Cancer survivorship course and lymphedema clinic

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

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

New earrings!

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

Joining the class

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

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

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!