Rachmaninov, preparations and a mushroom

Catching sight of myself when cleaning my teeth this morning I saw that my right boob is now smaller than the left. The swelling from the operation has completely gone, and my boob has this odd flat shape at the side – I’m sure this will change again over the coming months.

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So, I thought I’d work out what the tumour was like. I rummaged through the fridge, ruler in hand, and worked out that the chunk cut out of my boob is the equivalent to a large chestnut mushroom, the tumour the size of a blueberry, and the smidgen of cancer in my lymph node smaller than a grain of instant coffee. Fortunately, I am totally unbothered about being a bit lopsided. If my boob gets any smaller, I could always crochet a fillet to put in my bra.

This week has been more hospital visits, more research, organising travel insurance refund for my cancelled holiday, a lot of project lumpy reading, lovely visits with friends, some super phone chats and spin classes. On a daily basis: 10,000 steps, a mindfulness session, and my lymphoedema exercises. My medical team were surprised to hear that I am at the gym again, but really pleased as exercise is one of the key ways to prevent a recurrence of the cancer. The professor and I joked that his stitching is great so there was no danger of my scars popping open midway through spin class.

Being in control of my treatment and choosing how I face cancer is very important to me. I ordered some great booklets from Breast Cancer Care, all free of charge. Alongside the Macmillan information, there is plenty to understand about possible side effects of treatments and how these can be managed. Some of the main side effects of both chemotherapy and radiotherapy are a sore mouth, change to taste and nausea. All a bit ironic at a time when your body needs the best nutrition it can get. So, I ordered the Royal Marsden Cancer Cookbook which has recipes for during treatment when your mouth may be sore and food taste odd. Top of the list to try making is Date & Maple Syrup Flapjacks.

 

Before one of my hospital visits I went to a lunchtime concert. It was a BBC Radio 3 concert with Vadym Kholodenko, a Ukrainian pianist, playing Rachmaninov (it’ll be broadcast on March 17th). That makes me sound hugely cultured, which I’m not, but I do love classical piano, and had my eyes really opened to it after reading James Rhodes’ book Instrumental. James Rhodes suffered dreadful abuse as a child, and listening to and playing classical music is how he has coped with unspeakable trauma. His albums are superb. Anyway, back to Vadym. My friend and I were sat such that we could see Vadym’s face throughout the concert. Eyes often closed, he was utterly lost in his music, totally focussed on his fingers moving across the keys, his face switching between pained anguish and sheer delight as he played. A few tears rolled down my cheeks – the Rachmaninov is beautiful, but his playing of it was exquisite.

My friend and I wondered how old he is, so googled him. My goodness, what a desperate story we found. Vadym lost both his daughters last year in a truly tragic way. How much of his pain does he now pour in to his music, and how much does that music provide him escape and some small solace? It was a reminder to me of the importance of music to the soul, how it can touch and help us, and I have certainly been using music as I’ve ventured in to this surreal new world. And whenever I need a laugh I just sing Lionel Ritchie’s “You are destiny, you are my one and only”.

 

 

Crochet, lumpy decisions and bad taste

A week on, and there is progress on my treatment decisions and I’m even upskilling myself on the side. 

Yesterday evening I went to a crochet class. It’s a skill I’ve always wanted and may be something I can amuse myself with as I go through the months of treatment. Our crochet teacher was very patient, encouraging (I was definitely bottom of the class) and gave us tea and biscuits. It was all a bit too Cath Kidston for my taste, but apparently a booming business. They even host hen parties, although the teacher did say she doesn’t let the hens near the sewing machines once the prosecco has been flowing.

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This took two and a half hours. A blanket would take me a year.

Earlier in the day I had seen my lovely professor again, armed with all my questions in my Project Lumpy notebook from the past week’s online research, advice from medical friends and general confusion. 

The clinic was the busiest I’ve seen it. On arrival, I was informed appointments were running an hour late. On a Monday the medical team have their Multi Disciplinary Team (MDT) meeting when they discuss all the cases, and I imagine this runs over when there are many and/or complex cases. So, appointments are then delayed. But, I can’t get annoyed about this, it tells me they’re taking great care, and giving patients the time they need. So, I settled down and read my books (there’s a limit to how much daytime tv I can endure). The tea man and his trolley even came round dispensing free tea and coffee to those of us waiting. I ended up waiting two hours. These are two of my current reads:

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I’ve used mindfulness for the past couple of years (I have an app on my phone, it’s that easy!) but I wanted to know more – and the Ruby Wax book explains it in an accessible and amusing way.

