OK so we gave up waiting for the axilla wound to heal (that’s still ongoing!) and this week I started the third and final phase of my treatment – radiotherapy.

Some people do this bit first, some people just do this bit and nothing else. But for me, it feels like a nice way to finish treatment, because it should be the easiest. That means I can start getting my life back to normal while I’m having treatment!

One month to go

A week before I start having my treatment, I’m invited to meet the Radiotherapist, Dr Russell. This feels a bit weird; she’s been involved in my treatment for the past eight months and knows more about me than I do! At each stage of treatment, where a decision has been made, the team looking after me (Oncologist, Surgeon, Pathologist and Radiotherapist) have planned things collaboratively, to ensure that whatever treatment I’m given is the best thing for me at the time, in the context of what’s still to come and what’s gone before. This sounds logical, but it’s still reassuring to know that they’re all working together to get me fixed.

So I meet Dr Russell and she explains what’s going to happen during my treatment. Today I’ll be ‘prepared’ then my treatment will start about a week later. Treatment will be 21 sessions, once a day, Monday-Friday. In my usual way, I ask plenty of questions – can I work? Yes. Can I train? Yes, that’s actually recommended as it’ll give you more energy, just go easy! Cool! So what are the side effects? Tiredness, itchy skin, sensitivity, oh and a very small chance of heart failure… WHAT?! It turns out that, because my tumour was in my left boob and my heart sits directly behind it, they need to make sure they don’t zap my heart! But they’re not too worried; apparently, breathing in fills my lungs and pushes my heart back away from the area being zapped – simple! So as long as I can hold my breath for 40 seconds I’m fine! Erm, OK, if you say so…!

Dr Russell reassures me that this really is nothing to worry about, and I’m sent off to be ‘prepared’.

Boob art

Whenever I’ve mentioned radiotherapy to anyone who’s been through it, they all seem to ask if I’ve had my tattoos yet? Surely they’re not serious? Oh yes, they are! The ‘preparation’ involves a quick CT scan, then letting the nurses loose on my chest with felt tip pens, ink and a tattoo needle!

First up, they do a CT scan to get a detailed picture of the inside of my boob. Next, they lay me down on the radiotherapy machine, and line me up so that the lasers will zap me in exactly the right place. While I’m on the machine, it shines green guidelines onto me (like when you use a laser to point at a presentation screen). The nurses then draw on my chest with felt tip pens to mark where the laser grid lines are, so that when I come back next week, they can line me up in exactly the same position. Makes sense, but what if the felt tip rubs off in the shower? That’s where the tattoos come in! Where the grid lines cross, they tattoo tiny dots on my skin, so that I can always be lined up in the same place. They’re only tiny and look like freckles, but they will be permanent.

I actually find this all quite entertaining, especially when they give me a pen and ask me to keep my lines ‘topped-up’ until next week… How am I meant to do that? I can’t see half the lines, let alone draw them on myself! Luckily for me, I’m heading to London for the weekend… Once again, enter Nurse Kari…

So Kari, what did you do at the weekend? Ah not much, just drew all over my mate’s boobs in felt tip pen… as you do… We had a few attempts at it, because she kept giggling and I was ticklish! I was half expecting to see a Banksy or some crude graffiti when I looked in the mirror, but luckily Kari kept her artistic flair at bay and I was back to looking like a walking Ordnance Survey map.

Treatment begins…

Many people have asked why I chose to have treatment in the Netherlands rather than back home in the UK. Well, everyone who’s been over to help me in the past eight months has seen the facilities over here and experienced the efficiency and friendliness of the team looking after me. Clearly, I’ve never experienced cancer treatment in the UK, but based on the facilities alone, there’s just no comparison.

Unlike chemotherapy and surgery (which were both at the OLVG hospital in east Amsterdam), radiotherapy is at the Dutch Cancer Institute (AVL) in the west. I was impressed by the OLVG, as it never felt much like a hospital, and the people were all super friendly. Well the AVL is much the same.

