We Talk Brain Tumours

Spotted this quotation yesterday and it spoke to me.

God, give us grace to accept with serenity the things that cannot be changed, courage to change the things that should be changed, and the wisdom to distinguish between the two.

Reinhold Niebuhr.

I saw this one today

The clock of life is wound but once, and no man has the power to tell just when the hands will stop, at late or early hour. Now is the only time you own. Live, love, toil with a will. Place no faith in time. For the clock may soon be still."  

Cx

Hello everyone,

I havent posted on here for quite  a while now, I was really struggling just before xmas and coming on here reading other people's post knowing what others were going through and what my beautiful sister will go through one day was just not helping me.

My sister is doing well, starts her Chemo again a week on Monday but she's good, she did have a slight sore chest but Dr kept an eye on it and it didnt progress into anything like he feared it might, she did however last week get diagnosed with inflammed ribs and given anti inflammatories but she is ok.

I havent read all the post since ive been gone but I do hope everyone is coping as well as they can.

Debs I hope you get your results soon, I have no idea how we will cope when Justine comes to having her first scan after her treatment it must be horrific waiting so god dam long.

Keep fighting and stay strong everyone

hello everyone..

its quite upsetting to read some of these posts...i never thought that people could think, let alone say some of the comments that you've had to put up with from so called well meaning relatives....

since given my prognosis its been something on my mind that i wanted to try and get out of the way early...

my 2 sons are only 18 and 20 but they are the best peopleI I could ever talk to...without them bursting into tears or complete refusal........

I have a lot of family who for one or another reason I have not seen for maybe 20 years....but I know they are waiting to join the..'we have to pay our respects' queue...or 'we have to see her before its too late'......I don't ever want to see these people......and these are close family, including my brother..

Then my other specific instruction is regarding my ex husband.....he couldn't cope with me having cancer in the earlier years...I'm into my 4th year now...he calls round to see the kids, stands staring at me and bursts into tears....like I really need that around me even now..when I'm still relatively active.

I filled in my plan for later care that I got from my macmillan nurse....I  want to go to a hospice...the kids get my house so I'd love it to go back to being a big happy family home....

I'm also making my eldest son power of attorney.....

cos he's a big tall lad and he said...''don't worry mum....i'll kick out the riff raff......and they can buy their own beer and food at your funeral...''

love and hugs  jackie xx 

Hi Jackie

Your sons sound wonderful and you must be so proud of them, the way they are coping. My daughter is 21 and my son is 22. They are also coping brilliantly and I am glad that their Dad is able to see what fine adults they are developing into. Our daughter comes home from uni at every opportunity just to sit with him and, when he was mobile, did all of his physio exercises with him. She rubs his cream into his head and trims his beard (and eyebrows, nose and ears!). Our son does the night sitting with him when he's home, will do all of his toilets with him, even cleans him up after without a word of complaint. I feel very lucky to have mine, I have know doubt you must feel the same. Well done, what a great parent they must have!

I also have a bit of a complicated relationship with my family, especially one of my sisters. She made her excuses a few weeks after Tony's diagnosis  (some pathetic argument she created out of nothing) and I haven't seen any sign of her since. She beats her chest publicly about how much this has affected her - is all over Facebook calling Tony her superstar brother in law. In reality, she hasn't called, emailed, or visited in over six months. I was tempted to write a comment but couldn't actually be bothered. Me and the kids know the truth. 

Anyway, she's coming to visit over the weekend and I've got her here for two nights. She's already set up her dramatic reaction and warned me that she's going to fall apart. It's pathetic honestly. I have three other sisters in addition and have only the most superficial relationship with one of them. Had no contact with the other two since my mum died in 2008.

Families eh?

Jackie, you sound so organised, getting everything straight and making sure everybody knows what you want. Well done for that. I am sure it will make things easier for your sons when the time comes. I never had those conversations with Tony and now it is far too late. His illness has progressed too far for me to have much discussion about anything to be honest. I am sure you have saved your children an enormous amount of debate and questioning. What a wonderful Mum they have. 

Much love.