Deborah Hutton was taken at far too young an age by lung cancer, and she wrote her book about the practicalities of cancer treatment. There’s an interesting section on NICE guidelines which I wasn’t aware of. On the NICE website anyone can get details of the NHS treatment they should expect for any illness. Empowering stuff. Deborah also references a website called Healthtalk where patients share their experiences for a variety of illnesses. 

Whilst waiting, I spotted a woman, about my age, and she looked haunted by fear. She waited well over an hour for her appointment. A while later, she came out of the consulting room, gazing in to the middle distance, in silent shock. I so wanted to reach out to her and tell her I know how it feels, I know it’s overwhelming, I know it’s crap, but she’s not alone. Such is the surreal place where cancer takes us.

My appointment went well. My professor listened to my concerns and explained his thinking and all the research, probabilities and data behind the advice on treatment options. He even sent me off to Imaging (no pizza bleeper this time) for another ultrasound to check my lymph nodes again, I suspect more to reassure me than anything.

So, what did we discuss? Now I feel like Jennifer Aniston in those patronising L’Oreal adverts “Here comes the science bit – concentrate!”…..

Lymph Nodes

My professor talked me through the three options to address the possibility of cancer in other lymph nodes in my armpit (axilla). He explained that, in a case such as mine, the chances of there being more cancer is very low (hence my extra ultrasound to take another look at the lymph nodes to see if any were enlarged and merited biopsy. None of them were – that’s a fist bump from me).

It seems the medical jury is out on the benefit of doing any treatment at all to the axilla with regards to long term survival rates. There’s a clinical trial at the moment, POSNOC, in which some patients are having no treatment at all. There’s also a trial in America, Z11, which looked in to this. The reason is, presence of cancer cells in lymph nodes does not mean the cancer will recur, in fact the likelihood is incredibly low. So, the options:

  1. Do nothing. I’m having chemotherapy and hormone therapy (tamoxifen) anyway, so any treatment to the axilla is likely to be overkill (bad choice of word there?)
  2. Surgery to clear the axilla. The benefit of this is I would then know with certainty if there were any further cancer cells (even though that doesn’t mean the cancer would come back!). My professor said he has been persuaded many times to do this surgery and in the majority of cases the removed lymph nodes are all clear of cancer and perfectly healthy. The risk of surgery is damage to my nerves and lymphoedema. And as I have just had surgery to my armpit I now have scar tissue in there, which increases the risk of nerve damage. Professor Vaidya is very concerned for my quality of life and so does not favour surgery.
  3. Radiotherapy to the axilla, in addition to the radiotherapy I will have to the breast. Radiotherapy is not without side effects and risks, and having it to my armpit carries a risk of about 5% of shoulder stiffness. There is also a lymphoedema risk, but much lower than surgery. On the plus side, I may never need to shave that armpit again!

So, I ended up feeling very confident to make a decision to not have surgery.

I’m back on Monday 27th February to see my professor and radiologist again, just to confirm. What wonderful care.

Oncotype DX

As I mentioned before, Oncotype DX is a genetic test of the tumour to predict the likelihood of recurrence, but in my case the NHS do not fund it as I’ll be getting chemotherapy anyway (this is where those NICE guidelines are useful). I checked with my private medical insurers, and they will fund it. So, discussed this with my professor, and he will refer me through his private practice, at Princess Grace Hospital. He also said I can meet one of the oncologists there to discuss my case to get another medical viewpoint.

Now I’m feeling much more informed, and confident with my treatment decisions. I’ve read some awful stories of patients having challenges with their medical team, but so far that’s not been my experience, quite the opposite.

Yesterday was a good day.

And thank you for the continuing visits, calls, messages, cards and presents. Sorry if I don’t get back to you straightaway. But please know that they all really, really help. Thank you x

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Macabre humour

I’ve joked with some of my friends who have experienced cancer about playing the cancer card on occasion. There’s something about facing this vile disease which elicits a macabre response.  I suppose being able to laugh at cancer makes it easier to cope with, takes away some of its power. For example, on the tube a week before my surgery, I gave up my seat to a pregnant woman. She was wearing a “Baby On Board” badge. I wondered how my fellow passengers would react if I had a “Cancer On Board” badge and smiled to myself.

Your Difficulties Will Strengthen You

Life’s felt a bit up and down in the last few days.The brilliant stuff has been time with family and friends, some lovely phone calls and messages, a couple of great cinema trips (Lion and Toni Erdmann – both fantastic films), beautiful flowers which brought sunshine in to my home when there was a bitter chill and snow oustide, and more cards (I especially like the one below).

