We are almost half way through 2023. It is a year so far that has given me good news regarding my cancer – I have been NED (no evidence of disease) since January 2023 and remain so and my brain is clear and has been for 16 months. So why have I not been ecstatic or shouting it from the rooftops? These last 5 months have been tough on me both mentally and definitely physically and this is the other side of chemo.
All drugs, even your over the counter drugs have side effects. I had my first lot of chemo in 2005 when I was 34. I didn’t really suffer badly from side effects apart from losing my hair and I have been fairly lucky in that respect for all following chemos – except this one! Enhertu has been brutal. It may have got rid of my cancer for now, but sometimes you need to ask – at what price? Some of you may find that difficult to understand – I am cancer free, that’s what you want, but let me elaborate!!
I started enhertu in September 2022. I noticed over the coming months that my eye sight was deteriorating so in January 2023 I went for an eye test. My last one was in August and my eyes were healthy, and although I need lens/glasses to see, everything was good! Now 6 months later they told me I had two cataracts, one in each eye and needed surgery. I am still too young, (so they told me!) for the age related cataracts and mine had been caused by a trauma – very possibly chemo, which makes sense when you think about the timing of this new chemo. I had my first cataract op done 4 weeks ago and I am now waiting for my left eye to be done.
The list of side effects that come with your chemo guidelines can be as long as your arm! And when I hear of what some other ladies are going through I still feel pretty lucky but it’s not easy. Another ‘nasty’ side effects that enhertu can cause is ILD – interstitial lung disease which can be a serious life threatening condition. In my PET scan in April they found no cancer but there was scarring in both my lungs. As I didn’t have any symptoms it was decided to continue as normal and have another scan in 6 weeks. I had another infusion of enhertu and then I had my first cataract op. I had a week off work to recover from the op and on the Monday I noticed that I was becoming out of breath even walking to the kitchen. This got worse over the next 3 days where I couldn’t catch my breath, I couldn’t breathe deeply, I was coughing and couldn’t even turn over in bed without coughing and finding I really was struggling to breathe. So I am now on a course of steroids which have helped with my breathing, thank god, I didn’t have my next infusion and I am now waiting for my PET scan and we shall see what the results say on Wednesday. So its all very well being cancer free but if you can’t breathe that’s a whole new set of problems!! So it’s put me in full remission which is a dream come true but given me something potentially as life threatening – if not more so, instead.
Apart from these two pretty major side effects I have also had awful mouth ulcers which have meant I haven’t been able to eat. I also had no appetite so I didn’t want to eat anyway. This was great for weight loss but it was a bit of a drastic way of doing it! It also gave me constipation – I won’t elaborate here!!, I lost my hair – again, and I need 3 teeth repaired!! Oh the joy!!
So now the results are in. I am still in complete remission which is bloody fantastic news but it has confirmed that I have interstitial lung disease. So what now? In a nutshell I am not having any more chemo for the time being, I’m being referred to a respiratory specialist and my next scan in two months. I’m still on steroids. With not being on chemo it is a concern and a worry that the cancer will now return but until I see what the specialist says this is the best way forward. The girls are scared and upset, it’s as if we are in limbo, but there is no way that this is the start of the end. My gut feeling is good and I’m just too busy to go yet!! This is not me being blase but what I really feel and believe. People don’t like me talking like this but at times we do need to be realistic. In the words of Dame Deborah James (BowelBabe) ‘its a positive but realistic perspective of my situation’. There will come a time when things won’t be so good but that time is not now. It is a lot to process and I would be a liar if I didn’t say that in the back of my head I am scared but I have to believe that there is hope and it’s not my time.
My sister recently said to me that it would be wonderful to wake up one morning and be ‘normal’ but on the flip side of this I said we wake up and have another day.
And to end with my favourite and most inspiring quote by Albus Dumbledore!!
‘Happiness can be found, even in the darkest of times, if one only remembers to turn on the light’