Pam

x

hiya pam..I've been reading your posts, you and your tony have got it spot on...you sound like a really good close family...and kids really do come through when they're needed to..

i like the 'bring your own beer' bit as well....! he's in for a shock..!

i've also had the facebook experience...unfortunately my ex became 'friends' with complete strangers, women on a mafia game he started playing...he told them all about me and even showed them around my house on a web camera......it was my lads that found out....

while i was in hospital he used to have 'parties' with them on a web cam and microphone...the kids heard them singing and and dancing........!!!

i'm past it all now and we're better on our own......so we just find it all amusing....

love and hugs

jackie xx

Pam - my sister lives in New Zealand and there have been times in the past that it hasn't felt far away enough .... say no more!

May I ask a question to those who have lost a spouse? I hope it doesn't offend?

I have just had the most distressing phone call from my mum. She rang me in hysterics saying I never go and see her enough and that I don't invite her over enough and that she is so desperately lonely. I always thought she didn't need to be invited here and see her about twice a week - I'm not defending myself. She begged me to go over today but I have one child off sick from school and no car seat for the baby as it is in my husband's car who is out on appointments so can't get it back. She says she is too distressed to drive. I have promised to go and see her tomorrow but it doesn't feel like enough.

I have tried not to fuss round her and haven't wanted to deliberately involve her in anything in case she feels patronised. Have I done the wrong thing? How do you all feel? Because I have six children and am always surrounded by someone and am never alone, there are times when I long for solitude so to my shame, sometimes being on my own for a few days sounds like heaven. I don't know how she feels as I have never lost my partner. I don't know what to do and feel like I'm getting everything wrong.

Also, selfishly, I feel like sometimes mum isn't interested that I've lost my dad. I'm aware I sound like a spoilt brat and that my grief will never be equal to hers but even so ........ eugh what a mess. Just because I have my family with me doesn't mean that I don't miss him all the time too, if you know what I mean?

My only sister lives in New Zealand and sometimes the pressure to be everything to everyone is overwhelming ... this is why people should avoid only having one child if possible!!

Sorry for being opinionated and whingeing. Didn't know where to turn.

With love,

Naomi.xx

Naomi - when mum was ill, I changed my hours at work so I could be at home with her, slept over with her, popped in before work, lunchtime and after and when she passed, my dad complained that I didn't see him enough and I am sure he wanted the same attention mum had had - which may sound daft.

Again I have three sisters and one brother, yet me and one sister always did it all and are still the only ones that see dad now.  We both have him for tea once or twice a week each, do some ironing for him, help him with all his paperwork and yet still he moans and I am not having it.  I do as much as I can or actually want to with two girls of my own and a job, plus fundraising and PTA.  He has recovered almost fully from the stroke and is only 61 so doesn't need much help.  Has car and can get anywhere yet prefers to sit and moan that no-one has been or rung.  Yet, the others that don't bother with him and hardly helped with mum either are the ones that get all the sympathy, the ones so sorrowful on facebook with all the messages of support from people and it does my head in!  Their excuse is that they don't see much of us or dad as brings it all back - b.....s! they weren't around then and still aren't.  I acutally want to shout at them that they aren't coping as they feel so guilty at not being there enough!

I even had a facebook message from an aunt telling me off that no-one had rung dad that day and he was lonely and could I make more of an effort - let me tell you, she got it back big time! ha!  I was so cross!

Seems to be the same with many people - how are people so different!

Love to you Naomi, hope you are well

Love to all new and old, can't get time to read back at the moment as been so busy, but sending strength to all xx

Hi Naomi,

Dont know if I can help ......I lost my husband 5 months ago , I have 2 daughters and a son all with young familes of there own. They are all brilliant to me ( which I know in my logical mind) but there are still times when the lonliness is overwhelming. The fact that you are on your own with every mortal problem and that everyone else has thier life still in tact in very difficult to swallow.

Also something happens to your brain, it sounds daft but not only can you not concentrate but I keep going to do daft things.............like when Im driving somewhere totally familiar I sometimes cant think of the way the traffic goes ( it sounds like i am a totall disaster ) ! Its a momentary thing. I feel totally mixed up half the time and the other half I feel ok. I get really down if I have a day with no plans so I do a lot of mouching round the shops.

I was married for 41 years so its not going to be easy to get over it . Hope this has helped a bit..........sorry I am not very good at writing, but wanted to say something to you in response.

All the best with your mom, love to you both.

Denise xx