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I’ve also found some more great avenues of support. I called the Breast Cancer Care helpline last week and spoke at length to a nurse, who really helped my medical understanding and thought process. Then today I met the MacMillan team at the Whittington. My, what a stack of goodies! I’ve been signed up for an art therapy course, a living well with cancer two day course, been given the number of a yoga teacher who specialises in cancer patients and a hairdresser who offers free haircuts to women undergoing chemotherapy. Oh, and the personal trainer has been in touch about my 12 week course. Having cancer is turning in to a full time job.

The less great stuff is related to my treatment.  Firstly, I am really frustrated that my chemotherapy is not starting sooner. I know that it is standard practise to have a recovery gap between the operation and chemotherapy starting. But now I know I have to have chemotherapy, I just want to get on with it. I actually felt deflated after seeing my oncologist on Wednesday. Lost my mojo.

So, I kicked myself up the proverbial and got myself back to the gym at 7am on Friday. I strapped up my boobs in to my most heavy duty sports bra and did a spin class. And boy, what an endorphin rush afterwards! I got home and was dancing around the kitchen (cat was very confused). That is why I love, why I need, exercise. It’s not just about fitness, it’s one of the best stress relievers going.

Secondly, what to do about my lymph nodes. To recap, a tiny smidgen of cancer was in one of the lymph nodes removed from my armpit during surgery (still can’t put on roll-on deodorant, armpit too tender. I made sure I gave everyone a wide berth after the spin class). So, there might (and this seems to be much more a possibility than a probability) be other smidgens in other lymph nodes, which means we have to take some action. Do I have more surgery to remove all the lymph nodes, an axillary clearance? Or do I have radiotherapy to the area? The prognosis is the same for both options.

So, I listed the pros and cons of both (as I understand them) and discussed these with my radiologist today. He chucked a few more considerations in for good measure. I now have about 5 differing medical opinions. But what I don’t have is a decision, and it’s mine to make.

My radiologist agreed to take my case back to the next multi disciplinary team (MDT) meeting and I’ll see my professor again on Monday when I’ll make my decision. So, this week I’ll be doing lots of research, seeking advice, thinking and talking about what to do.

Or I could just toss a coin.

 

It’s been interesting talking to friends over the last week, there are so many stories out there about cancer, so many of us touched by this indiscriminate and vile illness. I knew of three people last week who were hearing if they had cancer.

 

Had a lovely visit from one of my friends, which involved a tasty takeaway and a fortune cookie each. This was the prophecy in mine.

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Not going to argue with that.

Getting the full works

Firstly, thank you so much for all the messages of love and support in the last couple of days. I can not overstate how much they mean to me and help me.

Today I met my oncologist, Dr Spurrell. There’ll be quite a lot of science bits in tonight’s blog, so you can always just skip to the picture of the cat at the end if you’d prefer.

She explained that all my treatment to date has been about focusing on the cancer we knew was there (and is now gone!), and the radiotherapy will be another localised treatment to kill off any rogue cancer cells.  More to come on that next week….

As an oncologist her interest is in the treatment needed for the whole body to prevent a recurrence of the cancer. There could be the tiniest traces of cancer anywhere in my body which are undetectable, so the treatments have to be rather indiscriminate, just in case. And for three reasons I will need chemotherapy: my cancer is grade 3 (aggressive little bugger), I’m young and there is one lymph node involved, all of which increase the chance there are rogue cells hanging about somewhere. So, we’re going to kill them off with a cocktail of drugs (FEC-T in my case).

This cocktail party comes in 6 instalments, three weeks apart, starting in March once I’m fully recovered from the operation. So that’s 18 weeks of  spring and summer booked up. To be honest, I wish it was starting sooner. I have another wodge of leaflets to read and websites to research so I can fully understand chemotherapy and potential side effects.

Then we’re also going to starve any of these little rogue cells should any decide to pop up in the coming years. My cancer is fed by oestrogen (it’s ER7, oestrogen positive) so the idea is to limit my body’s oestrogen production. That will be done with Tamoxifen, a medication I will take for about 5 years. I’ve got a leaflet on that too. What’s eye opening about all these leaflets is that they are produced by charities eg MacMillan, Breast Cancer Care, not by the NHS. More than ever, I’m seeing the huge importance of charitable funding.

Then we had a couple of other interesting discussions, especially pertinent given the media attention on the NHS (the BBC Hospital programme is on this evening – what an eye opener).

Firstly, there is a test called Oncotype DX which is a genetic test of the tumour to predict the likelihood of recurrence. If I had not had lymph node involvement (i.e.the cancer was stage 1), then this test would have been done to determine the need for chemotherapy. As it is, I’m being recommended to have chemotherapy, but my oncologist said I can privately fund the test. The cost is £2,500. Alternatively, I could use that money and go on holiday to St Lucia as part of my recovery if I’m having the chemotherapy anyway. But, it made me think about how tests like are saving the NHS huge amounts of money by avoiding unnecessary treatment.

