Walking with 'The Breast Cancer Beast'

It’s exactly a week after chemo number 3 and I’m pleased to be able to report that I’m feeling good.

Last Friday evening I did suffer with some nausea, (the first nausea I’ve had so far) and I did feel pretty rotten with it. It was the same as the feeling you have when you’re very drunk and you’re not sure if you’re going to be sick, but withouth the room spin (or the calories). At first I thought it was a sign that session number 3 was going to get me, but I quickly realised by Saturday afternoon that I had been a bit of a muppet and taken my anti-sickness tablets incorrectly. I had taken 50% of the dose I should have taken and I think this was the reason the nausea had broken through. I was very annoyed with myself but I guess I won’t make that mistake again. The nausea had passed by Saturday lunchtime and things were back to normal.

For the rest of the weekend and all of this week I have felt absolutely fine. I have carried on with my normal days and even exercised plenty and the only thing I have noticed is that by late evening I am pretty tired. I have been falling asleep on the sofa around 9.45/10pm which is unheard of for me (that’s Dave’s domain, much to my disgust) and so I have retired to bed a little earlier than usual. Apart from that, I have hardly been affected by my latest round.

Although I’ve been physically well I have been a bit fed up this week. I have spent a bit of time wondering ‘why now?’ I’ve haven’t felt it on previous sessions and I am keeping really well so why have I suddenly felt fed up?

I have worked out it’s because I’ve been a bit bored this week. I know a lot of people who are busy and stressed day to day would be thinking ‘just make the most of having to do nothing and having no pressure’ but that is easier said than done. Time off work with nothing to do all day is potentially idyllic when it’s your choice, not so attractve when it’s forced upon you. Large chunks of my pre-cancer life have temporarily disappeared as a result of going through this treatment – work, evening socialising, regular gym, any desire to shop for clothes etc etc and as a result I have big gaps to fill. I have even been ‘stood down’ from school run duty this week (much to my horror/sadness) as my youngest son, Joe, is ready to walk home on his own from school. To be fair, I’ve been lucky to hold onto the job for so long really, but the irony of it stopping just when I have more time than ever on my hands isn’t lost on me.

As I said very early on on this blog, I’m generally a busy person who does everything fast and so slowing down and doing very litte is proving quite a serious challenge for me! What I have realised is that I need events/people/purpose in my life, I am a social animal and need interaction and productivity to keep me thriving. So, I have made sure that my diary next week is much fuller than it has been this week and that will certainly prevent any futher episodes of being fed up.

I have 2 more weeks to build myself up before session number 4. The next one will be a completely new type of chemo and I have found out from various sources that this one may affect me more.

So, I intend to enjoy my next 2 weeks whilst I can and keep eating whilst I can still taste!

IT’S NEGATIVE!!!

I am so thrilled I can’t tell you.

It feels like the first piece of good news Dave and I have sat and listened to since my diagnosis in September and since we stepped onto the ‘breast cancer roller coaster’.

I went to see my oncologist again this afternoon. It’s the first time I’ve seen her since I initially met her and she explained the treatment I’d be having. I was hoping she would have my BRCA results, but it wasn’t the first thing she mentioned when we entered the room. She started by asking me how I was and the later said ‘did you receive my letter about your gene testing?’ Obviously, I hadn’t but I presume it’s on its way to me.

For the first time in a while I felt nervous waiting for my appointment today because I knew the result of the gene testing would determine the path I followed after my chemo had finished. Had it been positive it would have meant a double mastectomy and both ovaries removed, more drains, more time off work, possible reconstructive surgery etc etc

A negative result means a much less complicated path to follow. I need to have just one more small operation to ensure clear margins on my 3rd tumour and once I have recovered from that a month of radiotherapy followed by 10 years of Tamoxifen, oh and a forced menopause – but I’ll still take all of that over a positive BRCA result!

The other real positive is that it means that my cancer does not have any implications for anyone else in my family which I am very relieved about.

My oncologst also discussed my treatment with me today. She seemed really pleased with how I’d coped so far with the first type and I asked her if  I should expect the second type I’m having (sessions 4-6) to be worse. She said it really varies from person to person but the second type (Docetaxel) generally causes less sickness but can make people very tired and their muscles and joints ache (similar to flu like symptoms). So at least forewarned is forearmed as they say.

For now, today is a very good day.

Of the 11 obstacles (I know about) I am over 5 of them.

I have chemo number 3 this Friday (17th) and that will take me over the 6th obstacle and exactly halfway through my chemotherapy sessions.

I have realised that, for me, one of the scariest aspects of this cancer journey has been the waiting and the fear of the unknown.

Waiting for diagnosis, waiting for histology results, not knowing how the chemo will affect you, not knowing how you’ll cope with hair loss andnot knowing what’s next on the journey. As I’m approaching halfway through, my results are in, my hair is out and I have a couple of chemo’s under my belt.