AVL (Antoni van Leeuwenhoek) is a hospital in the Netherlands, which specializes in the diagnosis and treatment of cancer. It feels more like a shopping mall than a hospital, and the layout and facilities are just first class. The atmosphere is laid back, there’s a library, an internet café, a museum, and they even sell beer and wine in the cafeteria! They also have people walking around with trolleys offering tea and coffee to whoever is sitting around – patients, friends or family; if you want a drink, they just hand it out. It all feels very relaxed.

My own private retreat

So on Tuesday, I arrived for the first of my 21 sessions. By this point, I was relaxed and had a good idea of where I was going, and what to expect:

• Although there are multiple radiation machines, you’ll always use the same one; to ensure you are zapped in the same spot that was identified on the CT scan and where the preparation markings were made. Mine is A2.
• There’s no need to register at reception every time you come in, just scan your patient card under the bar code scanner by the door (so the nurses know you’ve arrived), then sit in the waiting area outside your machine room and they’ll call you in when they’re ready for you.
• You stay clothed from the waist down but wear a loose shirt or blouse, so you can wander through to the machine ‘covered-up’ then just slip that off before you hop onto the machine (basically, don’t wear a dress or jumpsuit – noted!)

The radiation area is one big room, with diving walls coming in from each side to divide it into an S shape. At the top is the area where the nurses sit, then there’s a corridor and on the other side is the large area where the radiation machine is. There are cameras, speakers and microphones all around the machine, so the nurses can see and hear me from their area, and can talk to me and operate the machine without being in direct contact with the radiation themselves. It all sounds very technical, and it probably is! But it doesn’t feel it when you’re in there.

On the contrary, it actually feels more like a spa! Apart from the nurses’ area with their tv screens, the rest of the area is decorated in a really modern and relaxing way – there are uplighters on the floor, script writing on the walls, images of beaches and forests, mood lighting, and sound effects like birds tweeting, waves, branches blowing in the breeze etc. And as you come in, the patients are able to select the theme for all the lighting and sound (the themes are named after locations; so far I’ve tried Australia, South America and the Seychelles?!)

I really like all this; not because it’s cool or spiritual, but because they’ve made a conscious effort to make patients feel relaxed, give them something to do, a choice they can make, rather than just feel like this is all being done to them. It’s a really nice touch and the whole experience feels, almost enjoyable?!

You expect me to talk?

So my visions of lying on a bed with lasers zapping me – as per James Bond and Goldfinger – weren’t actually that far off! I’m lying on my back with my hands above my head. There’s a rest beneath my knees (for comfort) and rests above my head to support my arms and wrists. The equipment then moves around the bed and ‘zaps’ me from specific angles.

In my case, there are four zaps – one from behind my left side (coming at my boob from under my left arm), one from directly above, and two from above my right boob (coming at it diagonally from above). Each zap lasts between 10 and 30 seconds, during which time I hold my breath.

The nurses set me up on the bed, line me up so my grid lines match up with the lasers on the machine, then they toddle off to their area around the corner and talk to me over the tanoy. They talk to me every step of the way, so I always know what’s going on:

• “OK we’re going to start, are you ready?”
• “Yep!”
• “OK here we go, ready for the first one; breath in, breathe out, breathe in, breathe out, now breathe in and hold your breath…”
• I then take a deep breath and count in my head, until I get to about 25 and they say “…5,4,3,2,1, and breath out. OK?”
• “Yep!”
• “Good, OK next one coming up…”
• The machine then moves into the second position and they talk to me again
• “OK second one coming up; you ready?”
• “Yep, hit me!”
• “OK here we go, second time; breath in, breathe out, breathe in, breathe out, now breathe in and hold your breath…”

After the four zaps are done, that’s it. The machine slides back and the nurses come back and help me up. I get dressed and they smile and say “see you tomorrow!”

It all sounds too easy…

Given the complexity of the equipment, the seriousness of the task in hand, and the journey I’ve been on to get here, it seems flippant to say this, but it’s effortless! I know I’m only four treatments in, and have another 17 to go, but so far all I’ve felt is a little bit tired. And it’s not tiredness like I felt in chemo (that was more like fatigue, energyless achiness) – this is more like I could just hit the sack and sleep a bit more.

But it’s not stopping me doing anything. On Tuesday, I went to work for ive hours before treatment; on Wednesday, I went to the gym for 30 minutes after treatment; on Thursday, I went to work for eight hours after treatment; and on Friday I went to work for six hours before treatment… So I’m working part-time, I’m doing a little bit in the gym, and I’m sleeping like a baby the rest of the time!

