Another Curveball

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Hi everybody,

I could do with some gentle hugs and good wishes,

On Wednesday 6.5.26 I woke up unable to swallow and my temp was 37.4. Due to recently starting Movicol because of blockage effects of 1st chemo and after previously speaking to BCN about said blockage who suggested quickest is see GP and if necessary then contact hospital bleep holder.

Temp at GP was 38 with very low blood pressure!

I ended up contacting bleep holder and hospitalisation.

I have ulcers in mouth and throat (hence sooo painful to swallow) plus my BP was minus 0.0!

I have been on soo many IV drips, foul tasting mouth washes, I can't swallow much food and feel rubbish.

After my first chemo session (2nd is supposed to be next Saturday) I actually thought I was doing and coping sooo well but it seems I aren't

The thing is my op was successful 2 x cancers removed all lymph nodes removed with clear margins.

My chemo is supposed to be to treat "possible rogue loose seeds" and prevent further cancers.

However if it isn't known if rogue seeds are there and the chemo is preventative - the question is :- is it worth putting yourself through help for months ?

My chemo is until end September followed by added extra medications and a course of radiotherapy.

I am not sure I can handle anymore and I am usually a strong willed Yorkshire lass!!

MsC19754c 1 month ago

Hey Rusty53x

Sorry to hear you're having a rough time of it.

It's completely understandable to think about whether it's worth it given your clear results, however let me tell you what's happened to me.

I had a lumpectomy and lymph node biopsy for a 1cm TNBC tumour in December with clear results and adjuvant chemo to follow in 8-12 weeks after surgery. Unfortunately my oncology referral came through late at 18 weeks, which is well out of the time frame for maximum effectiveness and I had a local recurrence confirmed on 29th April, just four months after the surgery and larger than the original tumour. I have been told that starting the chemo earlier would have made a difference.

I had wondered whether it was even worth it before I started the chemo and did think about declining it given my clear results but my view of it has changed radically now.

You need to make the decision that is best for you but thought I would share this as, although it has no bearing on the recurrence as I started the chemo as soon as it was offered, I did massively underestimate how important it was.

Hope you're feeling better soon! x

TheresaP2e7445 1 month ago

As a 77yr old, generally positive and pragmatic, I question this all the time.Fortunately chaemo (on 3rd EC) has been OK but have been reassured that if you feel really bad most treatments can be modified/changed. In fact a poorly tolerated chaemo is unlikely to be the best for the job.

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