Hi all
It’s been a while since I last wrote following new tumour growth for my husband in January .. too deep for surgery so he’s on his 4th round of chemotherapy - TMZ again. We get scan results on Tuesday to see if it has slowed the growth down. I have a sinking feeling it’s not going to be good news … I may be wrong but he’s been struggling with muscle weakness on his left side. He can’t raise his arm very high and hold it up. He also can’t lay on that side. We have had a few days away with our boys and he tried to do an activity with them at the Science Museum but was unable to … he was holding his left arm for some time after and said it was very painful. It frightened the boys as it was quite significant. We will let the consultant know about this on Tuesday - but I think I am right in saying this is a symptom of tumour growth? He has gone out with a friend this afternoon for a walk but when I asked him who he was going with, he couldn’t remember and had to check the text message for his name.
I am worried that these are all bad signs … he’s not on steroids only the chemotherapy and a trial drug (Savitex). I am forever a realist but also don’t allow myself to go down rabbit holes - I try to be positive and we live life like that but … and it’s a big but … I know what this journey is and have read enough to know the process. I have a bad feeling deep down in the pit of my stomach …
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Thinking of you all, I’ll introduce myself tomorrow but just wanted to say, always wait until the scan results & the consultant will make the right decisions based on that. I’m on the same journey, my husband has had numerous changes in the last few weeks including left sided weakness & personality changes… his scan is tomorrow with results on May 4th … so worrying 
try to stay positive Best wishes
HI Sunflower73
lovely to hear from you again.
Scaniexty is real. I remember it well. You pick up on every wee change and fear the worst. I'll be thinking about you on Tuesday when you get the results.
With G there was some right side weakness in his hand for a very long time before there was any significant regrowth. He would struggle with holding and co-ordinating his knife when eating dinner. His short term memory was all but gone pretty soon after his surgery as his original tumour was in the area of the brain that controls speech, language and understanding. He would frequently use the wrong word for things and forget the names of things and people but that too was way before there was significant regrowth.
As I've said before, everyone's journey is unique as each tumour is slightly different and having a similar but different impact. Its an emotional minefield travelling this path.
I'm unfamiliar with the drug you mentioned. Could these symptoms be a side effect of it?
Sending you love and light and positive energy for the scan results.
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I totally get this HW66 … when we have had clear scans before, people send us party emojis in a text and saying how great that is - and I know why they do this but all I think is, it’s ok ‘for now’ .. and we have to go through it every 12 weeks. I don’t like to sound ungrateful and understand people are being kind and positive but deep down, there is no ‘party’ … it’s just holding on again for the next three months and the wait starts again.
I’ll be thinking of you on Wednesday - let’s take each day a step at a time ️
