara on for the first time in months the other day! It's the little things...

I've put on 10kg of weight since I started treatment in April 2017 (that's about a stone and a half in old money). It's gone on evenly all over my body, so while lots of people are graciously saying 'you can't tell', I'm currently unable to fit into most of my clothes and it's starting to really bug me. I'm doing as much exercise as my body will allow me to, and I'm eating very healthily, but it's proving difficult to shift. So far this year (3 weeks in) I've lost only 1kg, so still 9kg to go! Urgh.

On Friday I saw my oncologist again. My appointments with the oncology team are now getting less frequent. While during chemo I saw them every 3 weeks, now I see them every 3 months, and soon that will change to every 6 months, and finally only once a year. They're phasing me out! We had a great chat and she's given me the green light to start swimming again, so hopefully that will help me with shifting my chemo weight. Although chemo has finished, I'm still having Herceptin injections every three weeks (this is the monoclonal antibody I started having in June and explained about here) so I need to have heart scans every 3 months to check that it's not adversely affecting my heart. Last week's heart test results show that my heart is actually improving, which is great news! (Not that surprising as I've finished chemo and exercising much more these days.)

I've also started taking Tamoxifen, a white tablet that I have to take every morning for the next 10 years. And in 2 weeks I will start having Zoladex injections once a month. These are both hormone therapies. My cancer was fed by oestrogen, so the injections will shut down my ovaries to prevent them from producing oestrogen, and the Tamoxifen works by preventing any oestrogen from latching onto and feeding potential cancer cells. These drugs will send me immediately into an early menopause, and I'll keep having the Zoladex until my oncologist is happy that my body is post-menopausal naturally (so potentially until I'm 50 or so!). A medically-induced menopause is usually more severe than a natural one, which takes place gradually over many years, so I've been referred to the Bart's menopause clinic, where I will learn some techniques for dealing with the side effects. One of the main side effects is that my bone density will reduce, leaving me at greater risk of fractures and osteoporosis. To combat this I will start having bisphosphonate infusions (Zometa) every 6 months for 5 years, which slow down the rate of bone thinning, and also help prevent the cancer from returning. The other recommendation is that I do lots of 'weight-bearing' exercise, so I am making sure I get in at least 10,000 steps a day (walking is good weight-bearing exercise) and I have a stretchy band that I use to do a series of exercises every day with my arms to keep my bones healthy in my upper body. Although I love cycling and swimming, neither of these are weight-bearing so I need to make sure I mix it up.

My scars are both healing nicely and I have regained full movement in my right arm. I do have stiffness still, so I'm continuing with the physio exercises until that goes away, but I'm really pleased with how that's going. I also have some numbness in my armpit and just below my shoulder on the outer side of my arm, and unfortunately that's permanent nerve damage. It's a bit strange but I'm sure I'll get used to it. Weirdly, I've stopped sweating in my underarm completely, and the other women in my support groups tell me this is common. Bonus!

My breast looks pretty much the same as before, and the scar is almost imperceptible. When I self-examine, however, there is a big lumpy patch right where I found the original lump, and this is scar tissue. I will have to get used to how my breasts feel again and continue to self-examine regularly (as should you!).

My fingernails and toenails didn't quite survive after chemo. I lost a few of my toenails completely, and my fingernails started to crack and peel about half way down each nail. I'm now keeping them extremely short until the new nails grow, which is kind of annoying (I don't think I realised how much I used my fingernails for everyday things before!). I'm still getting quite bad bone pain semi-regularly, but this is a side effect of Herceptin, which I will finish in June this year.

I also found out that I am ineligible for the Add-Aspirin trial which I thought I would be on, so that won't be going ahead. I am, however, still part of the 100,000 Genome project, and I've been asked to take part in a focus group at St Bart's in February, to help them improve care for younger women diagnosed with breast cancer.

There's a lot of crap on the internet about cancer prevention (turmeric, anyone?) and in actual fact there's only one 'natural remedy' that studies prove genuinely reduces the chances of the cancer coming back, and that's exercise. So now that I have a little more strength and energy, I'm slowly reintroducing exercise back into my daily routine. I want my convalescence to be slow and effective, not rushed and ineffective, so I'm trying to be gentle with myself and not push myself too hard. But I've got a FitBit and I'm getting a little obsessed with the metrics. Firstly there's the step counter, and I'm aiming for a minimum of 10,000 steps a day. I've aced it almost every day so far this year, with my best day being 29,665 steps, and my worst day only showing 8,335 because I cycled everywhere that day. My average is around 15,000. Then there's the 'active minutes' metric, ie how many minutes per day that you're doing activity that gets your heart rate up. I'm averaging 100 minutes a day this year, which I think is pretty good going. I also want to avoid reverting back to Past Carmel's ridiculously packed social schedule, as I've realised the benefits of downtime and relaxation. So I'm not over-committing, and I'm being selective about what social activities I say yes to. Tanai bought me a place on a meditation course as a Christmas present, and I went last weekend. I've never done non-guided meditation before and it was quite amazing. I'm now meditating solo every day, 20 minutes in the morning and 20 minutes in the early evening. It's possibly too soon to ascertain the benefits but I definitely feel calmer and less irritable. And of course I'm still doing yoga with the magnificent Adriene. I don't quite feel strong enough to go out to a full yoga class yet, but I've found a class in Islington which is a short walk away from our flat, which is specifically for people who have had cancer, so I'm going to try that as soon as I feel up to it.

