In theory they got all the cancer, but now living in menopausal hell

MissusK 6 days ago

4 replies
64 subscribers
270 views

I'm about a year in with my cancer journey, from when they initially found the ovarian cyst and tested my CA125.

I'm living a wild rollercoaster ride of menopausal hell thanks to ovarian cancer. I had BSO in Sept last year, a few weeks later they confirmed stage 1c1 cancer. I went cold turkey from the HRT (combi) patch that had previously saved my life as of 2 days later. All remaining giblets were removed in Dec, and histology results were all clear at that point, no chemo required. That was the good news. I know I'm lucky they found it early, fairly small, low grade, slow-growing... and they are confident they got it all. Others are not so lucky.

Now I have to try to live after cancer. It's menopausal hell. My list of symptoms runs to a page and a half. ALL forms of oestrogen are forever banned - it was an endometrioid tumour, very receptive to oestrogen. All the helpful herbal remedies like red clover, black cohosh, sage, and the phytoestrogens like soy and flax are forever off the menu too. My body and mind are dropping to bits. Apparently I'm supposed to be grateful to be alive (I am really, I just don't feel it)... but from what I've read I could be in for 10-15 years of this hellish half life, assuming the cancer doesn't come back (they are confident it will not, but I have 5 years of monitoring). The frustrating thing is that almost all advice available online says the gold standard for menopause is oestrogen, which I'm absolutely not allowed. Ever. GP and surgeon suggest antidepressants, which just leave me living a numb existence. A distinct air of 'numb her until she shuts up and goes away.'

So what am I doing? I have loads of supplements, a very sensible (boring) Med-style diet, and am doing ladies bootcamp twice a week plus a woodland walk each week. I'm taking OTC painkillers to try to manage the aches and pains to a tolerable level. I relax with gardening and mindful knitting. The brain fog is awful. The aches and pains are grim. The mood is struggling (this one is not a surprise given everything going on). It's a case of 'thanks for saving my life... and leaving me with no quality of life.'

Anyone else had this? Did it improve? What helped? My choices now are living half a life in foggy pain, vs living half a life in numb medicated fog. Neither is attractive. All suggestions welcome, as are solidarity high fives.

Spooks 6 days ago

Huge sympathy to you! I’m in remission from ovarian cancer having had the big removal of all insides and 6 lots of chemo ending last October. I had been on HRT for years because of acute menopausal symptoms, primarily night and day sweats. I had tried to stop the HRT after ten years but the symptoms were still too dreadful. My consultant stopped the HRT immediately I saw him and frankly since I was then plunged into the chemo and ops I didn’t really notice the old side effects coming back as I was deeply into new ones.
Now all treatment has finished I have no menopausal symptoms or treatment apart from a twice-weekly vaginal pessary for dryness. So maybe time was the great healer of the menopausal symptoms. I hope it will be for you.
What I do have is post-cancer fatigue and definite slowness of memory and brain fog. That drives me mad as it seems so pathetic to spend most of my life resting. I hope it will go eventually. I am told CBT may help along with the shedload of supplements I’m currently taking.

i think a high five may be all I can offer you apart from the hope that time will sort it out for you.

but commiserations my friend!

MissusK 5 days ago in reply to Spooks

Thank you. A solidarity high five, and commiserations right back to you. The fatigue, the planning of when/where to spend my energy knowing full well that I WILL pay for it later, the fog, the missing words, the loss of concentration... Grim, isn't it?

Spooks 5 days ago in reply to MissusK

Please post if you find or hear of anything that fixes the fatigue. I spoke to a CBT woman who told me it starts with acceptance of the fatigue. But that is what I’m fighting! I just can’t accept it!
High five again! X

MissusK 5 days ago in reply to Spooks

Magnesium supplements can help a bit with fatigue. I'm taking them, but not sure if they're actually helping with that.
Counter-intuitively, exercise helps a bit too - I'm doing ladies bootcamp HIIT workouts twice a week, with every single exercise tailored to ability/fitness/injuries/post-op state - and my versions are lower impact, lower intensity, and I can stop at 30 seconds instead of 50 if necessary. I also use lighter weights and milder resistance bands. It's HARD, and NGL, I hate it (do the thing you hate least!), but other people have noticed improvements in what I can do, my posture, my energy levels, my stamina etc. The ladies are all LOVELY and supportive.
Acceptance or radical acceptance (oh yes, I've done the CBT and DBT stuff before and know which bits are helpful to me) has a place... but so does fighting it. I am not ready to accept this quite yet. To use a fine Scottish vernacular expression - acceptance can get tae... !

More from this forum

In theory they got all the cancer, but now living in menopausal hell