OK so it’s not all rosy – my limbs and joints still seize up if I sit still for more than ten minutes, but I’m hoping that will go in time, especially as I start to rebuild my strength and flexibility. My shoulders are painful (from sleeping in odd positions after surgery, and overcompensating by using my right side for everything while my left side was healing). And my feet still ache like hell from the damage of the TC chemo (they’ve said this may improve but may stay long-term). But I’m going to ask about physio to help all this and hopefully I’ll get most of this back to normal in time.

In the meantime, today and tomorrow are rest days, before treatment starts again on Monday with session 5…

#BoxyOut

So I haven’t posted anything for a while, but a few people have been asking how I’m getting on. In the past couple of weeks, it’s really been slow progress. A few things have happened, but they haven’t felt significant, so I haven’t felt the need to share. But as phase 3 of my treatment is approaching, here’s a quick update on where we are.

A lymph explosion

I had surgery five weeks ago today. For the first week, I had clear protective covers on both my boob and my axilla (armpit) wounds. After a week, these were removed by the surgeon, who felt comfortable both were healing nicely. While the boob wound has continued to do  incredibly well, the wound under my arm has been more troublesome.

The night the clear covers were removed, the axilla wound decided to erupt! A large bag of fluid which had been building beneath the surface of my skin started to weep out, stopping the wound from closing. This fluid is called “lymph” – the body generates this to carry good stuff to areas which need to repair, and take the bad stuff away in little vehicles called “nodes”. When you have a large wound there’s a lot of lymph to get rid of, and because I’d had six of my lymph nodes removed, the remaining ones were a bit overwhelmed and the lymph was finding another way to ‘escape’.

At first, the nurses gave me plasters, but the skin around my wounds was so sensitive that the plasters ripped it to shreds – very painful! So I started using absorbent pads and held them in place by wearing tight-fitting clothing. This was where the fun started!

Hyper-granulation and kinky sex tops

The wound is quite high up into my armpit and not many clothes sit that high up (bras, for instance, have thin straps which sit much further down). Those that do (such as sports bras) were often too tight for me to get into because my shoulder movement was limited (ie I couldn’t lift my arm very high as it opened up the wound) so I had to improvise and the best option I found was crazy! But it worked. Remember the delightful white underpants I was given to wear in surgery? Turn them upside down, cut out the crotch, snip some holes for arms and, hey presto; a stretchy (easy to get into), tight (to hold the pads in place), comfortable cropped top! So the nurses gave me a few of these, some being in a super-stylish mesh fabric, and I’ve spent the past few weeks wearing what look like kinky sex tops!

So I got used to wearing these and re-dressing the wound every few hours. It did start to weep less but it was still not closing properly, so at the end of week three, I went back to see a wound specialist. She suggested that my axilla was ‘hyper-granulating’ (or healing too fast – typical Nike girl!) The red tissue inside was healing faster than the skin outside, and had grown so much it was stopping the wound from closing. The solution? She just dabbed it with a drop of silver and the over-excited red stuff started to shrink back. For the next week this worked and one end of the wound has now closed up nicely, but the other end is still sticking out. So tomorrow I’m going back to see the wound specialist and am hoping she’ll just dab me in silver again and let the wound close properly.

 

Phase 3 – the final leg

Also tomorrow, I’m going to the Dutch Cancer Centre (“Antoni Van Leeuwenhoek”) to meet my Radiologist. It’s the first time I’ll have seen her since I was diagnosed back in September, and I’m hoping to get more details of what the third stage of my treatment will be like. So far, I’ve been told it’ll probably be around 10 minutes of treatment every day (Monday to Friday) for 21 sessions (so just over four weeks). Likely side effects are tiredness (not as much as chemo) and burning on my skin (like bad sunburn). If this is the case, I’m hoping I’ll be able to start working again! I know I won’t be able to work full time (as I’ll be at radiotherapy every day) and people are telling me not to try and do too much too fast (they know what I’m like!) so I’m trying to heed everyone’s advice and not get carried away! But it’s hard not to, when I’m so excited about getting back to normal! Even if it’s just a few hours a day or a few days a week; just getting back to work will be a huge milestone, and going back gradually will let me catch up on what’s happened while I’ve been off and take back the reins from the teammate who’s been covering my role.

