We Talk Brain Tumours

Naomi, don't be sorry about anything at all, we're all friends here...!

Nope, Ali doesn't show any signs at all of any bed sores, we have her on a good pressure matress so haven't had to go through that pain yet.  She doesn't really move a great deal in bed and stay on her back for all of the time she's sleeping (only rolls when we need to move her).

Hi everyone,

Im new to the site, been lurking for a couple of weeks and trying to figure out how and where to post, I was directed to this thread by Debs, but still not sure if im posting in the right place, im not used to all this. Ive just copied and pasted my original post here below. 

 My mum aged 84 has recently been diagnosed with a brain tumour, they said it was secondary at first but couldnt find the primary, now they are unsure if its primary but dont want to do a biopsy to find out. She has 2 growths, one 5cm and one 3cm in the left lateral ventrical (I think thats right).  Basically they have said she will only get palliative care, no treatment at all except steroids. We are finding this hard to take in, 6 months ago she was fine, even now the only problems are that she is confused and her speech is muddled, shes not in any pain and doesnt have any seizures.

I know she is 84 but after doing research I thought they at least would try radiotherapy. The oncologist said she doesnt think it will make much difference and could make her worse, and that it would only give her a couple of months more, is this right, I think we were hoping it might bring our mum back for a while, just so she can at least talk to us, tell us how shes feeling, I dont know if this is just selfish of me to want that actually. The steroids have really helped, her speech is a lot better than it was but it is still hard understanding what shes trying to say.

I would just like to know if it is normal to not try anything and whether radiotherapy maybe would affect her badly because of her age, has anyone had experience of radiotherapy and can tell me a bit more about the side effects of it? We just feel like we cant just do nothing, she just doesnt seem to be that ill.

Any advice, or information on this would be most welcome,  and can I just say that after reading through a few posts on here  you are all an inspiration, this is such a horrible thing to be going through and its comforting to know that others understand. I hope that doesnt sound bad, im not very good at expressing myself.

Elaine x

Pete - The dist nurse gave Nick some sorbaderm cream to apply on pressure points as he has now been bed bound for about 5 weeks.  This is supposed to stop them coming in the first place rather than waiting for them and then having to treat them.  maybe worth getting some if you haven't already.

Debs - just reading your comments on nearing your sell by date.  In hindsight,  do you wish you didn;t know?  My reason for asking is that we did not ask about Nick's prognosis,  we decided to wait for the results of his treatment and then ask.  Now that this is getting nearer I am in 2 minds.  As it has been proven so many times on here, everyone is different and I do not know if I could bear the thought of living day to day on a timeline, not sure if it is better to not know and make the most of each day.  If you do not wish to answer as this is very personal I totally understand.

sending thoughts and love to you all   x

Pete - our dist nurse gave us some sorbaderm cream to prevent any bed sores rather than waiting for them to come and then treat them.  I put this on the pressure points twice a day and so far none have appeared.  Maybe worth asking for some if you haven't got any already?

Debs - I have just read your comments on your sell by date.  With hindsight, do you ever wish you did not know your prognosis?  My reason for asking is that we do not know Nick's.  We decided to wait until we had the results of treatment.  Now that this is fast approaching, I am in 2 minds.  Not sure I can cope living on a timeline and can't help thinking that if we don't know, we can make the most of each day without thinking we only have 'x' amount of time left.  Don't know what to do for the best,  Nick not really bothered,  happy to go with what I want but if it's not good news I don't know if I could hide it from him. 

Never thought that we would be in this position in our 30's!  As soo many of you have commented,  I hate this bloody disease!!

sending hugs and love to everyone   x

sorry for 2 messages!  first one disappeared so I re-typed to find 2 on here???

Elaine

Sorry that you have had to join this thread.

My husband has an inoperable BT and was diagnosed back in march this year.  He went through 30 sessions of radiotherapy (every day for 6 weeks) The only real side effects where hair loss (he was pretty much bald anyway so not really a problem) and extreme tiredness.  All his other symptoms are related to the tumour itself due to location.

One risk that the Oncologist advised on was that it could make things worse but given Nick's age we did not feel that we had any other option than to go for the treatment to try and shrink it.  Nick's was the size of a satsuma on the right side just at the top of the brainstem.  Hopefully, everything crossed in a few weeks I will be able to say it is now smaller!

