Edit: I have made an edit under the ‘new diagnosis’ section of this post. Here I am discussing a condition I was only diagnosed with a few hours before writing this post. While I have had over four years to become an expert in ‘my’ cancer I am by no means an expert in this new diagnosis…in fact I know nothing about it! In coming weeks I will do research as I always do but, meanwhile please be patient. I hope I do not offend anyone with any misinformation which, I assure you, is unintentional and I will always amend the information I share as required. I am so grateful for the insight I have gained today from people living with this condition for many years. You incredible humans! Thank you!
There is mixed and detailed news in this update. Some good news, some ‘bad’. Some is about my cancer and some is about a new condition I’ve been diagnosed with.
I’m just breathing through it all, as I always do, with no panic or drama…one day at a time.
After all – I ain’t dead yet mother fuckers!
So, after months of abdominal pain and sickness through December and January and extreme weight loss, I finally started second line chemotherapy in late January (having stopped my immunotherapy trial on New Year’s Eve 2019).
My sickness stopped when I started chemotherapy but the abdominal pain continued and eating remained a struggle. Increasing abdominal swelling indicated new tumour growth or ascites (the abnormal buildup of fluid in the abdomen – also my ‘most feared nemesis’ as treatment is abdominal drains which are very painful for me due to all of the internal abdo scaring I have from multiple organ removal…)
So we scheduled an unplanned scan which I had last Friday.
My concern had not been that I had new tumour growth, however. I was concerned that I had colitis which is a known and recognised side affect of immunotherapy. This was what my instinct was telling me and, as we all know, my instinct is always bang on!
So I wasn’t surprised today to receive the results that this is the case, I do have colitis.
Not only do I have stage four cancer… I now have an auto immune disease too! Seriously!
And yet, I see this as ‘good news’. While many people diagnosed with colitis would think it’s ‘the worse news ever’ it is considerably better than the oncologist’s concern of ‘multiple bowel tumours’. Which would have potentially stopped my treatment and caused me to die considerably sooner than I’d planned or hoped for. In these situations (and all situations perhaps) it’s about your perspective!
Colitis is ‘potentially curable’ (edit*). How amazing to hear that magic word when living with ‘incurable’ cancer!
Treatment, however, is aggressive and my 2mg steroids will be increased to 50mg (the dose is calculated by hour weight…usually roughly 1mg per kg of weight)! This will be reduced slowly over a one month period. Meanwhile I’ll be buzzing with energy and roid rage but at least I’ll be eating and my pain will be reducing!
*EDIT: My colitis is caused by an autoimmune response. It was caused by 16 months of immunotherapy. Immunotherapy is a new and emerging cause of colitis as it is a relatively new drug type and cancer treatment.
When we say ‘potentially curable’ what we mean is that we hope that the aggressive steroid treatment will resolve the issue and I will have a very long (or, ideally, permanent) remission from symptoms.
In some cases there are future flare ups which need managed with similar aggressive steroid treatment.
In some, other, cases a low dose of steroids is required life long.
As ever, I will cross each bridge as I get to it…one day at a time…I never future fear! There is no point…especially when living with stage four cancer! (And now colitis!)
Meanwhile I am focusing on the pure joy that this is, at the very least, treatable and not cancer!
So that’s what’s happening in my bowel. But what about the rest of my body?
Well it was mixed news.
Let’s start with the bad and finish with the good…
My lung tumours (all in my right lung) have grown. Some quite significantly. And there are a couple of new little ones there too.
However!…because my last scan was in December and I had a huge gap before chemo starting in late January where I got very ill my team think things were actually getting worse before I started chemo and we didn’t know because I didn’t have a scan.
So, while it looks, on paper, like these tumours have grown since starting chemo they may have actually grown before chemo and shrunk since but we don’t know as I didn’t have a scan. The good thing is my cancer markers are dropping! So chemo is doing something!
Now… new news… I have a new tumour in my liver. This is the first time my liver has been involved. BUT (don’t you love a but!) it turns out that this was there in December and I wasn’t told about it (something I am considerably unhappy about!). It hasn’t grown since December and it also isn’t causing me any symptoms. So let’s not stress about it before we need to!
Now the good news…yes there is some!…the cancer in my lymph nodes has shrunk. Hurray! And the tumour by my kidney and in my lower right abdo have remained stable!
So…because my cancer markers are dropping (good sign) they are keeping me on chemo for three more doses and I will have another scan after my 6th dose (end May/start June).
I will start my high dose steroids this week and we will sort out the (literally) shitty colitis!
SOME IRONIC NEWS
After not being able to fly for two years due to a hole in my lung, this scan showed that the hole has healed and I can fly…you know, now all the planes are grounded and I’m massively immunocompromised. I can but laugh at this!… and dream of (and plan) lots of future adventures!
A PARTING THOUGHT…
I am not stressed, worried or anxious by any of this news at all.
Firstly, it showed me that my instincts remain bang on… I have said it was colitis since December and repeatedly told I don’t. I am reminded that I know my body, always.
Secondly, Colitis is curable. Isn’t that wonderful!
My lung tumours don’t cause me any symptoms.
My liver one, for some reason, isn’t causing me any anxiety (or symptoms)… so I’m trusting that.
My markers are dropping and many of my other tumours reduced in size or remained stable.
It could always be worse!
Love you all!xx