Whilst I know I still have a long way to go, the fear and worry is dissipating and being replaced with a sense of calm and control.

Finally, it is starting to feel as though I have a grip on this cancer instead of it having a grip of me.

The beast is still here, I am still waking with it, but I can finally start to imagine the moment we go our separate ways.

Friday 3rd January 2020.

It’s a new year, a new decade and a week after my second chemotherapy session.

Before I talk about how I’m feeling let me wish you all a very happy new year! I genuinely hope that you celebrated in style and have high hopes and aspirations for the new year ahead.

I’ll be honest, it’s been strange new year for me. I’m entering a new year knowing in advance that a large proportion of it is probably going to be shit. I’m not saying that in a self-pitying way or even in the hope of sympathy, it’s just a fact. I have 4 more chemo sessions ahead, at least 1 operation, a month of radiotherapy and the glorious menopause on my horizon for 2020. That’s why it’s weird, I don’t think in the history of my life to date, have I started a new year with advanced knowledge that at least 6 months of it could be pretty bleak. (I guess I have been lucky to date).

Having said all of that, Dave and I discussed this on NYE, I’ve duly processed it and filed it away and as a result I am not feeling bleak at all. In fact, I am absolutely ready to get through everyone of those obstacles and throw some good times in the middle of them all for good measure. I have a process that needs to be got through but I’ll be damned if I can’t enjoy myself somewhere along the line.

The great news is that I seemed to have coped pretty well so far with Chemo 2. I’ve had a bit of heartburn again and am drinking gallons of water to keep my bowels moving (possibly more information that you needed to know) and a few mouth ulcers have appeared over the last couple of days. However, apart from that I haven’t even felt as tired this session as last time and I haven’t had the back ache so really can’t complain at all. I can even still taste everything!

Things may change next session but for the time being I am grateful for small mercies. It has allowed me to enjoy Christmas and New Year with my family and that is priceless.

What has been interesting is the hair (or lack of) situation. It’s now been 10 days since I shaved it off on Christmas Eve. I very quickly adapted to the Sinead O’Connor (and optimistically Demi Moore) look as did Dave and the boys. In fact, I spent most of Christmas ‘embracing the shave’ with nothing on my head at all, pleasantly surprised at how quickly I got used to it. However, after about 5 days I moved from the Sinead O’Connor look to a sort of scabby, mongrel dog look which pleased me less. Basically, the stubbly bits started to fall out too, but annoyingly not in a nice synchronised manner. Like a baby I must have been rubbing them off as I slept resulting in patches, some of which were balder (and greyer) than others.

So, a couple of nights ago, having had enough of the scabby dog look, I asked Dave to take a razor blade to my head. Understandably, he was a bit reticent at first but did a great job of removing any stubborn stubble. We did laugh at the fact we hoped it would be the first and last time he needed to ‘shave his wife’.

Now that’s done, I’ve moved firmly into a Gail Porter look. It takes a bit of getting used to again because now I definitely look like I have cancer (or alopecia) as opposed to a cool buzz cut. Also, my head (whilst a nice shape) is extremely white! So much so that I’m slightly embarrassed to admit that I’ve rubbed in a bit of gradual tanning moisturiser on today in the hope it takes the shine off!

The hair journey is now over. It will look exactly as it does now until to starts to grow back (hopefully around May) and that will be a whole new chapter again. Apparently, hair grows on average ½ an inch a month so it will be a fairly slow process.

Interestingly, I think my nose hairs have fallen victim to the chemo too as I have noticed my nose running a lot more. I was warned about this but had conveniently forgotten.

So, for now I just need to get used to my new image, whether it be me in a wig or me totally bald. Whilst neither option is my ideal, I haven’t yet decided which I prefer and may well just switch between the two, with a hat in the house to keep the cold at bay.

Before chemo number 3 (hopefully January 17th) I am likely to receive the results of my BRCA gene test. I am hoping, beyond hope, that it comes back negative………..I’ll keep you posted.

I have always had short hair. I have had chin length bob styles in the past but that’s as long as it’s ever got. Despite never having long luscious locks, I have always liked my hair and on a night out, typically, 70% of my time spent getting ready would be spent on my hair, not my make-up. I’ve always been rubbish at make-up.

When I was told that chemotherapy was recommended for me (back in October) I was given a prescription for a wig at the same time. Hair loss is inevitable with chemo, unless of course you opt for the cold cap and try to save your hair. I stopped the breast nurse as soon as she even mentioned the words ‘cold cap’, I don’t do cold if I can help it. I like my hair but not enough to freeze my head for any length of time so that wasn’t an option.

So, I knew it was going to come out but as with everything else on this cancer journey, it’s a bit of a waiting game. People say it generally comes out between chemo 1 and 2 but that’s period of 6 weeks so it’s not very specific. The author of the ‘Tea and Chemo’ book I have been reading said hers started to come out two weeks after her first treatment, and as she had exactly the same chemo as me that gave me a steer. As it happened, she was pretty bang on.

