Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

TMZ chemo

Namkrik
Posted by

Hi

taken me a while to do this. I was diagnosed with anaplastic astrocytoma grade 3 December 2017. 

Ive had brain surgery to remove what they could and confirm diagnoses, Radiotherapy.  Now on 4 th round of TMZ. 5 days of tablets, 2 a day at home. 

Everyone tells me ‘at least your at home to have your chemo’. Is it just me - I feel so lonely and alone.  

I have no contact with other cancer sufferers. 

Does anyone else feel the same ?

Namkrik
Itsmywifeiworryabout

Hi Namkrik,

Welcome to the club! I have pretty much the same set-up. I have an anaplastic astrocytoma grade 3 and have had radio and chemo (TMZ) and like you I had pills to take at home. If it is of any comfort, I'm still here and I had my op in 2011. Everything is stable at the moment (touch wood) and now have scans only yearly. I see from your profile that things are tough right now. I know that it's easier said than done but try not to dwell on the nasty side.

Some thoughts:

Do you have a Macmillan nurse you could talk to about this?
Are you anywhere close to a Maggies centre that you could pop into and have a chat with the people there? I usually have a cup of tea there before my scans.
Some people have set up groups to sit down and chat about our situations. There may be one in your area.

Luckily for me I had my wife to help me through all this. Do you have any family or friends you can talk to about all this. Even though people will find it difficult to put themselves in your shoes, they will probably want to help but don't know how. Ask a mate to sit down, warn him/her first, then pour out everything that's on your mind. They don't have to cure you ills - just sit there and let you spout out anything you want. (Then you could go down the pub )

Failing all that, do the same on here. Lot's of us have been in similar positions, you are amongst friends here.

Cheers,
Richard

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Namkrik
Posted by

Thanks Richard 

You have helped - I’m only just starting to reach out. It’s taken me a while. I find it hard cause I’m usually by nature someone who supports others - my job, friends, family. 

I find it hard upsetting people - have a fab husband, kids family, friends etc I need to use them. 

Im glad to here how far down the line you are. 

Thank you

namkrik

Namkrik
Itsmywifeiworryabout

Hi namkrik,

I'm happy to help. Let us know how things are going and if there is anything else I or we can do.

Cheers,

  .

KasiaSobon
Posted by

Hi Richard. I have same thing. Half way through Radiotherapy and then chemo. Can I ask if you have lost your hair during chemo?? I am really upset that I have already started that now 

 so pleased that you are well. You have given me hope x

kasia

Itsmywifeiworryabout

Hi Kasia,

I wish I could give you some reassurance but ... my hair came out in clumps. I found that the hair started coming out most around the areas where my radiotherapy went in and out of my head so I ended up with patches. The radio keeps on working after the sessions have finished so the bad news is the hair will still keep coming out for a while. When my hair came back, to start off with, it was a darker colour in that area but this went back to a normal colour over time.

For me the easiest thing was to get a buzz cut (like an army recruit). I used to get some funny looks when people could see the scar :). That's easy for a bloke but maybe not so for a lady. I know people (men and women) use scarves for a while. You could try going like Demi Moore in GI Jane? I thought she looked rather nice ;)

If you want to know more info please let me know.

Cheers,
Richard

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KasiaSobon
Posted by

Oh Richard

 it gives me a lot of hope knowing that your hair has grown back!! So there is a chance for me too. I thought I was really redy for it but it completely broke me. I must admit that I have a great husband and amazing friends who really helped me to cope with it. I will see till the end of next week how much more I will lose and I might do the same and get a wig o a scar.

thank you for getting back and I wish you All The Best x

Smallp02
Posted by

Hellooo.

I am a 47 year old lady diagnosed Feb this year with gbm stage 4.

I had a 7cm tumour debulked in March, followed by dual rafio/ chemo for 6 weeks and since then the plan was for further 6 months chemo... I am now in month 5...

I made 5he decision to have my hair cut just prior to my radio as I d7dnt want to coped with my hair falling out in large clumps... I since bought a whde selevtion of scarves and hats and more tecently  my lovely cousin treated me to 4 different wigs whoch I love@!! Make a me feel like a woman again!!

My hair has starred to grow back... VERY grey and fine but it is still falling put in clumps cos of the chemo so I just keep it trimmed regularly... and it isn't rherexatcall at my scar site and I've been told mixed whether it will or won't ever grow back rherecat all...

Hope this has helped bit please feel free to ask anything else.

Best wishes xx

Paula x

KasiaSobon
Posted by

Thank you Paula.

I am much better now. I guess after time everyone gets used to it a bit. I still manage to cover it mostly but decided to get a wig and some scarves. 

I wish you all the Best x