Side Effects

I’m two years post surgery but am still having issues and had another CT scan today and am to have another MRI on Tuesday.

I find sleeping difficult and although it’s mainly because I can no longer lie on my stomach it’s also because I get a dizzy sensation especially when I turn over. I can only assume it’s nerve pain but it’s really disconcerting. I feel it in my head not my pelvic area. I’ve mentioned it at every check up but have never had a satisfactory explanation.

Your body has certainly gone through the mill. I hope you get some relief

x

Hi Galanthophile , sorry to hear you're still having issues so long afterwards. When you mentioned dizziness it reminded me of when I was diagnosed with positional vertigo. This affected me when I turned over in bed and is caused by crystals in the inner ear. My physio cured it using the Epley Manoeuvre - took only a couple of sessions. Don't know whether this is helpful or not but thought it worth mentioning as it's very common.

Take care, stay safe

Dx

Hello Shorty,

Welcome back to the forum, and sorry to hear you've been experiencing low energy levels. I'm a relative newcomer to this wonderful group of supportive women, having had a diagnosis late September and total hysterectomy a month later. I've not had chemo or external radiotherapy, and only recently completed three sessions of brachytherapy, so hopefully others who know more about the side effects of these will respond to your post soon.

You mentioned a funny sensation all over your body. I wondered whether this might be a menopausal symptom arising from changes in hormone levels (forgive me, I don't know whether you were already post-menopause at the time of your hysterectomy). When I was going through my menopause a dozen years ago, I often had a sensation of something crawling across/stroking my face, (cheeks mainly) neck, and upper chest.My symptoms did eventually disappear of their own accord. I never had hot flushes then - they arrived ten years later! All I could find when I researched at the time was something called menopausal formication: might be worth asking your GP about this? Perhaps have your hormone levels checked?

I do hope you manage to find a solution, or that the sensations diminish so you can get a decent night's sleep. Nothing more miserable than being tired and fatigued. Take care of yourself.

Thinking of you,
Dx

Thank you for your response Galanthophile.

Sorry to hear that you are still having issues. Hope your MRI went ok.

And sorry to hear that you too are experiencing difficulty sleeping.

When I spoke with my Oncologist last month (who was a different one from the one I previously had appointments with), upon explaining my side effects to him- he had advised that it would take approximately 18 months for these side effects to go. I think its due to how much treatment my body has been through (like what you said- my body having been through the mill)

This was the first time I have had a straight answer to my querying these side effects. So now I have adjusted my mindset knowing this information - but it doesn't make things like sleeping any better. But I guess at least I have some kind of time frame.

Thanks again.

[Pressed flagged button when trying to edit my post]

Hi Shorty,

I know how long it takes to get over radiotherapy and chemo. My husband had an operation for throat cancer, followed by radiotherapy for 7 weeks. A year later it was obvious he was not recovering like he should. They decided his larynx had been too badly damaged by the radiotherapy, and they took that out. The operation was bad enough, but there then followed months of healing up. He didn't talk for 4 months until his muscles knit together again, but the worst thing was his neck not healing. He had two holes where food found its way through, and I quite despaired about the whole thing. They said he had poor healing due to the radiotherapy he'd had, and it took another 18 months for the neck to finally heal up.

I'd say from radiotherapy to healing up took about 3 years. Also, during that time his neck went from being red raw and rock hard, to normal. And he didn't have chemo to get over, either. His sleeping was erratic, but he just slept during the day whenever he wanted, and would often sleep in a chair at night.

With him, it was easy to see what was going on, but if the radiotherapy is inside the body you can't tell what is happening. I think your body needs more time to recover. Its had a battering. xxxxx

Hi Dreamweaver, 

Thank you for your post.

How are you?

Thank you for the information regarding menopause. The menopause I have already had but I finally managed to get a straight answer from one of my other Oncologists last month. Upon explaining my side effects to him, he advised that it would take approximately 18 months for these to go. Although I haven't been advised of what actually causes them, I think its due to how much treatment my body has been through. 

So I guess I have a time frame in my mind. But they still keep me up at night.

Hope you are keeping well.

Hi . I often feel guilty as I sailed throughout this whole journey with so few problems. I had just one day on the loo the week after my second brachytherapy session and nothing since. I suppose it's our bodies reactions to being rummaged around in and poked about. It's all pretty major stuff and you had a lot of adjuvant treatment.

I haven't slept well for years, normally average 4 hours a night (interrupted) but steered away from sleeping tablets. Someone said camomile tea helps and a few drops of lavender essence on the pillow.

If you haven't done already you could ask a nurse on the Ask the expert pages but you'll need to allow a couple of days before they reply.

Sending you big hugs, Barb x 

Hi NannyAnny,

Thank you for your post.

I am so sorry to hear about your husbands experience. That must have been a stressful time for you and your husband. How is he doing now?

Yes I understand what you mean in terms of being unable to tell what is happening.  You are right, my body has been through a battering. Hopefully one day I will fully heal.

Thank you again xxx

Hi MrsBJH,

Thank you for your post.

That is good you didnt have problems after the treatment  Its like you say, its our bodies reaction to such major treatment.

Sorry to hear that you haven't sleep well for years I am quite similar with the length of hours I sleep- I average out as 4-5 hours a night. I also have tinnitus as well which doesn't help. I must try camomile tea and give lavender ago again.

Thanks for the info on asking one of the nurses.

Thanks again.

Hugs xxx

Hi Shorty,

I don't think my husbands experience was unique, having spoken to other people in a support group we attend (before Covid). In fact he is better off than a lot of others in a similar position. It all happened 14 years ago now. It was stressful at the time, but we gradually got over it all. When it came to my turn with cancer I was half prepared for what might happen, but got away lightly with just an operation.

I do remember him being very, very tired after the radiotherapy, but maybe that's because his eating was affected. Are you eating well? I had to make sure his meals were full of calories, as his body needed a lot of energy to repair itself. I added cream, cheese, full fat things wherever I could. I expect you might know all this having had chemo.

I also remember his speech therapist telling us 'Never underestimate the power of radiotherapy'. She was so right!!!

My daughter had chemo for breast cancer, and was very poorly during having it, but I can't honestly say how long it took her to get over it. She said her radiotherapy was 'a walk in the park' compared to chemo!!!!  

I still think you have a lot to get over. xxxxx