We Talk Brain Tumours

Evening all,

My son Dan is on his 2nd week of chemo / RT. He's complaining of aching legs (which he was told are a side effect) Can anyone suggest something to ease this ?

Thankyou

Anne

Well my beautiful sister started losing her hair over the weekend and yesterday it was falling out in bundles so she had the hairdresser wound today to shave it all off! She sent me a picture and i must say its really upset me, its almost like its made it all real, she now looks ill, everyone will know she's got cancer I will constantly be reminded when I look at her whereas before there wasnt any tell tail signs!

I have so far raised £1175 for my sponsored haircut and I'm so pleased! I never expected to raise even half of that! And my sister is very grateful.

Love to you all

Hi Anne.  It's difficult to know how to address Dan's sore legs as I don't know what the actual cause is.  I think it's something you might have to talk to your oncology/care team.  In the short term, maybe some paracetamol might help.

Ilowe.  Sorry to hear of your sister getting rid of all of her hair, but try to look on the positive side here.  It's a sign of her accepting the situation and being proud of who she is as opposed to thinking of what people think of her appearance.

Ali was concerned that she might lose her hair, but I told her "If people stare at you, it's their problem, not yours".

Hi Anne

TMZ can casue muscle pain and also swollen legs.  However if Dan is worried at all get the GP to see him and give advice or as pete suggested contact your oncology team - they never mind listening and providing further advice

Ilowe, it must be so sad to see your sister lose her hair and your efforts to support her are brilliant.  Try to remain positive, she is losing her hair becasue she is receiving treatment, a small positive to start with but i am sure you can think of many more

Jx

Hi everyone

Thanks for the welcome and the vino .

Julie, Chris has just had the full blown seizure when he collapsed in July last year then had a minor one and another massive one in Dec last year .Caused mainly because he decided to stop his steriods after his RT. Went back on steroids but eventually stopped taking all meds after his last chemo ended in May. Not having any scans either. His doc says to come bac for scan when there are any changes but he is terrified and won't go.

His short term memory is shot to pieces, like Debs described it being like Dori from finding Nemo. He has terrible problems with indegestion and reflux. He was being sick but when DN came he didn't tell her I did. He played it down a lot but fortunately the DN gave him lansaprosal again which has deffo helped. She also suggested going for a scan but was told in no uncertain terms that he does not need to because he is fine.

Has continual lower bac problems but I had to drag him shouting and screaming to our GP ( who is just wonderful) Gp thinks not connected with Damien (My affectionate name for his tumour) Chris just has pulled muscle. He was sssooo relieved he is just terrified all the time now and I can't seem to alleviate these feelings. But apart from this we go walking twice a week and lots of other things. Chris is just a lot more tired now.

IIowe Chris lost his hair in places with the RT and his all grew bac. He was 52 when havin RT and had quite a lot of grey hair  which actually grew bac dk brown.

Pam I hope you get some help love take care

Be strong everyone love Denise

Hello to everyone on here.

I used to post on here a while ago (my father had 2 grade 4 tumours) but now tend to be more of a "lurker" so I hope you forgive my intrusion!

Pam, your post made me smile with some recollections of incidents that happened to us but also was one that brought back some unhappy memories of things my mum went through as a result of Dad's illness.

We had a number of difficult scenarios with Dad - one more memorable than most which included 2 of the 3 emergency services, a police van, most of the street out to gawp and my Dad being accompanied by security people at the hospital!!  Anyway, the point of this ramble is that I would like to offer my experience of "calming" drugs with you.

There are many drug options, if this is the right route for your husband, but what we did not appreciate is that some "typical" calming drugs do not work well with brain tumours and may even make things worse - certainly our GP did not know all of this.  We got our Oncologist involved and he was fabulous at talking to the GP and between them agreeing what the best course of action/medication was. 

So, I hope that you don't think that I am talking out of turn - I just wish a calmer time for you in difficult times. 

As an aside, the mental health team at our local hospital were amazing with my Dad and helped him with some coping strategies which did seem to have a calming effect - to be fair, we only got access to them because of the above incident - but my experience in dealing with this terrible illness was to shout loud and often for help!

Kind regards

Samantha

Morning everyone,

I am still around, just been battling the 'man flu' that hubby so thoughtfully shared, it's left me with a nasty little cough, which now drives him mad (haha revenge is sweet lol).  Also it's that time of the year, busy busy busy, school stuff, kids stuff, family stuff, karate club stuff....my head will be spinning soon!

Illowe, my hair started to fall out around 14 days into the RT and everyone around me was telling me to shave it off.  NO WAY was I going to do that, no offence to anyone but what you said about your sister now looking ill, was what I was trying to avoid.  I lost my hair from the crown forward and from above ear to ear...I looked like a cross between Max Wall (for the oldies amongst us) and Andy from Little Britain........... but if I put a hat on, no one knew any different.

I can clearly see how wonky my smile was here, as my brain surgeon quickly pointed out to me, due to right side damage my left side was affected!

When my hair started growing back, I have a big 'sparse spot' right at the bloody front, yeah thanks Buttercup! and although I have hair, it looks like when men are balding and have a few strands here and there and so had to wear a headband until this year (my surgery was Jan 09)

The aging rockchick look ha ha.  I absolutely hate having my photo taken, even moreso now... my lil chipmunk cheeks!  

This was taken around May this year, my patchy fringe, underneath that I am pretty bald.........I use lots of hairspray to keep that in place and if its windy, I just pop a hat on (always have one in my handbag).

So there's my hair journey, I am still majorly depressed about my bald spot, I won't go swimming and panic if I am out in the rain.  Good job big handbags are trendy, I always have a hat, umbrella and hairspray with me AT ALL TIMES, even on my walks to Tesco's.  Silly in the grand scheme of things, maybe........ but that's me for you.  Sometimes it is the small things we obsess over, I've known others to just shave it all off and be very happy like that too, quite liberating they say.  I also paid out over £200 for a wig I wore once, still my daughter practises hairstyles on it now, like a very expensive 'Girls World'.

Can't actually believe I have posted 3 facial shots but hey ho there I am, at the very least someone will get a giggle out of it....oh and before Buttercup, I always had a bob, never had long hair but now, its like I need it!!!!!!!

Hope everyone is doing as well as can be expected.

Love & Strength to all who want or need it xxx

Debs.  You look as friendly as you are.

You look wonderful Debs, with or without hat or headband - have to say, I like the headband look x

beautiful Debs, nice to hear from you missed u Julie xx