We Talk Brain Tumours

Daisie, I like Martyn am really happy you are getting some help as you really need support so that you can get some rest. My sister in law who was a nurse had to give in the end as she got totally exhausted.  She said it was the best thing she every did as it meant she could give him quality time.  The Blue Cross nurses used to come in twice a day and were fantastic.  I can understand why you would be upset with your visitor but like Martyn said there always one like that and hopefully won't be back again.

Martyn, You make me laugh, no, it's not food, positives vibes are the same as positive thoughts. I have carried on posting here even though Tony's journey was so short as you all gave me such a lot of support.  It was wonderful to be able to post here because I knew people understood what I was talking about, it was also a place where I could talk about my feelings,and enabled me by reading other posts to understand what was going to happen.  I just feel if I carried on posting that maybe I could help someone else, even in a small way it would be a way a paying back the kindness you have all shown me.

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Hi folks – and thank you for sending all the positive “vibes” (just don’t tell Jan as she will think it has something to do with triple A’s)!

Daisie – You shouldn’t sit there simmering, not good for the blood you know! Next time my advice is to deliver both barrels between the eyes; alternatively, accept the help (whether it is offered or not is immaterial) and pop down the shops, but get lost for a while; should either kill off the visits or produce some useful help.

TG – Great to see you posting; don’t stop………..

Miggins – your clocks up the creak, I suggest a new one is in order.

Down to business then….

Oncologist confirmed the news delivered last week; clearly TMZ no longer having the desired effect; has now prescribed Irinotecan (chemo) and Bevacizumab (monoclonal antibodies); fortnightly regime delivered intravenously over about 4½ hours. Loads of new possible side effects – will worry about those when they happen; suspect that we will get some side effect combating drugs that we need in any event.

Jan remains in pretty good spirits and we have discussed her being brave and strong and fighting; she is now aware that she won’t get another 40 years but the oncologist declined to be drawn on how long he thought she might have/get; I suspect that this will become evident though over the next few months.

So – we still have some hope. (But precious little that Jan will develop any quirky repetitive habits such as washing, ironing, housework or cooking).

Time for some sleep.

Love and best wishes to all - Robin and Jan

Cheers Skeete, both barrels sounds perfect. You are all awesome, your hard case replies have really cheered me up this morning, I'm walking around with this silly grin on my face. XXXXXX

Morning everyone!!!!!!! - maybe my clock's up the creek too!

Daisie, so glad you got some help.  My husband, P has been in the hospital for just over a week now - the change in both of us is wonderful - because they have sorted his pain relief and chest infection out and added in some other stuff P is as good as he can be - that has resulted in me feeling more able to cope as his spirit seems to have returned - I had got really done as P's mood was so low and he was so ill and kept saying he wouldn't make christmas, it ended up pulling me down so low too - but at least now we know we can get through christmas, and even try and enjoy it!  By the way, as Martyn says Peter is totally obsessed with sorting rubbish - we're not even allowed to put rubbish in the kitchen bin, he gets most agitated if we do (and we do!) - and then he spends quite a lot of hours per week sorting out the recycling, unfortunately incorrectly but who cares, into different bins - he's going to go mad when he finally returns home - I've been so lazy on the sorting front!

Robin, I hope the treatment doesn't give Jan the side effects they have obviously discussed with you - and you too will hopefully enjoy christmas - good to hear Jan is remaining in good spirit, it's so hard when they're understandably not.  Take care xx

We all know life isn't fair but some days seem less fairer than others - me? - well at the moment I'm taking a break from defrosting my broken freezer at this unearthly hour (my back is killing me) - I was at the hospice until 8.30ish tonight (P hasn't come home yet, def tomoz) and decided I would go to Tesco's to pick up some things for the next couple of days and get some xmas food in - I left Tesco's £150 lighter at 10-10.30ish - I get back to my town 20mins down the road only to find the police have blocked the only access into our estate - my house is about 1.5miles from the junction.  So I parked my car in front of a policeman who said that I looked despondent - well I was although I didn't think I was that obvious - I know it's really sad as someone is obviously in a bad way from being knocked down and I haven't any bother about the police having to block the road off but there was nowhere to go as they were shutting it for about 3-5hrs!!!  P's wheelchair was in the boot so all the shopping was in tesco carrier bags all over the car - the nice policeman has said he'll look after it all for me and so I walked home.  I decided that since I'd bought lots of things that had to be put in the freezer I'd best defrost my 'auto-defrost' freezer which has already seen the repair man twice before - I've taken the back off and blown up one hairdryer and now am attempting to blow up hairdryer number two - screwdriver bashing away at the solid block of ice on the back of it - I find myself thinking my life becomes more unbelieveable - I thought I was being clever by getting ahead - but just shot myself in the foot.  Josh is going to walk up with me later tonight - about 1ish in the hope the road is reopened and I can bring home my xmas food!   sorry moan over - but it is unfair isn't it?

Oh well, best go and do some ice sculpting xxxxxxxxxxxxxxxxxxxxxxx

Many clocks are just plain wrong.

Mandy I can hardly believe it. Words fail me and that is so rare. Unfair? You are right. Bum. It's the only word for it. Bum.
But fantastic P coming home and feeling better. XX

Robin, excellent to hear that there is a treatment. It's so worrying but stick on in there. I know you will. Any man who has a chicken bodkin and is not afraid to use it is not one who gives up easily. xx

Snow on the ground here now but probably not for long. Love that muffled effect that snow gives to sounds - and the strange light.

