Wee Update

It’s been a few weeks since I last wrote anything down about my ‘adventure.’

As you recall I was awaiting to hear if I needed chemotherapy, my left arm (non-operative side) was not working very well and I was waiting in ‘transition 1’ to get ready for the next stage of this blooming race.

Three weeks on and I have finally found out that chemotherapy would not likely be a beneficial thing in my case. Basically the lump they removed was sent to America to get analysed by some smart people who look at genomic types of tumours. The test itself was called the Oncodx score. It tests the tumour for 21 different genes and their activity and gives it a score based on how likely it is to behave and respond to treatment. If you fall within the low risk score then chemotherapy is not likely to give any additional benefit and actually could cause more harm with its side effects. The two long-term side effects I was most afraid of were the 1% risk of future leukaemia/lymphoma and the 1% risk of developing heart failure. It took two weeks to come back and give us a result but thankfully (I think) I have fallen into the low risk group.

This news is really really good, however I had fully prepared myself for chemotherapy. It’s a very strange feeling to get told that you don’t need chemotherapy and that radiotherapy and hormonal therapy for the next 5-10years will be the treatment. Why is it strange? This will be hard to put into words – it’s because you want to celebrate but you feel like you cannot because you’re afraid. You’re afraid not to throw the kitchen sink at the bugger. You’re worried that the ability to throw said sink has been taken away from you. Most of all you’re worried that nothing is absolute and that no matter what you do this thing might come back sometime in the future. Also, I have a bit of guilt – I feel guilty about all my fellow ‘can-athletes’ (see what I did there) who did need chemotherapy.

But…there has been little cause for celebration during this whole affair and we thought it important that we do, and allow that small rim of light to appear on the horizon.

Where’s my left arm at? Well it’s still hiding somewhere in nerve impingement land. Left triceps is weak and my index finger is numb. Frustrating is not even a strong enough word for it. There’s any number of things it could be. Could be a herniated cervical disc, but if it is I’m just going to manage it conservatively for now. Physio, strengthening and getting on with things is how I’m going to deal with that one. My posture is awful, rounded shoulders, head forward and anxiety have all had a part to play. I will get there – I’m taking back control though, that’s the main thing.

Jeez, it sounds like I’ve moaned slightly throughout this post. Therefore in more good news… I was preparing to cancel a holiday to Lanzarote because I had been warned by oncologist that if I needed chemo, I needed it as soon as possible – therefore bye bye Lanzarote. However, at yesterday’s appointment I was told – no chemo therefore go on holiday!! Another minor (major, more like) celebration. This is what we so need. We had grieved for it already and had contacted the insurance company in advance but…I’m absolutely over the moon about this one. ๐Ÿ™‚

So triathlon analogy – onto the bike now (Tamoxifen for 5-10years), a bit of a transition in Lanza and then some radiotherapy to finish off the whole thing.

Not sure the ironman analogy is standing up to this but…I’ll leave it there.

Taking back control guys. #futc #gotthis

T1 and waiting…

So…l had my review appointment after surgery today.
Good news is that all of the nasty tumour is out with clear margins and it doesn’t look like it’s spread to the lymph nodes.
I am very happy about this.
However it was a nasty wee bugger of the fast dividing type and this might mean that I need chemotherapy as well as radiotherapy but…that is yet to be decided. (Meeting with the lovely oncology team next week.)
Some of you may have noticed that I’m treating this sort of like an ironman.
The surgery can be thought of as the ‘swim’ – something I wasn’t worried about and am quite happy going through because it had to come first.
I’m now in Transition 1, have managed to get my gear on and ready for the cycle but I’m just waiting to hear what route I have to take. I’m fairly positive I’m able for it though. ๐Ÿ™‚

On the actual exercise front I have been itching to get back into a bit of training.
Wounds have healed and some gentle swimming will probably be ok, but I still plan to get down and help out at our club sessions now that I can drive again!
Cycling has been scuppered by the worst crick in the neck I have ever had…ever. It’s so blooming bad that I have numbness in my index finger and my triceps on my left won’t blooming fire properly.
It’s stress/anxiety that have contributed to this, as well as over-compensation on my left. I wasn’t allowed to really do stuff with my right arm (surgery side) for two weeks. Poor leftie has taken the brunt of it. Hopefully it will pass but it’s a royal pain in the…ahem. It’s probably also happened because I’ve been doing next to no exercise and my body is pissed off at me for being so lazy. Anyway GP wasn’t too concerned and prescribed drugs and muscle relaxants and i’m seeing the physio on monday so fingers crossed it will get better soon.