I started to notice hair falling out as I brushed it exactly 16 days after my first chemo (Sunday 22nd December). When I pointed it out to Dave, he gave me a big hug and at the time I thought I was ok with it, but thinking about it, it did unsettle me for the whole of that day. I think I just needed time to get used to the idea that it was actually happening.

I did smile to myself at the fact that I’d timed my first chemo perfectly to feel well for Christmas week (for the boy’s sake) but hadn’t anticipated my hair starting to fall out three days before bloody Christmas! I was determined to try and hang on to it for a few more days as I had a Christmas meal out with Dave on the 23rd and drinks in the local pub on Christmas Eve.

What surprised me most was the fact that my hair felt dead on my head and that was what I really didn’t like.

When I washed and blow dried it, it felt lifeless and when I tugged on a stray hair several would come out in my hand and some were falling onto my shoulders.

I very quickly realised that the process of my hair falling out was more distressing to me than the prospect of having no hair at all.

So, I decided it needed to come off.

I contacted my friend, who is a hairdresser, and she kindly dropped some clippers round to me on Christmas Eve. I thought it best to do it Christmas Eve night (after the pub of course) because that way, if the boys were upset by it, it would all be forgotten the next day when the presents were being opened. I chatted to the boys about it and explained that it would all come out eventually anyway and I didn’t like the feel of it and they readily accepted my decision. Whilst Dave didn’t stand in my way at all, I could tell he was really anxious about it happening, I, however felt fine about it and was very keen for it to be gone.

Maybe it was my way of taking control of a situation you have little control over? Who knows…?

We got back from the pub, had our hot roast pork rolls and got started.

I offered to let the boys do it if they wanted to and whilst they were both enthusiastic at the prospect of being let loose with clippers on a head of hair, the reality was a bit different for my eldest son. He did one stroke of the clippers and then wanted to stop. My youngest son, however, was in his element and my eldest joined back in as things progressed.

Was I bothered about having my head shaved? Genuinely, not at all.

Before I started losing my hair, I had thought it was shame it had to come out because up until that point, to the outside world, no one would be able to tell you were being treated for cancer. Once you had to start wearing wigs, hats, scarves or just be bald, everyone would know.

However, when my eldest son and I chatted about it one night, we both concluded that of all the possible side effects of chemo it really wasn’t that bad. It was just hair and it would grow back. I would still be the same person regardless. Once he and I had chatted this through, I was at peace with it and got it all in perspective, so when the shave happened, I was absolutely fine about it.

There are some interesting things about shaving your head.

1) You realise if you have scars on your scalp. I have two. One from an accident as a baby and one from a biking accident in Melbourne – they actually make me look quite hard!

2) We all have a lot of hair on our heads, short hair or not. There was a huge pile of hair on the floor when it was done, it looked like a small dog!

3) Once your hair is gone, you can really see your face – there is no hiding any features when you don’t have hair

4) It’s cold without hair. I have a new sense of empathy for bald blokes and cold weather

So, Christmas Eve 2019 was the night I became bald.

I’m now sporting a Sinead O’Connor look, until the little dark (and grey) tufts in the hair follicles fall out totally, and then I will move to a Gail Porter look.

I have a wig and a cute bobble hat for when I want to wear them and for the rest of the time I might even embrace my baldness (with a great pair of earrings).

As far as I am concerned it is one more hurdle I have overcome and I am still smiling.

Chemo number 2 is tomorrow (27th December) and then I will be one third of the way through that stage of the journey.

As always, onwards and upwards!

Let’s talk about the much-maligned chemotherapy.

The word fills most of us with dread yet really it does a great job. To steal an analogy from the very witty Jackie Buxton who wrote ‘Tea and Chemo’ (which I am reading and enjoying) she calls it the ‘clean up team’. It’s designed to do exactly that, sweep up any leftover cancer cells that may not have yet formed into anything the eye can see and make sure the pesky blighters don’t multiply and resurface.

At first my surgeon predicted that I was ‘unlikely to need chemotherapy’ to which I felt huge relief. However, as things progressed, twisted and turned she changed her minds to ‘definitely recommending chemotherapy’ to which I also felt huge relief – at least if I have it, I won’t be able to look back and regret the decision not to have it.

The bit that gives us all the fear are the side effects and there is good reason for that.

But before we talk about the side effects, there are a few things I’m going to bet you didn’t know (and neither did I until I found myself on this shitty journey).

Firstly, chemotherapy can have long term side effects. I had no idea. I knew it was horrible at the time but had no concept it could leave you with damage to your heart (to name just one possible long-term side effect) or an increased risk of a secondary cancer (nice).