The sting in the tail

However, there is still uncertainty over what my follow-up treatment will be.

Initially, when they thought my tumour was a triple negative, it was suggested that I’d need another 18 weeks of chemo after radiotherapy. This crushed me when they told me, as I wasn’t aware of this at the start and was really feeling like I could see the finish line.

But when they removed the tumour in surgery and had a better look at it, they realised it is slightly hormone receptive, which means preventative (follow-up) treatment could be come from taking hormone tablets for the next five years.

The Pathologist suggested that, given my age (ie I still have a few years left in me!), I should do both (arrrrggghhh!) but as my Oncologist said, it’s easy to say that from sitting behind a desk in Pathology! Ultimately it’s my decision, and if I don’t think the benefits outweigh the impact, then I don’t do it.

This could be one of the biggest decisions I’ve ever made, so in true Boxy fashion, I want to know the numbers!

 

• Me: what’s the chance of it coming back, as we stand right now?
• Oncologist: about 15% (this would’ve been higherif it’d got to my lymph nodes).

 

• Me: if we do hormone treatment, how do the odds look?
• Oncologist: about 4-5% less (so 10-11% chance of it coming back).

 

• Me: if we do more chemo, how do the odds look?
• Oncologist: again, about 4-5% less (so 10-11% chance of it coming back).

 

• Me: if we do both, do we get 8-10% risk reduction?
• Oncologist: unfortunately not, there’s some shared benefits, so it’s about 6% (so 9% chance of it coming back).

 

• Me: so doing chemo, I only get an extra 1-2% benefit over just doing hormone treatment?
• Oncologist: correct.

 

• Me: can I defer the chemo, so I can get some normality back, get fit again, and go at it strong (like I did last year)?
• Oncologist: no, the benefit of the chemo dimishes over time, so we’d need to start within two months of surgery, if we’re going to do it.

 

• Me: so if radio takes four weeks, my wounds need to heal in four weeks, so we can start chemo within two months, otherwise it’s not worth doing?
• Oncologist: correct.

 

If your heads are where mine is right now, chemo is not looking likely… If we do it, the benefit will be minimal (1-2%), I’ll be back to blood tests, fatigue, no work, and pretty-much writing off the rest of the year to cancer. And what’s to say that, by the time I finish, there won’t be another new treatment to try? And I could end up spending my life doing preventative treatment to extend my life, rather than living it!

Ultimately, it’s my decision, so unless I learn anything significant in the next few weeks, my head is currently telling me that, once radiotherapy is over, I’m done. I’m seeing the Radiologist tomorrow and seeing the Oncologist on 7^th July, so I’ll know for sure in the next few weeks. In tne meantime, I can’t do anything to influence it, so I’m making the most of every day, grabbing opportunities to travel while I can, staying positive and focusing on the finish line, which, right now, I can feel looming fast!

Final push Boxy, let’s do this!

 

PS – Although I don’t yet know the detail of radiotherapy yet, in my head I have this picture which makes me smile (like the orange Tango slapping cells did during chemo)… Remember Bond asking Goldfinger “Do you expect me to talk?”… 🙂

 

 

 

 

 

 

Warning: perhaps not the boob shots you’d typically want to see, but in the interest of honesty and completeness of the blog, I’ve decided to include photos of the boob. I have debated this for a while, but the whole idea of the blog is to help people understand what this is really like, and if I leave out the photos, I’m not giving the full picture. So I’ve decided to include them.

Early progress

In the first week after surgery, I made good progress in healing, and I took photos every day of the wounds so I could see and compare how they were healing.

There are two wounds: one on my boob (where they removed the tumour) and another in my axilla / armpit (where they removed the lymph nodes). They warned me in advance that the boob would heal better/faster than the axilla, because the latter is a trickier area to get at. They were right, and the axilla was a bit more sore, but they did a good job in surgery and neither is too gory, just lots of colours from bruising etc. But if you’re squeamish, scroll quickly as photos follow!