Just want to take this opportunity again to say thanks so much to everyone who has been in touch, sent kind thoughts and positive vibes my way. (Also thanks for all the flowers and gifts, way too much you rascals!)
Honestly, it has given me so much faith in humanity and in the kindness of human beans (yes I did mean beans.) You are all total rockstars and have lifted me massively through this whole endeavour. (Have just had an image of me having an epic crowd-surf at a concert. That’s what it feels like so thank you.)

“D3 Post-op WLE & SNB”

So, my title means I’m a patient day 3 post-operative for an excision of my breast tumour and some lymph nodes in my armpit.

Things haven’t been going too bad at all. I would have written something on D0 if I had got anywhere near my laptop.

It’s probably better I didn’t though as I think I was still high for the first 24 hours after anaesthetic. I doubt I was still high from the drugs (although it’s quite possible), it was more likely a combination of relief, drugs and happiness that the first stage of the journey has been crossed. The days following I had the inevitable come down, the tiredness and the slightly emotional aspect of coming through this stage. ย (Translation: More tears.)

There are niggling doubts and a bit of realism about it all too. I know that the tumour will be looked at extensively under microscopes as will the lymph nodes they’ve removed, and in a little less than two weeks I will return to find out definitively what I’m up against next. The original plan was radiotherapy, if they find what they expected to find. That could change however if the tumour reveals itself to be bigger or that it has shown spread to the lymph nodes. We can only wait and see.

Pain wise – well I’m coping grand. I’m managing with paracetamol taken regularly about three times a day. The armpit is probably the sorest wound of the two but it’s manageable. I’m being very particular about doing my exercises that I’ve been prescribed to keep full range of movement and try to prevent lymphoedema.

I’m also trying to hold myself back but sometimes I’m doing more than I should and getting told off in the process.

R is working from home the next two days to “keep an eye on me”. She has just told me off for asking if I could even just walk the dogs. (You can go a bit stir crazy)

I do realise now that allowing two 7-10kg dogs haul me down the road might be a little difficult, especially when one of them does their business and I have to hold them with one arm and pick up the business with the other. Compromise – we will both go out later for a walk. ๐Ÿ™‚

So all in all I’ve survived.

We keep thinking how crazy the last four weeks have been and how crazy the next four months (and beyond) are likely to get but we are still here, surviving and thriving.

FUTC.

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Other things…

As D-day (surgery) draws nearer I’ve been thinking about my recovery and other things.

R reminded me yesterday that I could write about other things on my blog. (She doesn’t read it, I think she’s afraid to look just yet.)

By other things she means, my swimming, cycling and running endeavours as well as my mission to make my environment as healthy as possible. I’ve become quite interested in health promoting behaviour over the last few months, even before my cancer diagnosis.

A large part of my life has been devoted to exercise. I swam competitively as a child from the age of 6 years until I was nearly 23 years of age and then took up some masters swimming and dabbled in multi-sport for several years. When I finally became a consultant after training as a junior doctor for almost 12 years I started looking at participating in triathlon properly again, namely distance triathlons. Therefore for the best part of the last two years I’ve been fully immersing myself in the triathlon game and have participated in several sprints, olympics, half ironman distances and the ultimate Ironman goal was accomplished in May 2017. Ironman Lanzarote. I’m so glad I bit the bullet and went for it last year.

Ironman Copenhagen was to happen this year in August but I don’t think it’s to be this year. Not until I know what I’m fully dealing with here. Good news though – I can defer until 2019!

One of my big concerns regarding what I’m up against next is my method in returning to fitness.

Swimming

I am currently swimming like a shark, the fastest I think I have ever swum in my adult life. I’m knocking out 1:20/100m in my endurance sets, it feels like ironman pace to me. If I could continue that kind of conditioning then I would be doing the ironman swim in 52 minutes!