Secondly, when you go to the loo after chemotherapy you have to close the lid and flush – you’re wee is toxic and if you go in the middle of the night you are advised not to let it mellow until the morning but to flush it away immediately. I have to presume that Severn Trent Water are all over this….

Finally, if you have sex during chemotherapy (not top of my priority list right now I’ll admit) your partner needs to wear protection. Your bodily fluids are also toxic! Frankly, I’m surprised I don’t have a Ready Brek glow around me.

So, onto the side effects. There are loads and I think they differ from one drug to another and also not everybody gets everyone so it’s basically a waiting game to see which from the lovely list affect you.

In terms of sickness and nausea, I think chemotherapy of today is very different from that in the 70’s. Medical advances seem to have helped get the sickness under control. You take anti sickness tablets 1 hour before your treatment, they give you anti sickness at the same time as the drugs and you leave with emergency anti-sickness tablets too. I’m guessing this isn’t the same for everyone and sadly, some people probably do still suffer from this.

For me, the effects of this first session hasn’t proved too bad at all – thankfully.

My appetite changed slightly the day after I had the drugs but quickly went back to normal. I haven’t had any nausea at all but did have some pretty wicked heartburn (strange I know) on about day 4 post treatment and a sore back (could be completely unrelated to the chemo). I also felt really low in energy for a couple of days and had to do quite a bit of sitting down and resting but haven’t needed to go back to bed at all. My appetite has been fine and I can still taste things which is a bonus. So, all in all it feels good to have ticked one off the list with five more to go.

I am under no illusion that they will all be like this one. As I understand it the side effects get worse as the chemo cumulates in your system. Also whilst reading ‘Tea and Chemo’ last night I found out that the author had exactly the same chemo as me, three lots of Epirubicin and three lots of Docetaxel (Taxotere) and she reported that she found the first three pretty straight forward but was knocked sideways by her final three.

She described pains in her muscles and joints as if someone had them in a vice, she described a mouth full (literally) of mouth ulcers, gritty eyes, no saliva and that everything she ate tasted like it had been dipped in Bi carbonate of soda and mud! She didn’t even mention that you can lose fingernails and toenails too.

So, it seems I have all of this to look forward to next year, (Happy New Year to me) but I guess fore-armed is fore-warned and for now I feel good.

Christmas is around the corner, I have 2 boys who will be very excited to finish school next week and start enjoying the festivities, so whilst I can enjoy it (and still taste the food associated with it) I damn well intend to!

Happy Christmas everyone who is following my blog and thank you for your unending support, it means the world.

Have a great Christmas with your friends and families.

On the 6th day of Christmas my true love gave to me….chemo-ther-a-py!

Friday 6th December 2019 my first chemo session.

I was initially given an appointment time of 4pm which was then pushed back to 4.30pm. I couldn’t help thinking it was a bit of a naff slot really as I knew I’d be waiting around all day, potentially getting anxious, until it was time to go.

As it happened, I kept myself pretty busy (there’s a surprise) doing jobs in town, making a curry, having a catch up with a friend and generally trying not to focus on what was coming towards me.

Dave had wanted to come with me, at least for my first session, but when we got the time of 4pm it made it difficult because of the boys so we decided he would stay at home and I would ask a good friend to take me. She was picking me up at 3.45pm.

When I came to say goodbye to Dave, he enveloped me in a massive hug, wished me luck and told me it’d be fine and he’d be waiting for me when I got home. When I pulled away from him, I saw tears in his eyes and him trying to hold it together. My big, stoic, Northern Irish hubby, my rock had been brought to tears by what this horrible disease is putting me through.

I ran out of the door, composed myself for thirty seconds on the doorstep and then dashed to my friends waiting car. ‘Let’s do this’ I said as I jumped in. I was wearing a t shirt (so they could access my PICC line) underneath my shirt and the logo said ‘Fearless’ – I’m not sure it was strictly true but made me feel strong.

I had been to the Aylesford unit (where they administer the chemo) three times prior to this visit and each time I had cried over something. I was determined today to try and get in and out without tears, not that there’s anything wrong with tears, I just didn’t want to be known as ‘Blackwood the Crier’.

We arrived pretty early and sat in the reception area waiting to be called. Almost as soon as we’d sat down one of the nurses came over and asked me would I like a ‘care package’, they are given out to people going through their first chemotherapy session and have been organised by a lady who has been through the same treatment and wanted to do something for other patients. It was such a lovely gesture that I very nearly broke down in tears there and then! She handed me a huge hamper full of lovely products from toiletries to nail varnish, chocolate and tissues – it was like they knew me personally. The label on the side also had ‘young female adult’ which made me smile.

I was soon called through and I left my friend looking after my package and bag.

