But Inside I'm Screaming...............................

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But Inside I'm Screaming...............................

No. of entries: 12 | Posted on 30 Nov 2012 08:33

But Inside I'm Screaming...............................

  • OK so long story short..... after a three year battle (and still going) it's looks like we are on the final leg and it is sooooooo hard.My husband John has had the following journey, Lung cancer primary (Jan 2010) secondary brain tumor removed (Feb 2011) Leptomeningeal disease diagnosed this summer and now John is home, bed bound and having pallative care. This week he is very tired and forgetful and really not himself. So sad :-( Our boys are being so good and brave about accepting the situation and that makes me more sad and angry at this disgusting horrible disease. Would love to let out my feelings but have to keep it together for John, the boys and neither family are particularly understanding. I asked my mum if her and my dad could come for christmas as I could do with the help and she told me she was going to my sisters ( as per the last 7 years) Thanks a LOT!!!!!! This will be John's last christmas and I expected a little more!!! I 'cope' a little to well I think and if only everyone knew how often I want to lay down and just f*****g give up they would be amazed!!!! I will keep going as John and the boys deserve nothing less. Just had to let go for a minute, thanks for reading xx

  • its very hard being the strong one isnt it.i think,and cry when im alone,im trying to put on a face for my 4 kids who dont know the full scale of their papas illness.its way harder than i thought,youve been through alot and would be easier on you if your family were more understanding,families,eh?

    have a christmas with the ones  you matter too and the ones that matter to you,take care x

  • Hi Jeanette

    Firstly here's a big ((((((((HUG)))))) for you. It's important that you do let your feelings out and luckily we have this web site to do it on. I think your parents are being very unreasonable not coming to your house for Christmas - as you say, they have been going there for seven years. There's not much more I can say really. But do rest assured that you are not alone in the way you feel. Would you beleive that I started crying today because the cable to the dyson was all tangled up !!!!!!

    Take care and lots of big hugs

    Estelle X

  • What can you say, you sound like a very strong woman, we are no where near the amount of pain you must be all going through, I had my mum come to help, but to be honest it is easier coping alone for me, you can be who you are without risk of upsetting others, I tend not to let my feelings out till I am alone in the car, then I turn up the radio and scream and rant and cry, then go home with a smile on my face.

    John and the boys are lucky that they have you, hopefully you can just think ok its our last christmas, with just US, its a special time for US, if your family are not bothered then who needs them!!!

    Stay strong, your doing an amazing job, x

  • Dear Jeanette, you 2 have it rough, what a long journey you have been on, and what an awful end game; I just bleed for you, I wish I could come help you out: cook, clean, make Christmas dinner, wrap presents, sing a carol....anything at all festive and helpful (remember I am a chef with a caree who cannot eat!  what a combo we make) .  

    Just want to wrap you in love and care and peace and say it does not matter if your mom and dad don't come, that is their loss (they clearly do not "get it") .  You will do the best you can with just yourselves. How old are your boys?  You can have a really personal intimate time as the last Christmas and think of all the memories you can make knowing it is your last...it can be so so special, the small family unit..(and without the inevitable dose of family drama injected here and there).  Their denial might be your blessing!

    Rest assured, we hear you...I have had many a day myself that I just wanted to take to my bed...and say screw the duty.....ah but that is what makes us the good soldiers we are: we plod and care and do our duty even if it is half asleep and robotic....We Are The Carers.  And good for us, each and every one.  Let go anytime, we are here. XOXC

  • dear jacq...well I would be your family of close enough...so you can have the online family,  How you make it with 4 young ones and cancer in the mix: I am full of admiration for you, you are one busy lady.

     

    You are RIGHT: Christmas with who you want to be with is the very best.  SOmetimes way more comfortable than The Family Thing where all have their own agenda.  

     

    Friends are the family you pick for yourself.  Blessings, peace, love, energy and hope to you.  XOC

  • Hi Jeanette. What a terrible situation for you to be in. Forgive me if I am being too intrusive, but have you told your family how often you want to lay down and just give up. Maybe if they knew that, they would be a little more understanding. It sounds a bit like you are the queen of the brave face, and cope more than a little too well and are so strong for family - but we have to really don't we - or everything starts falling apart. If your family will not join you, then that is shameful, but you will make this christmas an extra special time. Don't feel you have to keep everything in, you can always let go and rant/vent on here. There will always be someone listening for your cry and to listen, sympathise and 'hug' you til you feel a bit better. Sending you comforting and strengthening hugs xx

  • Hi Cheryl, thnaks for your reply. If I am honest I juat want to cancel christmas as all the lights, tinsel. cards and presents in the world mean absolutely nothing to me, unusual for someone who is usually the biggest christmas fan ever!! I DON'T WANT TO DO CHRISTMAS!!!!!!!!!!!!! there, said it! Our boys are 11 and 14 and are really looking forward to it so I will do everything to make it special for them as they totally deserve it. I understand that we have to make this special but I have no idea how and that really frustrates me, I will do it and anyone who choses not to share it with us loses out! You are so right, We are The Carers and let's not plod, let's march with our heads held high as we face every day with re-newed courage and determination that cancer may bend us but will nerver break us!!! Big hugs to you xxxxxxx

  • Jeanette, sending you a huge ((((hug)))) right now, it's ok to wish Christmas wasn't now, honestly......

    Lots of love,

    Helen xxx

  • Oh I feel the SAME way...scrub it already......and after I wrote I forgot to say the most important thing to me: whatever you do, no matter how large or small, decorated or not, will be a good memory as long as you, your husband and your boys are together.  Anything else is frosting. Ones who do not elect to share will miss the most meaningful time of all: not Christmas, but togetherness.  You rock, you can do it, and you will....in love.  XOC

  • Maybe because I'm a bloke in a all female discussion, but....

    ...I'm willing my in laws to forget about Christmas! Hardly a day goes by without her mum asking my wife what she wants to do for Xmas, grrrr. Can't they get it into their heads she doesn't know!! At the moment its very much one day at a time,

    I really don't know what is so difficult with that, if she's up to it, on the day, I can cook a big dinner, and everybody can come round, if not, well,  we can have a small dinner and they can see to themselves. If I'm being unfair to them, what they really want to know is is there somewhere to stay and they can all get drunk. Her brother and his wife cancelled their xmas plans (her cousins wedding) much to the annoyance of my wife who wanted everyone to carry on their life as normal since her diagnosis. She cried for days when she learnt her mum n dad had cancelled their summer holiday after her diagnosis (the cancer was back and now terminal) in August.

    My step daughters are both working shifts Xmas day and/or boxing day so there will not be any big parties or late night drinking anyway. The real fun of the day will be the 22mo granddaughter opening her presents and that won't take long, lol!

    Families, eh?

    ;-)

    Angus

  • Hi gus. Aren't people just infuriating at times. Especially family who really should know better. Your wife could tell her mum to make a healthy donation to your wife's favourite charity, or sponsor a polar bear or meerkat or something. I doubt really whether your good wife (or you) really give a monkeys, but at least something like that would be a useful, gift, that will keep on giving. Tell the family that they really need to make their own plans for christmas day, and that although if everything is ok, they will be welcome to visit, how about they take over in the kitchen, let you and your wife have some precious time together, they will need to make their own arrangements for accomodation. Focus your attention on your granddaughter, what a lovely age to be at Christmas, Take care xx