If you do not feel happy with the information that you have been given,  you could always ask for a 2nd opinion.  It is not selfish of you to want to try anything to gain more time with your loved ones,  this is something that everyone will have wished at some stage and would want to try.

Wishing you all the best  x

Pete - thank you for asking that question! I was just wondering as dad seems to lie in one position for about 12 hours now (his urine output is decreasing) and I did worry about bed sores, especially as he tends to prefer to lie on the sofa downstairs so mum feels nearer to him.

Liz - that is such a hard one to answer and of course all of us on here will have different opinions BUT here is mine. When dad collapsed a year ago and he was biopsied at our regional neurological hospital we were told he would have probably 12-18 months. He was then referred to our local oncology hospital whereupon, one week later, we were told probably 3 months, at best 6 months. I cannot begin to tell you the damage I feel the latter diagnosis did. I immediately told my children to prepare them for dad's imminent death (telling them he wouldn't probably see Christmas) and like I said in my earlier post, every little thing - even a simple cold - was like a red flag to us and we watched him more closely for signs of deteorioration. And here he is - almost 12 months later - still here, albeit going dowhill rapidly now. My point is we had a good six to nine months of good quality time with him that was almost wasted in a way. We felt like we were waiting for him to die (as did he) and I feel we wasted some of the time that he was well. Of course doctors have to give you realistic statistics but I have learn the hard way that they are a very loose guideline. Please try and be positive - Nick is young and otherwise healthy, the survival time for those under 40 is far favourable than for those over.

Hope all goes well tomorrow.

Naomi.x

Pete - I meant answering, not asking!

So many typos in my previous post. I'm cross with myself!

Hi Elaine,

Sorry you needed to join here but as you will have seen, someone is always here to help when you need information.  It really is a wonderful site.

My mum is 63 and Hull hospital said no to radio (after surgery) then Leeds offered this but they said it would only possibly give mum weeks extra and she could go backwards with the treatment and not recover from that therefore the extra time would be spent travelling to hospital every day and then possibly with her having extreme tiredness.  As she is quite well at the moment, she decided not to go for it but to enjoy feeling well as long as she could.  She has no use of her left side they said radio wouldn't help this.  I wanted her to go for everything available at first but this time when she is feeling good is precious and I think she made the right decision for her.  She is in the hospice at the moment juggling meds but hopefully will be out soon - in a wheelchair - but she can still get out if she fancies - it just takes longer planning and getting anywhere and you have to make sure you know where the toilets are everywhere!

Pete - thank you for that explanation, I didn't understand but when you go on the first pages of this forum it does talk about trying to get this site on the front page.

Deli - you are so right to say ignore the timescales given as yes, everyone is different.  I have gone down to four days a week at work to have one 'mum and me' day while the kids are at school just so I can relieve dad for a day and will change this again as and when necessary.  I don't have the luxury of packing in work to be with her constantly and the fear for me is that she seems well and obviously isn't and I may be wasting time.  Dad also isn't coping too well with all this, he is having a lesson in moving her around tomorrow though so that may help.  I think he is depressed but they put him pills which made him seem drunk so he stopped them.

Debs you are very brave, I can't begin to understand how all with the BT cope with knowing about this.

Peaceful evening to everyone xxx

Elaine, it's sad to see you have to join us, but you can always count on support and advice from those of us who have been here before.  Please feel free to ask as many questions as you want to (you must be full of them at this stage).

It doesn't surprise me that the oncologist is feeling that there's no need for radiotherapy, especially considering the age.  My wife had 4 weeks radiotherapy to her brainstem tumour and the after effects made her very tired.  There are times when the side effect of the treatment can cause more problems than the tumour itself.  The oncologist (and team) will also be aware of the quality of life, which is vitally important with a condition such as this.

Liz, we've been using Sudocrem which helps a great deal (well, we've not seen any sores).  We've also been using Oilatum body wash and cream, which we've found is far better at treating dry/flaky skin than any other creme from Body Shop/Nivea/Savlon/etc. The added plus is that it's available on prescription, so if anyone needs any good skin cream, this is the stuff to get.