I’ll admit I had to take a pretty big deep breath as I walked through those doors. You have to make a big psychological adjustment to be able to go for chemo, especially when you are feeling as well as I was. The weird thing about this whole journey is that from finding the lump in July to this point I haven’t felt ill from breast cancer. I’ve been through biopsies and two operations and am putting myself through 6 rounds of chemo all whilst feeling perfectly well. Having said that, I’ve made the psychological adjustments necessary and I know it needs to happen.

The unit was really busy and you could tell the staff were under the pump. I saw my friend from the gym which was lovely and then I was shown to my ‘chair of doom’. The nurses perform the necessary checks, blood pressure, temperature etc and then they basically start to prepare your chemo. My mate who had come with me was shown into the unit and found a chair so that she could sit and keep me company. As I glanced around the unit it confirmed once again that cancer is totally indiscriminate – it can get anyone and everyone. Sadly though, I still felt like I was the youngest person in there.

Once the liquid is hooked up to your PICC line and starts going in, a nurse stays close by and watches you for any reactions. I could feel a very slight burning sensation as it went in so they turned down the speed at which it was going into my line. I was having a combination of two types of chemo and the first one was bright red, once that had finished the machine beeped consistently for a while. I could sense my friend getting concerned about the beeps and whether they were normal (she was just looking out for me) and I joked to her ‘do you think I’m in cardiac arrest?’.

The second lot was administered and all up it probably only took about an hour to get the chemo into my system. At the end of the second lot my vision felt a little blurry, not horrendous, just a bit out of focus. My friend asked the nurse if this was normal and she said it can be. It soon passed and everything went back to normal.

During the process the nurse treating me had organised medication for me to take home with me and briefed me on how to use it. There were anti sickness tablets for 2 days after treatment and different anti sickness medication to use if necessary. There were also 7 days’ worth of injections I needed to give myself to increase my white blood cells and she briefed me on how to do this. It was a lot to take in but my friend typed excellent notes and texted them to me.

It was all over about 6.30pm by which time the unit was much quieter and calmer. It became apparent though, chatting to the nurses, that they very rarely make it home on time. They are really dedicated and it makes me grateful every day for the health service we have, I know I am in good hands.

My friend and I left the unit about 6.40pm and headed home to start our respective Friday nights.

For me, it felt like a waiting game.

Waiting for it to take effect.

Waiting to see how I felt.

Waiting to see if I could cope.

My appointment came through to have my PICC line inserted on Thursday 5th December, the day before my Chemo was due to start, they told me it would take about and hour and a quarter.

I had no idea what to expect from this procedure and chose not to look anything up on the internet before I went. Up until this recent cancer diagnosis I have always been a bit squeamish and am known amongst my friends for being a bit of a wimp where all things medical are concerned.

I almost feinted when Max bumped his chin in reception and they tried to glue it in A&E. I was leaning over him trying to console him and as he cried the gash in his chin just wobbled at me! I felt a rush of heat come up my body from my feet but thankfully by fanning myself with the consent form I managed to avert an embarrassing feint.

A few years ago, I decided to make myself give blood firstly because it’s an important thing to do and secondly to try and harden myself up. It worked on both counts but wasn’t a smooth process. I think I managed 9 donations (before the cancer diagnosis) and I feinted twice. But with perseverance and a few changes to what I did on the day, I got there in the end. Sadly, my blood giving career has been cut short but this bloody cancer.

Anyway, back to the PICC line. Basically, a PICC line is a peripherally inserted central catheter. It is inserted into a peripheral vein your arm (around about the elbow) and threaded up through the vein, across your chest and downwards to sit in a central location in a larger vein closer to the heart.

I knew things were serious when I walked into the room and there was a bed set out and a piece of machinery next to it and there were two nurses present. After signing the consent form, I had to take off my top so my right arm was free of any clothes. They said they wanted to put it into my dominant arm and I didn’t protest as neither arm is a ‘good arm’ for me anymore.

Once I was lay on the bed there was around 15 minutes of preparation. The assistant nurse completely covered all of my body with brand new sterile sheets and covered all the wires of the equipment. The nurses doing the procedure had to scrub up and get her gown and hat on then I think all the relevant tools and kit were opened from brand new sterile packages and laid out behind her.

I had absolutely no idea how she was going to manage to shove it up the arm and move it where it needed to go and having seen her do it, it seemed like a highly skilled procedure. Firstly, she used an ultrasound to look at the size of my veins and find one of a good size. Unfortunately for me none of them were huge which meant she couldn’t put anaesthetic in immediately before she started as this makes the vein even smaller. So, she started by inserting the PICC into my vein first and once it was in, she administered some anaesthetic so that she could advance up the arm. This bit didn’t hurt it just stung a little as the anaesthetic went in.

She then started to try and ‘advance’ up the vein which I could literally feel as a sort of tugging sensation in my vein – it wasn’t painful but just weird. With her first attempt she just couldn’t move up the vein and she kept saying ‘I’m in and it’s bleeding beautifully but I just can’t advance’. My first thought was what a wonderful oxymoron ‘bleeding beautifully’ was. Although I sill had no idea what she meant by it.

