We Talk Brain Tumours

Ilowe, your BIL may be worried that if they tell the staff about the nausea and vomiting the Chemo will stop.  It won't unless its really really really bad.  There are lots of different types of antiemetics and different ones suit different people, they are not specific to TMZ (temazolamide).  As you are not the one going to the hospital you need to let them both know.  Suggest that they speak to the nurse or pharmacist and explain the problem.

Wish your sister all the best

Martyn, great to see you here again xx

Joanna x

Good luck to Dan with the chemo and radio - enjoy! (I've just finshed a period of chemo so am feeling smug, sorry)

llowe: there are loads of different drugs to help out with the sickness. At least ask your brother-in-law to speak to the doctors. If you haven't already, have a look at "Controlling nausea and vomiting" on this Macmillan site (sorry I couldn't figure out how to make it a hypertext link). I was given Omeprazole but luckily didn't have to use it much - so I guess it must have worked.

Thank you for your responses, I have actually been texting my sister this evening (just after posting that message) and she said she spoke to them today and the Nurse said to give it a few days and then they will try something else, so im not sure what my BIL was saying, maybe he got a bit confused which is fair enough with all thats going on.

I have however made my sister chuckle tonight as I have told her that when she shaves her hair that I will be doing the same as i cant have her bald on he own, albiet I will not be shaving my hair but just cutting it short as I can not walk into work on a Monday morning with a shaved head, I dont think the 21 Three- Four year olds I teach will like this, it might scare them, then I said actually that could be fun, I might just do that, oh she did laugh.

Love to you all

Hi Pete,

Just wanted to add my condolences to those already left on here.  You have been an inspiration to many people in your love and care for Ali.  I can only repeat what others have already said - she is free from pain now but will be with you forever.  Please take care of yourself.

Sue x

Thank you once again for your messages.  Julie, thank you again for your offer of legal help.  I will see how things go with the financial side of things.  Ali didn't leave a will as we didn't see a big issue with following the state's routine.  Also, we just didn't get around to it.  I've not begun to think about that aspect.  I'll get the death registered tomorrow and then go on to informing the relevant parties (bank, DWP, employer, utilities, etc).  If you could let me know via pm if there's anything I need to address that I might have overlooked, I'd really appreciate it.

I spend this afternoon at my brother and sister in-laws and with Ali's nephews (9 and 11 year old boys).  They're handling the situation very well considering, and we had a nice afternoon and evening just spending time together.

The boys are putting together a memory book where they're writing everything special down that they remember about Ali along with some drawings.  This is something that they'll be adding to over a long time period so that they have something to look back to in future times.  They're also going to write Ali letters to include in with the coffin.  I've also let them have a couple of Ali's special teddy bears to take into the service to hold them.

Pete, even in your grief you have managed to do a compassionate act, by giving your nephews something special to Ali for them to take to the funeral is extremely thoughtful and just wonderful in my eyes.  The memory book sounds great, I've heard of them and think I read somewhere of a cancer charity that sends out memory boxes for people to fill.

I hope today is gentle on you.

Ilowe as I remember, RT can make you feel/be sick but you aren't given medication unless you actually need it and as there are many combinations that work with the oral chemo (TMZ) I am sure the hospital would look at what she is taking and try to work something out.  I am so sorry that her treatment is giving her grief already and its only day two.  I am no doctor, but I would say its more to do with the chemo than RT. When I was having my treatment (I had RT alone, followed by chemo after) I had to see a doctor once a week, even though I didn't need to.  They ask you how its going and look at your scalp etc etc.......mine was on a Weds, so hopefully your sister will get the same and have a chance to talk to them then if she doesn't want to make a fuss now.  I hope it gets easier for her.

Good luck Dan, hopefully your RT will run smoothly, my mask used to disappear from the machine room quite often and they would have to go hunting for it.  I joked that it was like Toy Story and they all came to life at night........mine was obviously bored of the 'heads' it was with and had to go looking for better company.......they laughed (probably scared more than amused lol)....WEIRDO ALERT! The things you do to pass the time!

Hope I haven't missed anyone out, to those who have recently lost loved ones, I hope you are coping as well as can be expected.

Love & Strength to all who want or need it xxx

Yes Debs.  Humour helps so much during the treatment and after care.  I was constantly making fun out of the various indignities in an attempt to lighten the mood.

I did this a great deal in hospital as well with the nurses and other staff around Ali as it helps their job as well, and also had the effect of connecting them emotionally with Ali.

Breaking rules (to some extent) always helps.

Ilowe,

Ask your sister to ring the Mary Baron Suite at Essex County Hosp, they have a specialist brain tumour nurse. When dad was projectile vomiting on day two of his chemo (after his rt appt that day and when they'd returned home), they managed to arrange different meds and mum picked them up for him. He still felt nauseous throughout the remainder of his TMZ treatment but didn't vomit anywhere near as much. Hope this helps.

Pete - I agree! A sense of humour is an absolute necessity!

When dad was at the very end of his life and we were literally waiting for him to stop fighting, my sister and I had the nurses in hysterics. My sister was joking with dad about how she was using up her annual leave to fly from NZ to sit and watch him sleep and I joked about the waste of NHS resources! This will sound sick to some people but dad always had a very sick and dark sense of humour and I know he would have chuckled with us. The nurses commented on how lovely it was to have a family with a good sense of humour. It is that humour that has got us through our darkest days since dad left us too.

I really hope I don't offend anyone by posting this.......but a friend of mine who has just lost her husband is looking into it and I personally would like something made for my three children, so they have a bit of me forever.

I know there are those who have just lost loved ones and I really really don't want to upset you but on the other hand, it might (and I say that not lightly) be something you may be interested in:

It is a two man company in good old Essex that incorporate the ashes of loved ones and even pets into bespoke glasswork. 

ASHES INTO GLASS

Love & Strength to all who want or need it xxx