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. 🙂
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