In the end she had to take it out and try again and second time round she managed to advance upwards. As I had a block thing sat on my chest it was showing her an image on her monitor but not like an x-ray it just looked like a grey line. Then when the PICC came into view on the screen (as a lollipop shape) she just needed to guide it down the grey path on the screen. The problem was it kept wanting to go up towards my neck and not down towards my heart. After I turned my head in a certain direction and took a few deep breaths she had it in the right place on the screen.

The end of the procedure entailed measuring the amount of line left outside my body and checking that two wires (that had been used to advance the PICC) had been taken out of my body.

There seemed to be quite a lot of blood being mopped up with gauze but as I didn’t really look during the procedure, I’m presuming that was the evidence of the vein ‘bleeding beautifully’.

It took about 45 minutes all up and I have to say it didn’t really hurt at all, it’s just a weird sensation. I also must take my hat off to the nurse who performed it. It seemed like a very skilled procedure and one she was very good at. She was also very kind to me during the whole time I was there, chatting away and putting me at ease (very different to the ECG girl).

She put a large piece of gauze on the area and dressed it and sent me home. She told me to wrap it in cling film if I wanted a shower the next morning, which of course I did.

I think I’ll be investing in a proper waterproof cover otherwise my cling film bills are going to go through the roof!

So that’s the preparation done.

I have the tools to administer the chemo and a heart that can take it.

All I have to do now is turn up and let them fill me with poison.

Once you have decided to have chemotherapy (if you can get past the humungous list of possible side effects) then there are couple of things that need to happen. Firstly, you must go and have an ECG to check that your heart is strong enough to take it. Some chemo drugs can damage your heart by weakening the heart muscle so it’s crucial to check your heart is ‘good to go’.

I went for my ECG 5 days after seeing the oncologist and it was an interesting experience to say the least. I had gone presuming it was just a tick box experience and felt pretty confident about the results. By the time I came out of the appointment I was questioning whether everything was normal but I think that was more to do with the clinician I saw. She was a youngish girl who had a very serious disposition. She asked me to take off my clothes to the waist and lie on my left side on the bed. This was the first time I had to get my scarred breasts out for a relative stranger (outside of the breast cancer care unit) so I had to take a deep breath before doing it.

Once I was on the bed, she asked me to lie on the very edge so I was a close to the machine (and her) as possible. Quite frankly my swinging breasts were virtually on her knee! She then used a probe to go all the way around my left breast (a little bit like a scan you have when you’re pregnant). All of this was fine, what was disconcerting was the faces she was pulling whilst she was looking at the images! She did a lot of frowning and squinting – I thought she either needed her eyes testing or she had seen something most unusual.

She then put the probe on my neck and just at the bottom of my cleavage. I asked her what she was looking at from that position and she simply answered ‘it’s just a different view of the heart’ – that’s me told! She didn’t really chat to me at all so at the end when she’d finished, I got dressed and said to her ‘so does everything look normal to you’ to which she replied ‘I can’t tell you because the report isn’t finished yet’. I understand they can’t get into detailed conversations there and then with patients, but it did leave me feeling a little uneasy.

As it happens it was fine, so I needn’t have worried – it was probably a sign of me being on high alert for any medical surprises (let’s face it I’ve had a few).

Secondly, you have to decide how you are going to have your chemotherapy administered. You have a few different choices, you can have a cannula put into your vein each time you go, you can have a PICC line which is a very thin tube that is inserted into your vein and stays there until your chemo is over. The third option (that I know of anyway) is called a port. This sits just under your skin permanently and needs to be inserted with a small surgical procedure.

I think the majority of people probably choose a PICC line as it saves you having a cannula every time and it also saves the chemo travelling through the veins in your arms to the one near your heart where it gets quickly dispersed around your body. I think people choose ports if their veins aren’t very good in their arms or they play sports that require their arms to go over their heads or move a lot.

My initial thought was that I would like a port, the main reason being that because I have had both sets of lymph nodes removed from my arms, I don’t have what they call ‘a good arm left to use’. People who have had breast cancer on one side (97-99% of cases) would only possibly have their lymph nodes removed from one side too leaving them a totally health arm.

It is thought that putting lines into an arm with no lymph nodes may contribute to a condition call Lymphedema which can happen years after surgery and which I am desperately trying to avoid. It’s where your arms swell and you then need to wear compression sleeves – not something I want to be contending with when this shitty journey is over.

Anyway, to cut a long story short, the oncologist said I could discuss all options with the chemo nurses when I saw them. The problem was that by the time my appointment with the nurses had come through they immediately told me I didn’t have time to have a port surgically inserted in Coventry if I wanted to start my chemo on the planned date of 6th December.

