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!

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.

Scanxiety

Throughout my treatment last year, many women in my support groups would talk about ‘scanxiety’, which is the period between having scans (or being referred for scans) and being told the outcome, whether it’s good or bad. During this window of the unknown, your mind can wander down all the possible pathways, and in many ways the ‘not knowing’ is worse than bad news. I definitely felt this to some extent in the first five weeks after my initial diagnosis, before I found out my full prognosis and had a treatment plan. But generally, I’ve not experienced this over the past 18 months of my treatment. Instead, I would go for my scan, and await the outcome, knowing full well that I could not influence it with any amount of worry so why worry until you get the results, right?

Well this last couple of weeks I’ve come to know the true feeling of scanxiety and it’s not much fun. Basically, I went to my GP to talk about this hip pain I’ve been experiencing lately. I’ve always had problems with my hip and back, and I just thought that it’s being exacerbated by the fact that I’ve increased the amount of exercise I’ve been doing lately, to shift my chemo weight. But I’ve been experiencing acute pain in my right hip, and it’s been getting worse. I asked her to refer me to a physio, which she did, but at the same time she referred me for an X-Ray, just to check there wasn’t anything structurally wrong with my hip. A few days later she called me, and said that my bones look fine, but they spotted a ‘subtle lucency’ (shadow) on my X-Ray behind the bone which concerns them, so they need me to have some more scans so we can find out what it is. So this Monday I had a full body bone scan, and on Friday I will have an MRI. Right now I don’t know what the outcomes of these scans will be, but because I have spent the last 18 months reading and researching about cancer, and hanging out in online support groups with all kinds of women at various stages of the disease, I have a pretty good idea of what the different possibilities are. And instead of keeping my cool, awaiting the outcomes, my mind is wandering down the various paths in a way that is keeping me awake at night.

I want to be open and honest about how hard this period is for me, and not sugar coat it. I know that I’m looking much healthier than I did when I was going through chemo – I’m gaining hair and losing weight, my skin is much better, my nails have grown back and I have much more energy. But right now is the hardest time in many ways, because I’m coming to terms with what this whole experience means for the rest of my life. No, I haven’t ‘kicked cancer’s arse’, it is living with me, and will live with me forever. I have to re-learn how to be in the world and navigate everything that comes with it. I am trying to be positive and optimistic, but in reality I have to live with the sword of Damocles over my head. At any time the cancer could return. And I have no watertight way of preventing it from doing so. My challenge is to embrace my chance to live, without having any level of certainty about my long-term health. And this is hard. Exhausting, actually. But what’s even more exhausting is navigating the expectations of others that I should ‘move on’, and ‘put the cancer behind me’. As if it’s that easy, surely I can just forget about it and get on with my life. But this is my life, I can never go back to the person I was before my diagnosis, and I want to give myself the space and the permission to feel the emotions I’m feeling. I don’t want to have to cover up my pain and frustration just to make other people feel better.

Over the last few days I have had thoughts about my own death which I have not had at all for the last 18 months. Stupid things, like waking up at 4am and mentally writing a practical checklist of the things I need to send Tanai, like my Australian superannuation details and my social media passwords. Being choosy about what books I pick up because I probably won’t have enough time to read all the books on my ‘to read’ list. Composing speeches to my co-workers. Feeling bad for leaving Tanai before we have the chance to grow old together. Looking at old people in the street or on the tube and thinking how fucking unfair it is that some people get to grow old and other people don’t. I remember the moment a few years ago when I realised I was becoming a proper adult, when I made a significant purchase (I can’t remember what it was, a sofa or a suitcase or something) and I though ‘I wonder if that’s the last one of those I’ll ever buy’. Well now I’m thinking that about vitamins. Is this the last packet of cod liver oil tablets I’ll ever buy, because I’ll run out of time before they run out? And I don’t want to be thinking these thoughts, they’re just coming into my head, unbidden, and taking over. I thought that maybe by writing this down I would feel a little better, like I’d shared my problem, and relinquished some of the burden. And I do, a little, I think. Thank you.

So there you have it, no resolve, just scanxiety. I’ll fill you in when I have my results.

Studies and courses

Here's another update from me, to let you know how I've been getting on. I'm doing well, generally, and continuing my road to recovery. I'm feeling stronger every day, and have more energy too. My hair is growing back, which is great, although it has a distinct wave to it (it was completely straight before) and it's much darker than my old hair, but I'm taking that in my stride (I've always wanted curly hair!).

A few weeks ago I took part in a study at a London university which was examining cognitive function and psychological health in women with a breast cancer diagnosis. I spent 3 hours in a room in the basement answering questions and attempting difficult tasks on a computer while wearing an EEG cap to measure the activity in my brain. It was quite fascinating and I'm dying to know what they found over the course of the study. They were researching 60 women with a diagnosis and a control group of other women of a similar age and education level. Although I feel as though my cognitive abilities are definitely coming back (no more 'chemo brain'!) I'm still finding that I get frustrated with myself more easily when I get things wrong, or struggle to find my words. I suspect that is what they found when they analysed my brain. When I got things wrong that I felt I ought to have got right, I became so frustrated with myself that it affected my ability to get the next few things right too. I definitely came away feeling as though I should be a little less harsh on myself.

