waiting for diagnosis, so scared…

[Springbunny]

My husband had very strange sensation about 2 months ago. He describes it “electric ants marching from his temple to the end of the arms” and felt nauseous. If I think back, it might have been seizures.It went away after 2 weeks, then he started suffering from daily headache. He always had migraine with aura but this headache is different.We begged GP to send him to brain scan strait away, but GP sent him to an optician and gave him Vitamin B12 injections.Finally he had a brain MRI 2 weeks ago and they found “lesion” on his right side of the brain. He was kept in hospital for 6 days (we don’t know why) put on steroid to reduce the brain swelling. During his stay, he had another MRI scan and blood test. He came back home 2 days ago, so far headaches are under control with steroid and painkillers.He had full liver transplant 10 years ago for liver cancer. They told me there is a possibility the cancer was in his brain at that time. We don’t know the diagnosis yet as we are going to see neurologist in a few days time.I wonder if it’s possible he had a secondary brain cancer from liver for 10 years. Usually liver cancer don’t travel to brain and he had brain scan before the transplant but there was nothing. I am struggling to find any information of secondary brain cancer from liver as it’s very unusual.Any advice or your experiences appreciated.P.S. he had full body CT scan and no cancer in his body.

[SJa2020]

First of all a huge virtual hug for you. At times it’s easier to have the illness yourself than see your loved one suffer with it, when you can’t control the changes or know how to help them through it. I guess the best you can do is be there as the “constant” in their life. And just listen to their worries if they are voicing these. And giving reassurance as best as possible.

I’m not a medical professional so my words may not have basis. However cancers in brain, blood, immune systems usually progress v quickly. So it seems quite rare for something to have sat there for 10 years.

Did he have Covid in last 2 years? At times it’s been seen , as even I’ve experienced, Covid has somehow spiked preexisting conditions. At times with just the symptoms without the more serious outcome & ofcourse at times more seriously.

So what I’m saying is it may just be a small bout of these symptoms & later usually after steroids it should be sorted.

You mentioned he had full body CT & nothing came up so if it was related to the original cancer in liver, it would have to be tiny & so prognosis is better? The fact that nothing showed in all these years is hopefully good as shows it’s slow.

You know the best thing to do, just wait to hear from Drs. It is no point getting worried about the unknown. And it isn’t in our control either. You have taken steps that is in your control - ie go to Drs do tests etc. And even joined this to get other views. And once you hear of it you can then see what his/your next steps will be .

And take care of yourself too. Eat rest etc as you will need the strength for both of you. As they say in flights - put your oxygen mask on 1st before trying to help others.

Take care & all the best . I’m sorry if anything above sounds pushy or bothers you - was just trying to help. TC

[Springbunny in reply to SJa2020]

Thank you for the warm reply. I have been feeling hopeless and broken over the weekend by thinking about tomorrow’s appointment. All I can do is lying on my bed and trying to breath. I spoke to several friends this afternoon and they said the same thing you said.

One of them who lost her sister recently told me I will find a way to get through this whatever it is, because I love him unconditionally and I will be able to do anything to support him even if it’s really painful for me. I hope I will get my strength back soon to do that.

I haven’t been able to eat properly for a week and I still feel very scared of everything though.

[SJa2020 in reply to Springbunny]

Is it the Neurologists appt tomorrow? All the very best. Take a deep breath, actually have a glass of water (that forces you to breathe properly). And prep up for tomorrow - what you are going to wear, his clothes , any paperwork . That will calm you down as it’s under control.

And just reassure him he must be worried. Just a hug, a squeeze of the hand what ever works for both of you.

Will be praying for you. I find that helps me. I know it’s personal but if not religious just a moment to calm yourself to just say - yes this is difficult but we will get through this. Just puts you in a positive mindset.

Huge hugs & all the v best, our prayers for you both.

[Zhaleh_TBTC Administrator]

Hello, thank you for your post, at what must understandably be a worrying time. I hope you have been able to speak to the medical team in charge of your husband's care.

You are not alone and I can see there are some lovely messages of support here.

We are here for you too, please feel able to reach out to us, if you want to talk things through, have questions, or if you just need someone to listen. You can give us a call on 0808 800 0004, Monday – Friday, 9 - 5. You can also email the team on: [e-mail]. Warmest wishes, The Support Team.

[SJa2020]

Hi @springbunny hope you are well. And bearing up with all that must be going on.

How did the appt go? I know it’s nearly 2 wks ago. Hope it’s away forward for you & of course more for your hubby/partner.

I reread the post today & funnily one point I had missed. I used to get that feeling he described as electric ants marching by. I felt similar like electric pulses going by from middle of head to front & from side to the front. V interested to know what that is.

Take care & May God cure your hubby and both of you strength & patience to go thru these days. Take care - Sarah J