If I’m honest this sent me into a real spin because I didn’t really want a PICC line in my arm and was then left with the Hobson’s choice of risking a PICC line or delaying my start to have a port fitted – neither of which I wanted.

This really upset me and if I’m honest I felt a little like no one had even thought about, or understood, the possible risk to my arms. Bilateral breast cancer is so rare that I am starting to realise that if I want my arms looking after I am going to have to advocate for that myself, but if I’m honest I don’t really know what’s best either. I haven’t seen a lymphatic consultant to advise me on the best way to look after my arms as I navigate my way through all of these medical procedures so I’m only going off the little I can research. This whole issue sparked a big debate within the oncology unit, but it didn’t change the outcome for me – there wasn’t time for a port before 6th December.

My choices were:

1) Have a PICC line inserted and hope that it doesn’t get infected and cause problems to my arms

2) Have my first lot of chemo through a cannula straight into my veins and get booked in for a port for sessions 2-6

I didn’t want the chemo to go up through the veins in my arms as apparently it is very corrosive stuff and can cause damage to the veins and tissue, so this didn’t feel like an option.

I opted to have a PICC line inserted after much deliberation and many tears.

Understandably, the nurses won’t make decisions for you or even give their opinions and I totally appreciate that it’s not worth the risk for them. However, I’m finding it really difficult to make important decisions about my health when I feel ill informed, but it just has to be done.

So, I’ve opted to have a PICC line to be inserted and I am just keeping my fingers crossed that it doesn’t get infected and cause problems down the line with my arms!

So, on Wednesday (20th) I visited the oncologist for the first time.

I did feel nervous about this appointment as I thought she might talk to me about statistics and reoccurrence of the cancer and I thought it might be one of those appointments where everything feels depressing.

It wasn’t as bad as I’d imagined although it didn’t get off to a great start.

My appointment was 9.40 and it was a working day for me, so I was dressed for a meeting at our head office which I was heading to straight after. It was my first time in the Aylesford Unit (which is where they do the chemo) and as always, the reception staff were lovely and the unit itself was very clean and pleasant (I think it’s recently had a facelift) so that wasn’t the problem.

The problem was the patients that were in there.

Of the first 6 patients I saw, one was in a wheelchair and the 3 of them had walking sticks, most of them were old and almost all of them weren’t a picture of health. I felt too young and too well to be in there and immediately worried that the treatment was going to do the same to me.

The oncologist was running late so I had my height and weight checked and sat in the waiting room with Dave until we were called. I can’t really explain why but I felt quite emotional and teary sat there waiting to be seen, I think because this was the next stage of the journey and probably the most unpleasant stage.

I was called into the oncologist’s office and once I’d sat down, she said to me straight away and with compassion ‘you’ve had a bumpy ride so far haven’t you?’ to which I burst into tears. I hadn’t anticipated crying quite so early in the consultation, but I think the emotion that had built up outside just spilled out. I soon gathered myself together so we could carry on and she asked me a few questions about how I’d spotted the cancer and how I’d been feeling before diagnosis. She also checked my boobs (I generally get them out at most appointments now), listened to my chest and felt my stomach. All seemed fine and she was very pleased with how I’d healed.

She went on to tell me that I would be having 6 sessions of chemo in total, 3 of one type and 3 of another – she didn’t go into huge detail about the side effects as they hand you a leaflet with them all written on that you can take home and digest – makes for lovely bed time reading!

We talked about the BRCA testing and the implications of the result and she said that she would take the blood for the test today and send it straight off – results will be back in 4-6 weeks. She seemed to think it was unlikely (given my family history) that the test will come back positive – boy do I hope she’s right.

A negative result means I will just have another small op after my chemo to clear margins on my 3rd tumour.

A positive result means a double mastectomy and an oophorectomy – major surgery and more drains.

She agreed to call me as soon as she has the results in her hand.

We agreed a start date of 6th December for my chemo to begin, but before that can happen I need to have an ECG to check my heart is fit and healthy enough to stand the treatment. I also need to meet the chemo nurses so they can go through the finer details with me and discuss whether I have a PICC line or a port fitted. As I have no lymph nodes in either arm, I don’t technically have a good arm to administer the chemo through, so I need to discuss the options available to me.

The meeting hadn’t been as horrendous as I had expected which was good, although reading the side effects of the chemo drugs later that night didn’t fill me with joy.

This is the second stage of the journey, probably the longest and I’m imagining the worst stage, but as always there are some positives.

If I start on the 6th December I should be pretty well for Christmas week which is important to me because of the boys.

I’m only having 6 sessions and not 8 which is a bonus.

I can only find 2 positives, but it’s a start.

It’s strange because I’ve had 2, maybe 3 people tell me how well I look this week – which is lovely but sadly I feel it may be short lived.

I have 2 weeks before chemo starts. I’m ready to get started because the sooner it starts the sooner it is over, but I’m scared of what it’s going to do to my body.