Daisie, just a big hug. xx
TG - take care! Martyn will start offering you  a job soon...  xx

Best wishes,
Miggins xx 

Hello everyone. I haven't been on for ages as have had internet issues but I want to say I have been reading all the posts and thinking of you all. I have been enjoying your banter and thought of you when I saw TCO on '3 for 2' in sainsburys yesterday! 

Daisie I'm glad you are getting help. I think all the posts about being your loved ones partner etc and not necessarily their nurse were very important. Well said. 

Robin I'm sorry to ehar that things are progressing but I'm very pleased to hear there is more treatment for Jan. How have you been able to get avastin? Is she on a trial?

Martyn hope you & Doreen are well today. CH you continue to amaze me with your thoughful and helpful posts on here when you must be having it hard yourself. Hope you're ok.

Well I finally have internet again so will be making sure I catch up on what is happening to everyone and start posting more. I don't know where I would be without this site so I'm glad to be back. Dad was discharged from hospital on Tuesday and is now living with me. It is fantastic to have him at home and he is very pleased to be out of hospital. He is tired and his mobility is not what it used to be but we're doing ok so far. We saw the oncologist yesterday and started on the new chemo - lomustine (or the 'c' in pcv). They aren't giving the full pcv just now as they said this component is the one that works best and they don't want to give him too many side effects etc while he is not so well. It sounds like they may go for full pcv on another cycle if this goes well. Not sure. Anyway at least we all feel like we're doing something. Hopefully he won't get much in the way of side effects. 

I now feel I can plan a nice Christmas for us all. I think I had been hesitating to get too excited about it before. So it's off to make the Christmas cake!

Thinking of you all and hope your day is as good as can be

Rona xxx

Mandy your luck comes from the same pot as mine I think, two years ago my washing machine went to washing machine heaven (after several repair jobs) £460, last year my brain decided to melt down and have a big old seizure and grow a brain tumour, oh and then in January my oven broke (£600).............this year, our car has broken down, the alternator (spell?) so today we will be £275 lighter to Fords credit!  Which thanks to my awful short-term memory I thought I had put £200 in an envelope on our cork board but when hubby asked for it today, it wasn't there.......ended up going through the bin which is under the board, the recycling which is nowhere near but you never know........1.5 hours later I find it was in the envelope with the money for Christmas....I have no recollection of putting it in the same envelope at all, still convinced someone is playing tricks on me LOL

As if having 3 drains on our resources isn't enough, hubbies family only seem to reproduce during the two week christmas period meaning we have birthdays on 21st, 23rd, 25th (yep his dads) and 28th so double whammy there too!

Aint it fun!!!!!!!!!!!!!

Since Monday I have been waking with headaches which stay all day and aren't touched by paracetamol.  I finally rang my specialist nurse as the neuro-surgeons words of "waking with a headache is classic tumour symptoms " rings in my head.  This is virtually a year after it all kicked off, and I only finished chemo 4 weeks ago, she has tried to reassure me she is 98% sure its nothing, but if its still here tomorrow gotta ring back and I think the dreaded steroids maybe re-started!  Its a bit better today still there but definately less than yesterday...... I am hoping its just the stress of xmas and car breaking down etc! 

Right thats my moan for the day done, now to get tidy before the parents arrive for a visit!

Good morning all,

Robin,  good news me thinks?  every success for Jan.

Mandy,  a screwdriver to the freezer!!!  Great news about Peter's condition, but rubbish beware today.

TG,  great for us all that you are hanging around with us.

Rona,  good news re Dad,  all goes well for a good Christmas at yours.

Daisie,  knowing Miggins as I do,  G giving the 'wife' a left hook,  could be rythming slang you know!

I don't like doing lists like this as I am bound to have missed someone, hope not.

Love to all,

Darling XXXX

Debs,  so sorry our posts must have crossed.  Are paracetamols all you take for pain relief?  Doreen takes them alongside tramadol slow release in varying doses according to pain levels.

Best wishes,

XXXX

Good morning from sunny Turkey,

Robin it's so good to hear that there is more treatment available for Jan. Fingers crossed that Jan doesn't suffer any bad side effects.

Mandy, Hope you managed to recovered the car and you got the fridge defrosted, I use a hand held steamer to do mine and works like magic.  Hope P comes home today, sounds like he is going to busy on the sorting front ,lol.

Rona, excellent news about your father coming home as it will mean less stress for you.

Debs, I always get terrible headaches when I'm stressed but understandable in your case that you  would worry about the cause.  Life must be very stressful for you with your condition plus the fact you have had an expensive year which is always stressful and  the added stress of the expense of christmas, I not surprised, hopefully once christmas is over and done with things will hopefully  start going right again for you. As for putting things in the wrong place and not recalling it, well I do that from time to time so don't worry it's just too much going on at one time.

Things you may or may not want to know:-

We do not celebrate Christmas in Turkey as it is a Muslim country but I still put a christmas tree up as do some other Turks and all the shopping malls are decorated  to the hilt, but rather it is to celebrate the coming of the New Year.  If you ever spend New Year eve in Turkey with a Turkish family and you are female don't be surprised if you and the rest of the women are handed a small package, it will contain a pair of red knickers.  Why is that you may well ask, well it's just a bit of fun really, at midnight you are epected to change into them, (not in front of the men I would add) because it is supposed to bring good luck.

Hope that everyone has a good day xxxxxxxxxxxxxxxxxxxxxxxxx