When should I be worried?

Hello 

Hello Sunflower, 

My husband is 16mnths post diagnosis he's still on chemo,he has another MRI tomorrow.The main thing I noticed in my husband is he's personality and he's emotions or lack of.its a frontal lobe tumor but that really hasn't changed since his op.

We have always told that any return of original symptoms could be regrowth of tumour as quite often the tumor grows back in the original place.

I'm also back to school next week, I work in a supporting role.I also sneek a peek at the forum in the wee hours sometimes.

Enjoy tomorrow if you can.

Hi Sunflower thanks for checking back in. I haven't commented much recently but I check the threads regularly. My wife is at 21 months now, with her next scan in a few days. I find myself constantly checking for symptoms - it leaves me constantly on edge and I find it hard, even though she is seemingly doing very well. I find myself constantly thinking eg are these short term memory issues the same or worse than before? Is she having more headaches? etc etc. About three months ago she started to walk with a lean to one side and I got worried and we brought forward her scan, but there was no evidence of change. I'm finding this emotional side of being caregiver very tough, even though I appreciate to many many others who have real and ever-present physical challenges, these worries may seem easy problems.

Anyway, apologies for venting.  Good luck with your return to work - I hope it goes well and I hope that it works out with D. Sending love and hugs for the new term.

Hx

HI Sunflower73

lovely to hear from you.

In all honesty I don't think you stop worrying during the journey. You are constantly on high alert watching out for changes or issues. That's the price of loving the person.

I worked to the premise that if something was worrying me or more importantly distressing G then I'd call it out. We're not medical professionals. We are wives, partners, carers who were flung into this with little or no warning and no training. We're a tough group though. Every one who has found themself in this position is doing an incredible job. I personally felt if it was something that was worrying me then I would rather shout it out and it turn out to be nothing than ignore it and it turns out to be something.  Sometimes the small changes we notice are linked to the medication rather than the GBM. 

Going back to work is a dauting prospect but having a little normality/routine might actually help you cope here but be gentle with yourself. I worked full time from home up until a week before G passed. Was I fully focussed and doing a full day's work? Of course not but I was keeping on top of the urgent things and delegating what I could. 

I understand the nervousness of leaving D home alone. Could any of his friends pop in for a coffee and spend an hour with him? We eventually reached the stage with G where it wasn't safe to leave him home alone so one of us was always there. We tag teamed as best we could. Three of his friends also took him out for a coffee/dinner every Wednesday. If you've read my posts/bio, you'll know my biggest struggle was keeping G at home. He was a runner and when he couldn't run anymore he would disappear for walks. He could be gone for hours on end and with the memory and communication issues quite often couldn't tell us where he'd been. I also respected that he did need some time alone especially during the first couple of years.

Not sure if this has helped any. It is a minefield of a journey but you will navigate your way through it.

Sending you a huge virtual hug and lots of strength. Good luck going back to school.

love n hugs

Wee Me xx

Hi Sunflower,
I well remember that period going from scan to scan hoping for good news and knowing one day it wouldn't be.

For my wife we sort of just knew before what was to be her last scan that something was changing so it wasn't a huge shock when the consultant told us it had come back. Her main symptom leading up to that was dizziness and struggling with balance but I guess everyone is different depending on the location of the original tumour.

If any doubt I would speak with the nurse. The consultant may well want to pull the scan forward if they are concerned. 

Sending a hug and good luck back at school!

Chris

Hi Sunflower 

Everyone is different, and I can only comment from my own experience.

If you can get your husband's arm checked out would be good and the Dr's can decide next steps. 

My husband was at a similar point with right arm weakness and the Dr's thought to do a second operation, but then his leg started going and they left it and then on to palliative care with Avastin. 

I was working right up to the morning my husband passed away with a sudden brain haemorrhage . It all happened so fast but was working from home.

Look after yourself