Wearing my EEG cap like a muppet

I've also been doing a 7-week course at the new Maggie's Centre in the grounds of St Bart's hospital, called 'Where Now?'. Designed for people who have finished their active treatment for cancer, it's perfect timing for me to be getting help and advice on getting back into the swing of things and coping with the after effects of treatment. There are 12 of us in the group, of mixed ages and cancer types (I'm the youngest) and we meet every Wednesday from 12-3pm. We start in the hospital gym and do an hour's worth of circuit training, with the wonderful physio, Claus, ensuring that our activity is tailored to our abilities. Then we have an hour's talk on a different topic each week (the first week was nutrition, the second exercise, and coming up are stress management and other useful topics) and then we have lunch together. So far I'm finding it really useful, and the Maggie's building is such a calm, beautiful haven. Anyone can go in there at any time, make a cup of tea, and talk to some of the specialist staff there. 

Inside Maggie's

I'm doing plenty of exercise and making sure I do lots of active minutes each day. Regular exercise which increases the heart rate significantly (160 minutes a week) has been proven to reduce the changes of the cancer coming back by 40%. This is significant enough for me to be fully prioritising working out! Over treatment I put on 10kg (a stone and a half in old money) and I've already lost a third of this already. It's slow going but I'm making sure I'm still feeding my body plenty of nutrients to aid its recovery. I'm eating lots of leafy veg and eating oily fish to help my bones. I've bought a 'Nutri Ninja' and I've been making delicious smoothies, including many green ones. Getting all my vitamins and minerals!

A beetroot smoothie

I've also had continuing appointments, so although I'm done with active treatment, I'm still a regular at St Bart's. I have a few Herceptin injections left and I'm on the Zoladex indefinitely. I try to ensure as many of my appointments are on a Wednesday as possible, and I keep my fingers crossed that the clinics are all running to time. Sometimes I have to wait hours for my medicines to arrive from the pharmacy. I kind of didn't mind the wait when I was having chemo, but now I'm only getting injections I'm keen to be in and out as quickly as possible. Everyone's so lovely there, though, and most of the nurses know me by now, so there is quite a jovial atmosphere and I'm always happy to see familiar faces. Over the last couple of weeks I've also had my regular echocardiogram test, to ensure my heart is still working well despite the Herceptin; a DEXA bone scan to see how my bone density is now that I'm being forced into the menopause; my regular oncology appointment; and I've also had to go to the dentist to get some work done (it never rains but it pours!). I've also had a follow-up with my GP too, it's one thing after another! But I feel as though I'm in safe hands, and it's nice to be easing myself out of treatment rather than disappearing suddenly. My GP has referred me to a sleep clinic as I'm struggling with my sleep at the moment, and this is affecting my daily life. I'm not having any problems falling asleep at the beginning of the night, but I'm waking up 4-5 times each night and I'm struggling to get back to sleep. Hopefully they will be able to help a bit.

NHS chic

During treatment I couldn't go swimming because my neutrophils were low and I was at high risk of sepsis, but now my immune system is doing much better I've started to go swimming in the mornings again. I go to a lovely pool in Kentish Town, near where I work. It's a Grade II listed building and was a public baths back in the Victorian era. Built in 1898 it was where working class people (who didn't have washing facilities at home) used to come and do their laundry, and wash themselves. Now it's been completely restored and I enjoy a tranquil swim under the sunlight-filled roof before work.

One of the other risks my surgery brought about was that of lymphoedema, which is a permanent swelling of the arm and hand on your surgery side. Basically our bodies have a lymphatic system which is constantly moving lymphatic fluid around all the  time, and as I had some lymph nodes removed from under my right armpit during surgery, my lymphatic system is now compromised, so the risk of localised fluid retention and tissue swelling in my right arm has increased. I only had 2 nodes removed, in order for them to check whether or not the cancer had spread, and as they were fine, I didn't have any more removed (some people have them all removed, putting them at a much higher risk), so I didn't think it was likely. I have been diligently doing the exercises given to me post-surgery in order to keep my lymph system going as well as possible. However, last weekend was a very hot weekend by the UK's standards (highs of 29 degrees!) and unfortunately on Sunday my right hand started to swell.

Fat right hand

The swelling remained for a few days so I called my Breast Care Nurse (everyone has a dedicated nurse they can call at any time) and she advised me to pop into the clinic to see her. She measured the circumference of my arm and hand at various points between my knuckle and my upper arm, and at all the points, my right arm was a centimetre wider! But they're still not 100% sure it's lymphoedema, so she's referred me to the specialist clinic. She's also ordered me a compression sleeve and glove for my right arm and hand, which I should wear to encourage the circulation of my lymph fluid. Strangely I'm finding this quite upsetting, even though I suppose in the grand scheme of things it's nothing! But I can see it all the time and it's a constant reminder of the changes my body has been going through. Fingers crossed it's just the heat and it will go down a bit when the weather cools.

[A few days later]
The hand swelling has gone down quite a lot! It's not quite the same as the left hand but it's no longer quite so fat and sore. Hurrah!

I'd better sign off for now, as this is getting very long. Will do another update soon.