Hello everyone, it’s been ages since I’ve been on here and it’s great to see all the new people and how everyone’s keeping up the chat. It’s a long haul in treatment for we Her2+ve folk and I don’t know how others feel but especially with hair, brows etc growing back, work, family and friends’ enthusiasm for enquiring after my wellbeing etc has definitely wained massively!
632 entries and still going strong! @salbert you definitely hit on a good topic and catch thread title. Is there a Forum record for the longest thread I wonder? Are you anywhere near it?
Anyway, on my journey, I‘m gearing up for this coming Friday being my final (18/18) Phesgo injection! At times I thought I’d never make it but here I am. I will miss the hospital team on the oncology outpatient ward. I’ve literally visited every 3 weeks since 15th July 2023. What I won’t be sorry to see the back of is the diarrhoea, it’s got cumulatively worse - more episodes on more days and less predictable about when in the cycle. Yes Imodium (loperamide) is great, but it really only acts like a bung and when the effect wears off, the cork pops and off I go again! I’ve talked to the BCNs etc but there’s little else anyone can do. Anyway, hopefully, like all the other stages of treatment it will soon be in the past.
By way of encouragement for those in the early stages of their journey. My tumour was found on routine mammogram. I didn’t find it. I just know that it wasn’t there 3 years previously and now it was and had spread to my lymph nodes. You can imagine how keen I was to get on with treatment and convinced I was riddled with cancer. But diagnosed on 26th May 23, I didn’t start any treatment until 15th July. Hindsight’s a wonderful thing and I now understand it’s the right thing to have all the tests and scans etc so that the best treatment plan for everybody’s individual situation is drawn up. I had to appreciate that if it’s taken up to 3 yrs to diagnose, a few extra weeks wasn’t going to make a mahusive difference. So I guess my message is like that of others, the wait is worrying, but things really do pick up and get better.
Then there’s letrozole. Oh my gosh, that’s taking some getting used to and definitely affected how I am, feel, ache, bend… the list goes on. But everyday I tell myself it’s helping me stay cancer free and I pop another one, hoping I can swim, walk, garden and generally plough through the SE’s.
Then again, like others have expressed it’s still not totally the end. There are a few more heart scans (one with the radioactive substance, then switch to ‘echos’), blood tests - my liver function is still not normal. The oncologist isn’t worried and my reading up suggests this too is a Phesgo effect, but my GP won’t have it and is putting me through their patient pathway as though I am an alcoholic!!! And I’m on the 6-monthly zolendronic acid infusions for another 5 doses. December will be one year after surgery mammogram. The car park at St James can look forward to seeing me plenty yet!
@salbert it’s been great to read about your successful surgery and I loved your poem.
Take care one and all. I’m still around and so grateful for you guys all still being here plus all the newer faces.