I have private health insurance, so I will ask if they’d fund the test. Just curious to know more.

Secondly, I was bowled over (again) by the support network that the NHS provides. Whilst having chemotherapy, my immune system will be hugely compromised so I have to be hyper vigilant about infection. Dr Spurrell said I will need to check my temperature regularly, and if it goes above 37.5, even if feel well, I must immediately go to A&E where I will instantly be given antibiotics. Moreover, every patient having chemotherapy is on a list held by the London Ambulance Service. How amazing is that?

Feeling really good about knowing more about my treatment, even if what it involves is quite overwhelming and the potential side effects are tough. But it must be done.

Now for the cat. According to folklore, Dick Whittington had a cat who was an exceptional ratter. On Highgate Hill is the spot where Dick Whittington  heard Bow Bells which foretold his future as Mayor of London. That spot is outside the hospital, and is marked by Whittington Stone.

 

Prepare for the worst, hope for the best

This is the mindset I took in to today’s consultation to hear the results from my surgery and my treatment options.

The clinic was running very late, with a very long wait for my appointment (I saw the entire episode of Bargain Hunt, alongside another waiting patient who offered an incredulous commentary at ever price”£38 for soda siphons!”)

What I was told left me delighted and relieved. Also have some thinking to do.

My scars have both healed really well. The tenderness in my armpit and upper arm is normal, and I must keep doing the exercises to limit my risk of lymphoedema. Now for the cancer bit…

The tumour in my breast was 23mm (which is considered fairly small) and the margins are clear. In other words, they have cut all of the cancer out of my breast. Hooray! I asked my professor how much he cut out in total, and the total chunk was 55mm by 53mm – he even showed me a picture of it on his computer screen, “so that’s what been causing all this trouble” I sneered.

Then to my lymph nodes. There was a small (2.5mm) tumour in one lymph node, but no other lymph node involvement. Shows my lymph node was doing its job, catching those pesky cancer cells that had decided to leave my boob, stopping them getting to other parts of my body. This is where I have a treatment choice – more surgery to cut out more lymph nodes, or radiotherapy to the area. The intention is to prevent any recurrence. But outcomes are the same for both treatments. I meet my radiologist next Monday, so can discuss then.

And highly likely I’ll have chemotherapy – I meet my oncologist on Wednesday. I’ve always suspected this because I’m young (in breast cancer terms) and the cancer is grade 3. We need to show this cancer who is boss.

Finally, the question I had to ask, the one I was most concerned about – what stage is the cancer? It’s stage 2. If it wasn’t for the tiny lymph node tumour it would be stage 1. I nearly hugged my professor.

 

 

 

 

 

On a scale of 1 to 10…..

A lovely weekend with friends and family and more beautiful flowers.

Last Thursday I went to the hospital to complete my care plan with my breast care nurse. The purpose of the plan is to check in on physical and emotional well being, and offer the appropriate support. Consequently, I have a referral for a physical trainer who specialises in cancer patients (I am really concerned about losing fitness), and I learned about Cancerkin at the Royal Free, which offers lots of classes, therapies and support groups. Just what I was looking for.

The care plan questionnaire asks about your emotional well being. As I ranked all my emotions on a scale of 1 to 10, it struck me that I haven’t felt angry or sad or asked why me?  My main emotions through all this have been fear of the unknown and anxiety. The waiting for results is without doubt the worst time.

Tomorrow I get my pathology results and treatment plan. An important step. Another milestone. Of course I’m concerned, but nothing like I was before Diagnosis Day.

And I repeat my mantra: I did not choose to have cancer, but I can choose how I deal with it.

#ActOfUnity #WorldCancerDay

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Today is World Cancer Day, and to raise awareness and funds, numerous cancer charities sell unity bands in their colours. I bought the pink version from Breast Cancer Care. Scrolling through social media, there are hundreds of stories from people touched by cancer. It made me wonder how many of us are facing cancer right now. Incredibly, in the UK nearly 1,000 cases of cancer are diagnosed everyday, and of these 172 are breast cancer. Wow, so every day 172 people (men can get breast cancer too!) will have their own breast cancer diagnosis day.

I’ve become a bit evangelical about this, but it’s so important that we all check ourselves, know our own bodies, and go for any screening we are called for, or ask for it if we have concerns. Had I not gone to my GP in December, I would still be sitting here with a tumour inside me.

Checking your breasts

Cervical screening (the horribly named smear test)

Bowel and prostate cancer screening

Please look out for yourselves x