So there we are, I'm now project managing my recovery! I'll post here whenever anything significant occurs, but not with as much regularity as before. I may also include some musings and ponderings about my mental health, cancer in general, and what I've learned from this experience. But I'm keen to try to get away from the dominance cancer has had over my life for the last year, and have other things to think and talk about. Look forward to talking with you online and IRL about that other stuff.

The end, and yet just the beginning

So today is a pretty big milestone: I had my final radiotherapy this morning, which marks the end of 'active treatment' for me. After a challenging year, I'm so pleased I've reached this day just in time for Christmas. So this is the end of the treatment the NHS give me to nuke the cancer we found in February. As far as they're concerned, there's no evidence of it remaining in my body. From now on, all the treatment I receive (and there is still a considerable amount!) is to try to stop it from coming back, rather than treating what's there.

Tomorrow I take my first Tamoxifen: the little white tablet I have to take every day for 10 years, which aims to prevent the oestrogen my body produces from latching onto and feeding any future cancer cells. I will still have Herceptin every 3 weeks until the summer, and in February I will start my monthly Zoladex injections, which shut my ovaries down (again, trying to combat that damned oestrogen!). These medications will have their own side effects, but with my hair growing back post-chemo, and my strength returning little by little, I feel confident I'll find a way to cope.

Tanai and I are planning a quiet, relaxing Christmas at home in our little flat, where we'll cook yummy food and make plans for 2018. After the year we've had, we deserve to have our fortunes change next year.

I'm sure I will be a little contemplative over the next couple of weeks, and I plan to post something here about how I'm feeling in this transitional time. While I'm coming to the end of my active treatment, I know that this is just the beginning of the rest of my life as someone with a cancer diagnosis. I will have to navigate life in a new way, live with the knowledge that my body has changed, and will continue to be affected by my medication, and to learn how to deal with the fear of recurrence. In the meantime I plan to rest lots (I'm so exhausted after the last 10 months!), practice self-care, and slowly increase my exercise and social life again. Tomorrow is the first day of the rest of my life, and it's time to carpe the crap out of the diem!

More tests and trials

So last week I went to see the cardio-oncologist to get the results of my various heart tests. I was scheduled to have an echo test in the morning and then see the cardio-oncologist in the afternoon. I received a call from a research nurse asking me if I'd be interested in participating in a trial, to which I agreed (I'm always keen to contribute to medical science, as I am benefiting from it so much right now!). They were conducting a trial to see what type of heart test is the best type to use with cancer patients, so they wanted me to undergo a different type of test immediately before my echo test, and then they would compare the results. The trial test was an MRI heart test, where I had to lie in an MRI machine and hold my breath several times while the machine did its thing. Then I had my echo as expected, and then saw the cardio-oncologist. All the tests so far (including the heart monitor) show nothing out of the ordinary, so they are puzzled about my symptoms. They are going to investigate further, fitting me with a heart monitor for a whole week once I've had my next chemo, and they want me to come back and ride an exercise bike while hooked up to a heart monitor. Once again, I love the NHS for being so thorough, and it's good to hear that it doesn't seem to be cause for alarm.

Then today I had my pre-surgery tests: a mammogram, an ultrasound and an MRI. I'll discuss the results with my surgeon on 22 September when we'll plan my surgery. I've described these tests before so won't go into too much detail, except to remark on something. For the MRI I had to have a cannula inserted into the inside of my elbow so that they could inject the contrast dye during the testing, and they always flush a cannula with saline once it's in, just to test it. And the weird thing is, as soon as they inject the saline into my vein, I can taste it in my mouth! Isn't that strange? Fun fact.

So although I won't get the results from these tests for a while, the doctor who did my ultrasound told me the dimensions of my remaining cancerous lump, and it's 15% of its original size! And I still have one final chemo to go. So while the main purpose of chemo is to catch any stray cancer cells that have spread to other parts of the body, it's also shrunk my tumour to the point where surgery will be much less invasive than it would have been back in February.

Tanai drew the tumour sizes from my three ultrasounds, the original one, the half-way one and today's:

So tiny, I can no longer feel it. Here's to getting rid of it completely.

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