Brain tumour support

Any news on the scan yet? I hope things are settling a little for you. 
Hopefully hubbys stomach upsets are getting less too. 
big hugs xx 

Thanks so much for checking on us.  We saw our consultant on Tuesday and he said he was pleased with the scan and his blood tests so we have gone straight into cycle 1 of the Temo so seem to be following your path.  We go back in 4 weeks and all being well they up his dose and we keep going.  we were very relieved to get some positive news.  next scan booked for 4 months time.  His stomach is a bit better but still nowhere near as reliable as it was.  His taste and appetite are also slowly improving.  He is still lacking in energy and pretty tired which frustrates him as he can't do things in the garden like he used to and things like that.  but we are in a different world now.  How are things for you?xx

Good news that Consultant was pleased with the scan. My hubby felt quite sickly with the increased dose but took the stronger anti-sickness which worked. It seemed that for 2 weeks after this round of treatment my hubby was quite tired but week 3/4 could feel energy levels rising again.

We saw the Consultant yesterday for round 5/6 she is still pleased with him. MRI scan is booked for 30/06 so fingers crossed that the tumour has stayed reduced.

Sadly it doesn't look like we will be travelling abroad again. Insurance quotes are £2000+. I will keep looking though

Take care xx 

Hi, thanks for your update.  So pleased to hear you are still doing well.  are you doing some normal things with friends together and/or going out seperately at all?  mine isnt keen to be without me so i have to admit i've been missing time with girlfriends, and other people in general.  i thought he may want some time with his brother and friends without me but not so far.  he's not been that keen to see other people at all so far.  we went out for lunch last week for the first time since the christmas diagnosis which was lovely and felt almost normal.  i understand with his stomach upsets and taste problems he's been reluctant to go out but am really hoping things will improve and we can do a bit more.  we are making the effort to go out for walks every day.  being totally selfish and i hope you won't judge me for it but i am already worrying about my Taylor Swift tickets for August and i feel awful about it but its the only thing we have booked this year and i was so looking forward to it and i think am craving doing something fun and normal.  we have booked a hotel by the Stadium to avoid the late journey home and are hoping for the best but will decide what to do nearer the time.  has your consultant given you any guidance on travelling around the UK or abroad or do you think it is just what you feel up to around your chemo cycles?  i hope you are managing to find some normality and joy from life.  much love and thanks for your support xx

Hi, 

just checking in with you to see how you are. I hope your hubby is feeling a little better. My hubby is now having periods of anxiety which became more obvious when I have just been abroad for a week with my friend. I wasn’t entirely sure that I was going away until the plane took off. As it turned out the support he had in place was good for him. 
Hopefully your Taylor Swift concert will be fine. 
We are back to see Consultant to get the round 6/6 chemo then the scan 30/06/24. 
sending love and best wishes to you xx 

Hi, thanks so much for your note.  I'm so pleased to hear you managed a break with a friend.  I hope your hubby is feeling well in himself.  We just finished cycle 2 on Friday and since then mine has been sleeping on and off almost all the time, the exhaustion is on a completely new level (he is asleep now) and he has also lost his appetite which is making him a bit grumpy, but no sickness or any other side effects so far thank goodness.  He has his next scan on 25th and then consultant review on 1st July when all being well we get cycle 3.  Last time the consultant said his blood results were so good he had to re-review them as he couldn't believe them the first time!  The GP is so pleased with his diabetes results he has taken him off the medication to see if he can manage it with diet alone which has been great as his stomach upsets have completely settled without it so hopefully he can stay off. Here's hoping for more positive scans and consultant meetings for us all xx

I hope the fatigue wears off for hubby. Great news about his bloods and diabetic medication, let’s hope it continues. My hubby’s fatigue is nowhere near as it used to be. He does tire easily but then has a sleep for 30-60 minutes and feels much better. 
As you say here’s hoping for positive scans and consultations xx

Hi, what was the most fatigue your hubby had please? Mine is getting worse by the day. He has been asleep most of the time since lunch yesterday so also not eaten which doesn’t help with his lack of energy but  I assume we just wait for it to pass? I don’t like to bother the medical team as hopefully it’s normal so just wondered if yours had it this much and if so for how long? Thanks so much xx

Sorry your husband is really fatigued. My hubby’s worst was him sleeping most of the day but would then wake for small amounts of food and fluids. He is doing really well at the minute. He usually has a sleep about an hour after his tablets because he feels it coming on. He will have a mid afternoon snooze and sometimes an hour around 6pm.
Were you provided with a pack regarding fatigue. If so have a read I found it really useful. If you need to contact the care team for reassurances they will not mind at all. Xx

Hi, thanks so much for this it has really calmed me down.  Sorry for fussing!  He improved a bit as yesterday went on thankfully and managed to get up and eat which was obviously really good and he is up and awake this morning, although still knackered.  Such bad luck though his gout has now flared up which means he can hardly walk around - he inherited gout from his father along with the diabetes would you believe - hopefully he will shake that off quickly but it does vary.  I am so pleased to hear your hubby is doing well and hope he continues to do so.  Thanks again, I really appreciate your support xx