I know it will kill any remaining cancer cells and give me the best shot at it not returning, but the question is – at what cost?

I guess only time will tell.

Tuesday 12th November

Yesterday was just under 2 weeks since I had my second operation.

I feel as though I have recovered from this one really well, I stopped my pain killers pretty quickly, the wound has healed well and swelling seems to have gone down (pleased to report it is no longer square shaped!). I have been struck with a nasty cold and cough but I think that’s more to do with the time of year, and the bugs going around, than anything to do with recovery.

I have already been into the unit once since the operation to have my dressings removed and my wound checked. So, I have already seen my left breast without it’s nipple. No great surprise there, it now looks just like the right one – there’s something to be said for symmetry.

It’s strange how being on a journey like this (where something is threatening your life) how quickly you can adapt to losing a part of you permanently. I think you just see it as collateral damage in a bigger battle you are determined to win and as a result you don’t mourn it’s loss.

So, as per before, I received an appointment to go and see the surgeon and get my pathology results. Dave was abroad so a good friend of mine accompanied me for moral support and as another pair of ears to take in any imparted information.

I wasn’t particularly concerned about this appointment to be honest. All I was waiting for was confirmation that the surgeon had achieved clear margins on the 3rd and final tumour and the Her2 results from one of the other tumours previously removed (this had just been missed first time around).

What I should have known by now is that I can’t afford to ‘expect the norm’ on this unpredictable journey.

It turns out she didn’t get the clear margins she was hoping for.

This means there are still cancer cells in my left breast (despite 2 operations) and I still need to have another procedure she referred to as a ‘shave’. (If only she was referring to my top lip!)

This was a blow. I really wanted to avoid more surgery if possible but it seems I can’t.

She recommended that they don’t do the operation now as this will just delay my chemotherapy. Instead I am going to have my 6 or 8 rounds of chemo during which they will do the BRCA gene testing. I will get the results of that test within 8 weeks. If I am BRCA positive they will be recommending a double mastectomy at the end of the chemo anyway which will negate the need for the ‘shave’. If I am BRCA negative (fingers crossed I am) she will do the procedure then and before I start radiotherapy.

I asked her if there was any risk involved in the leaving the cancer cells there. She said not as the chemotherapy may well clear them anyway and even if it doesn’t they will be doing the ‘shave’ at the end.

We discussed the BRCA testing a little further. It seems that under ordinary circumstances the results take 6 months to come through – it is very specialised testing and she thought there was only 1 lab that does it. Apparently because I have bilateral breast cancer (in both boobs) I fall into a category of people that can get their results fast tracked to 8 weeks. Whilst this is good news for me, it’s also slightly alarming as it suggests a sense of urgency in finding out.

This got me thinking that if I happen to be BRCA positive then how do I know I am not sat here with both breast cancer and ovarian cancer? (This is the other thing the BRCA gene can cause). My surgeon had never been asked that question before and stumbled slightly over the response. She assured me that the risks of ovarian cancer with the BRCA gene are lower than the risks of breast cancer but did encourage me to talk to the oncologist about this next week.

I asked whether it was worth me having a scan/blood test for ovarian cancer and whilst she didn’t rule this out, she said also pointed out that if I go down that road and they find anything at all that is not ‘normal’ (ie a small cyst which may not be malignant) they are obliged to check it out and again something like this could delay my chemotherapy treatment.

We did not really reach a conclusion on this train of thought, I think I need to pick it up again with the oncologist next week.

The slight problem for a patient like me is that each division of the NHS is extremely specialised and brilliant at what they do, but on this kind of journey you cross divisions.

My surgeon is fantastic as looking at a diagnosis and deciding how best to remove the cancer. You then move to the oncologist who is undoubtedly an expert at eradicating any remaining cancer cells and trying to stop it coming back.

The problem is when you have something like the BRCA gene testing lying over the top of both of those things, neither division is an expert in that area so suddenly you have questions that possibly no-one has come across before. The experts on gene testing are in Birmingham but I’m sure they are not experts in treating cancer and I don’t have the luxury of time to see them.

It’s difficult to get a holistic approach. The individuals in each area are fantastic but the very fact you are moving from one department to the other means there is nobody to totally oversee your case from start to finish. I understand why this can’t happen but it does leave you having to make a few decisions for yourself. Do I push for a test for Ovarian cancer just to put my mind at rest or do I ignore the fact there’s a slim chance I might have that too and just press on with treatment for the cancer I do know I have?

The answer is I don’t know.

I’m hoping a few blanks might be filled in by the oncologist next Wednesday.

In the meantime, I’m back at work so I don’t have time to dwell on this question for too long. (It’s a deliberate strategy)

I have sales people to go out with, recruitment to do and targets to hit.

I can’t tell you how nice it is to just think about that, at least until the oncologist gives me another raft of information to process next week.