Unfortunately, since the elation of Wednesday’s “all clear” news, things haven’t quite gone as smoothly as I was hoping. By 2am on Thursday morning I was in A&E, and I now feel like a new mum battling with nappies and sleepless nights! So what on earth has happened in week two?

My first ride in an ambulance – slightly embarrassing

I’ve also debated whether to include this, as it is somewhat embarrassing! But given that it’s a side effect of chemo, I feel I should, for honesty’s sake.

So at about 8pm on Wednesday evening, I went to the loo. Or rather, I didn’t. Or rather, I couldn’t.

Note: during chemo, they warned me that a possible side effect was constipation, and I was prescribed Magnesium to help me ‘go’. Luckily, I didn’t have this side effect, so when I finished treatment I gave back the unused magnesium, along with my other unused meds. (Very conscious of the cost of all this, I wanted to save the health service whatever I could by returning unopened meds to the hospital. They were very grateful!) 

Unfortunately, this left me with nothing to ease the pain and it just got worse and more painful. By 2am, there was no pharmacy open and I’d already tried to sleep through it, without joy. So I called 112 (the dutch equivalent of 999), expecting them to send me a paramedic with some meds on a bicycle. But no, they sent an ambulance and wanted to bring me into A&E (as a precaution, I guess, because I’d had surgery the week before). Despite being in awful pain, I apparently asked the paramedics if they shouldn’t be helping people in accidents of something? And suggested if they could just give me a bowl of All Bran or some prunes, I’m sure I’d be fine?! But no, they insisted on taking me in. So I had my first ride in an ambulance, bent double on my side, strapped to a bed, all because I couldn’t poo. So embarrassing!

The floodgates

I won’t go into more detail on that, needless to say they sorted me out. Meanwhile, while lying on a bed in A&E, I suddenly noticed that the wound under my arm has started to weep, by the gallon. Erm, Nurse? That’s not supposed to happen, is it?

On Wednesday, I’d pointed out to my surgeon that there was a huge ‘bag’ of fluid under my skin in the wound, which was bounding around and tugging on the wound, uncomfortably. She’s said that was normal, and that it’d go in time. I thought she’d meant it would drain internally, but apparently not. Sometimes it drains out of the wound.

So they found me a surgeon to take a look, and he was happy it hadn’t become infected as the fluid was clear. So he had a good prod around it to try and get as much fluid out as possible, before slapping on a large plaster and sending me home.

Despite my mentioning it at least twice (I have a rubbish pain threshold) he chose to ignore the fact that my skin was red from the previous plaster which had been on the wound, or the fact that I’d had five months of chemo and therefore had super sensitive skin. He just slapped that plaster on and said “just use Zinc Salve for any soreness, like you do on a baby’s bottom, you’ll be fine“.

By Thursday morning, the plaster was ready to change, so I went back to hospital for my morning appointment with the nurse, and she removed the plaster, painfully again taking half my skin with it – OH MY GOD! But still the wound didn’t stop weeping. So after cleaning it up and again, having a good prod to empty the bag of fluid as much as she could, she redressed it, this time with an absorbent pad and silk tape, giving me a good supply to take home, and instructions to redress it 3 times a day.

Unfortunately, when I later removed the silk tape to redress the wound at home, it was no better than the plaster and another patch of skin came off with it. ARGHHHH!

It’s like changing a nappy, baby every few hours!

So since then, I’ve been improvising! How do you hold on a 10cm-wide absorbent pad under your armpit without using tape or plasters, while avoiding the areas where you’d typically attach tape (as these are now blistered and covered in thick, gloopy nappy rash cream) and without aggravating the wound on the boob?! I’ve tried bandages over my opposite shoulder, scarves around my chest, bikini tops, and even cut the arms and waist off my hockey base layer (as it’s tight enough to hold things in place, but too hot to wear in it’s full form). All creative ideas welcome! By this point, I’m trying all sorts!

I’m not scheduled to see the nurse again until Tuesday, so tomorrow I plan to be at hospital for 08:30 to see what they think – surely it should’ve stopped weeping by then?!

#washingclothesdaily
#changingnappiesisnofun
#sudacremgetsflippingeverywhere!
#smallproblemsinthebigpicture!
#tenderbutonthemend

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