Parents

Hi  and welcome to the community though sorry to hear about your wife especially with your two children too.

I know exactly how easy it is to worry about the future and it is so incredibly easy to think the worst all the time - my son, now 16 is more used to seeing the inside of hospitals than I would ever have liked.

We were really lucky than one of our friends went so far above and beyond to help us in times of crisis. Many friends were "whatever you need" but then "well I cannot today". Also nursery and then school were so supportive.

Janice had some very interesting times through her treatment. She never wanted a prognosis and I found that very hard but came to realise in the end she was right - it would at best be a guess based on averages and she is so very far from an average woman - whatever that might be.

The treatment can be frightening - the list of potential side effects is enough to terrify but of course they have decreasing rates of likelihood and it is important to remember why the treatment is being recommended.

The best we can do it take things day by day or even hour by hour. Having a back-up plan is good but what we found is there will be surprises on the road - some of them bad but many of them good too.

<<hugs>>

Steve

Thank you Steve. So sorry to hear about your wife. Our lives have flipped on their heads. Her prognosis isn’t great, perhaps it is better not to know - who knows hey? 
were managing nap time to nap time at the moment. 
thank you for your reply 

HI Wantmycake oh I am so sorry to hear about your wife.

I don't have any words that can make any of this better but hopefully I can allay some of the fears about the treatment ( that's assuming its a similar 6 week radiotherapy/oral chemo regime to the one my husband completed on 20 Nov) He has a grade 4 GBM. We had a 60 mile round trip to the Beatson every  week day for 6 weeks. The travelling was almost as exhausting as the treatment. My other half is 51, a fitness freak/marathon runner and stubborn as all hell. The first 3-4 weeks were pretty much side effect free. After the first 5 days he didn't need any of the anti-sickness meds to support the TMZ chemo drug. The chemo was one pill in the morning, every morning. The radiotherapy sessions were short (about 15 mins) Most days in weeks 2-4 he travelled by public transport himself to Glasgow (despite all the warning about COVID etc etc) and walked the 3 miles from the house to the station and the 2-3 miles from the station in Glasgow to the hospital and then back again. By the end of week 4 fatigue was setting in and he was happy to accept a lift every day. For the first 3 weeks after the treatment ended, he was still quite fatigued but still managed to walk and eventually run most days. 

Not sure if that helps in any way but that was our experience. 

Take it all one step at a time. Accept any help and support you are offered and stay strong.

sending big hugs to you all

Wee Me xx