It feels slightly frustrating, like rubbing salt in my wounds, but it also means that perhaps being at this level will mean I won’t fall so hard after a few weeks of not being allowed to swim.

Also it makes me think I would like to do open water swimming seriously, really give it a try and see where it takes me. These are things that are fuelling my desire to get back at it and recover well. All positives.

Biking and Running

Just as I was anticipating seeing the end of the endless indoor turbo training for a few months and getting ready to enjoy the great outdoors on the bike – I’ve been cruelly brought back down to earth.

On the positive – my turbo is going to be my saviour after my operation and during radiotherapy.

Although I’ve bought appropriate sports bras for after my operation I doubt that I will be able to run aggressively and put any pressure on the wound for the first few weeks anyway. I plan to get back on that turbo and make the legs go. I don’t have to do anything with my upper body apart from exercises to prevent lymphedema (that is persistent swelling in the arm after the lymphatic chain has been disrupted by removal of lymph nodes in the armpit.) The turbo it is then.

That is until I give myself the clear to start to run and cycle outside.

When I say ‘I give myself the all clear’ I mean it. I’ve researched this – ย and there’s nowt on the internet about how to get an athlete back safely to exercise after breast cancer surgery. I’m my n=1 on this one.

So, when I decide to talk about ‘other things’ this is mostly what I will be talking about. My journey back to health and fitness, but not just any type of health and fitness – Ironwoman fitness! ๐Ÿ˜‰

PS I do plan to write about health promotion too but just thought I’d leave it there for today.

 

 

 

Roller coaster…

It has been an incredible Roller coaster over the last three weeks.

To be honest, it’s a roller coaster I would have never chosen to get on but I guess you don’t get that choice when you have cancer. It just happens.

I have surgery scheduled next week for a ‘lumpectomy’ and sentinel node biopsy.

The ‘lump’ and lymph nodes taken from my armpit will be sent to the pathology lab and examined by the pathologists who will determine whether the peripheries/margins of the lump and the lymph nodes are free of cancer. If they are? – well that will give the go ahead for radiotherapy after the wounds have healed.

If they’re not?…

Well that’s back to the drawing board regarding further management, but will probably mean more surgery (likely mastectomy) and possibly chemotherapy as well.

I’m in a position of knowledge because I have a background in medicine. That’s a good thing sometimes and a not so good thing at other times. What I can say is,ย it’s a real eye-opener being on the other side of the fence. Patient vs Doctor.

I continue to be depressed, defiant, afraid, angry and numbed by it all.

I have read a few other peoples accounts of their own battles via online blogs and they’ve inspired me and scared me in equal amounts.

The conclusion I’ve come to regarding other people’s stories are – they are helpful to a degree but I need to remind myself that we are all different and our cancers are all different. Their story won’t necessarily turn out to be the same as my story despite the similarities.

Today, I really cried.

Don’t get me wrong there have been many tears over the past few weeks but today I really cried for myself.

R was there, she was beautiful and supportive and strong as she always is. She held me and my heart. I worry for her, because our lives have become all about this thing, this uncontrollable thing that we are trying to control.

I cried today for the me I used to be. It feels like that person is going, going and will be gone soon – forever. (I don’t mean death – that’s way too final to be talking about that yet.)

What I mean is – the me who raced triathlons, the me who loved the way exercise made her feel, the me who enjoyed some of the finer things in life – indulgent food and wine! The care-free, smiley, looney-tune who was so happy with how her life was going.

I don’t feel she’s going to be the same after all of this and I’m sad about that.

But…crying is ok, writing it down is good and change is not always necessarily bad.

One quote I have lived my life by, and it is not necessarily everyone’s cup of tea but I’m making no apologies for that…

“Everything happens for a reason….”

I can’t fathom the reason at the minute but I will keep on moving forward. That’s the only choice I have.

Onwards and upwards.

 

 

Perspective…

Perspective is such an interesting phenomenon.

Collins English Dictionary define it as

“…a particular way of thinking about something, especially one that is influenced by your beliefs or experiences.”

My most recent ‘experience’ has shown me that there are a lot of things in life that don’t matter and a lot more that really, really do matter.

I’ve honestly used the word perspective about a million times since my diagnosis. (Yes I like to exaggerate to put things in perspective – lol.)

I have a date for surgery now, which is good. I will likely undergo radiotherapy after my wounds from surgery have healed. Chemotherapy is looking less likely, unless findings at surgery suggest I should get it later on.

I’m one of the lucky ones so far – the tumour still looks to be ‘early and treatable.’

It’s in there, by itself, in my breast tissue and doesn’t appear to have any friends lurking elsewhere. It’s hormone sensitive (that is – it’s sensitive to oestrogen blocking drugs) and negative for the HER2 receptor that I was talking about in one of my earlier posts. That’s a really good thing supposedly.

“I’m one of the lucky ones…”

How’s that for perspective?

Every day thousands of women are being diagnosed with breast cancer all over the world.

Every day tens of thousands of men and women are being diagnosed with some form of cancer – all over the world.

Their news might not be as hopeful as my news. Their story may be not as positive as my story. That’s the real perspective.

So…to all of you folks out there, to all of your loved ones, to all of those somehow touched by this effing fecker, Cancerย (oh and trust me I’ve said a lot worse than that word)…

Take your dominant hand (or whatever hand you want), raise it up, knuckles facing forwards, make a strong fist and then take your middle finger of that hand and stick it up to Cancer. Hell, if you feel like raising both hands up and making the same symbolic gesture – go for it. Let’s call it our personal salute to the Big C.

Now get on with it – love, hug, laugh and cry and look at perspective positively.

That’s what I’m going to do. That’s what we have go to do.

 

 

Positivity

It’s been a few days since my last post.

I’ve been given a bit more information about what is going to happen.

On a positive slant, the news I received back at the breast clinic is probably the best type. They still feel the lump is “early and treatable”.

It has a name now – ductal invasive carcinoma. It’s so far oestrogen sensitive and they were still awaiting it’s sensitivity to HER2 (human epidermal growth factor 2.) This is a positive thing – it means it will be sensitive to drugs that block oestrogen.

The FNA from the lymph node was clear – which gives me an 80% chance that it hasn’t spread (they will take some nodes away at surgery to hopefully confirm that.)

I have another more detailed mammogram to go through this week to make sure there’s nothing underlying “lumpy”. However, I’ve been consented for a wide local excision (WLE) with lymph node biopsy and hopefully will be scheduled before the end of April.

Radiotherapy will happen. That is standard after a WLE.

Chemotherapy is not yet confirmed, it depends on what they find at operation and whether I’ve a lump that is HER2 sensitive. I will find out the latter detail hopefully on Friday when the specialist nurse rings me after discussion at a multi-disciplinary meeting that happens amongst the surgical, medical and radio oncology teams.

So, there’s more clarity and a direction in which to travel.

Bit by bit I have told ‘my people’. Through this I realise how many important people I have in my life and how much I value them. The overwhelming response to the news has been

“Please if there is anything I/we can do, please ask.”

I’m overwhelmed by the out-pouring of love and support and for that I will be forever thankful.

The anxiety and fear is still there. I am numbed and shocked every day but I’m finding it easier to deal with.

I’ve decided that I am likely to defer my entry to Ironman Copenhagen this year and hopefully be fit to do it next year. If I’m not, it’s no drama but at least deferral gives me a chance to use my entry.

I am still going to train. I’m training for a different battle now. I need to get to the start line of my treatment plan in the best possible shape.

The Kale shakes have continued, the daily 1500mg Turmeric tablets, eating leafy greens at every possible meal and sugar? Sugar of any type can do one.

I’m also off other toxins like alcohol and feeling much better for it. These are the things we can control. Sometimes in a situation where you have no control it makes you feel better to control something. This is what me an R have latched on to. (I/we do have insight.)

The mantra’s I’m using are;

“You got this!”

“Positive mental attitude”

“Go Jenny, Go Jenny, Go, Go, Go!” – that’s what Mum and Dad used to shout when I was competing at swimming competitions.

There will be more, and I will share them. ๐Ÿ™‚