For people who read my last couple of blogs, they will know that my son was diagnosed on Monday with a large (11cms) tumour in his left side near kidney and bowel. We saw the surgeon yesterday, and the date for the op is 29th June. It will be a massive op - and we all came out of the hospital feeling pretty hopeless.
But today, I want to talk about support. Now there's one thing about me that can be good - but can also be bad. And that is that I'm very honest (but not rude) hate bullshit, hypocrisy, and people that talk the talk, but then fail to walk the walk.
When I was diagnosed with an incurable (but slow-growing controllable) cancer last year, I (and my husband) were shocked and disappointed by a lot of people's reaction. People who we thought were close friends were deafening in their silence.
I understood that they didn't know whether I wanted to talk about it or not. I understood that they were embarrassed, or awkward. So many times I heard 'Well, I didn't know what to say' from people. And so often I heard '\If there's anything I can do, just let me know'. And when we asked some small favour, they were busy, or going away etc etc.
But now, my 24 year old son has been diagnosed with a massive tumour, (which is an inherited form of cancer) and I'm really shocked, and yes, angry, at how people, friends and family, are reacting. Only last weekend I sobbed on the phone to one of my close (I thought) friends - she said 'I don't know waht to do, whether I should come round and see you, or leave you alone'. And I said 'No, I really want my friends to come round - I need to cry together, get drunk together, talk etc', and since then, I've heard ...... precisely nothing. Another 'best' friend has sent me a couple of text messages saying 'ring me if you want me'. And as for my husbands family, his mum was told last Tuesday, and since then she hasn't rung either my husband, to see how he is, my son, to say 'I'm sorry about your diagnosis, or ANYTHING!' I know it's very difficult for people to know what to do or say, but surely something is better than nothing? And what's the worst thing that can happen if they phone or come round? I'll either not answer the phone, or say 'I can't talk now', or won't answer the door. Is that so terrible? I know that suffering with cancer makes you more aware of acting with compassion, empathy etc, and if the situation was reversed I wouldn't care if they slammed the door in my face or put the phone down on me, so what, I'd keep on trying.
I think there are 2 types of support - emotional and practical. Years ago, neighbours used to put stews and casseroles on people's doorsteps in times of trouble. When I was in hospital last year, every night my husband used to come home from visiting me, and my mum would have left him and my son a proper home-cooked meal in the oven. When our son goes in hospital on the 26th (he has to be in for 3 days before op, cos he has to have pre-op drugs) we will be up there most of the time. We live in Kent, and the hospital is in City of London. How lovely if people thought to leave a pie, or a casserole in the porch for us, or took our dog for a walk, or came and sat with me in the hospital. Instead they are worried about 'intruding'. Maybe our friends just aren't as good friends as we thought, or maybe it's because we've been thru it we know we would act differently if someone we knew was going thru it. All I know is that my son is hurt by the lack of contact from his paternal grandmother, his maternal grandfather, (who is the gene carrier but hasn't developed the disease, and is at this moment in Thailand because he has a penchant for young Thai women). And I am so angry I could explode. Once again, it will be me, my husband, my daughter-in-law, and my wonderful mum who sit by his hospital bed. My mum, who has battled with malignant melanoma 12 years ago and so far won - who has watched her only child suffer with this cancer, and now her only grandchild. I'm sorry to go on and on, but I'm really, really emotional right now. Maybe I'm expecting too much of people? what do you think? Be honest, I can take it!!!
Jeanie x
FormerMember
and your all nutters to boot lol, i am so lucky with all my family and friends........ jo mac above is my sis, hi sis............ they have all been there for me and i have been totaly truthfuly with them, and even have them cringing with my sick jokes about my death and funeral, and even had my eldest sister come with me to book the funeral.
i did havce my oldest friend ignore me, we`ve been friends since i was 16, thats 33 years!!!!. my prognosis on march 2008 was 3 to 4 months, and i hadn`t heard from her until i got a christmas card of her........... well i was livid, steam comming out of the ears the lot!!!! lol so i rang and her hubby answered, she was at work........... so i said ok tell her i`m still alive as she wouldn`t know cos she hasn`t been in touch, he sounded a bit embarressed and said he would get in touch. turned out she had been telling him i was ok and that she was in constant contact with me!!!. well i went through her like a dose of salts... she said she couldn`t handle the thought of me dying, so i said so you`d rather just cut me out of your life now???. anyway she is better now and texts, which is better than nothing i suppose.
i think, ... people don`t like to be reminded that life is fragile.... i mean if your elderly parents die, it`s heartbreaking, but life comes to an end and they had a good long life etc..... i think when someone like me and many of us on here are ill or terminal. (let`s face it when you even mention cancer people immediately think death), they get scared that if it can happen to some one like me (us), it could happen to them......... i was 38 when i first got breast cancer, i was really fit and healthy, and full of life. so they dont want to face their own mortality, and facing you is doing that.
can i come for dinner too? but steak and chips, please and definately the wine.... sod the liver, lol.
good luck jeannie, true friends and family will be there for you, to laugh, cry and support, and even a little sillyness. and of course so are we. liz xx
Just catching up on various blogs and of course Jeannie, I am so so sorry to hear of your lack of support from friends and relatives. BUT you have WN - these guys are fantastic, the comments never cease to make me cry with laughter, no refreshing, so brilliant and so bloody supportive.
WHO NEEDS ANYONE ELSE (well maybe the hubby!)
Hope you find what you need here, I am sure you are from what you've said, love to you and your son, keep us posted.
Hi Jeanie, I understand how hurt you feel regarding your mother in-law. Mine did not visit once after I was diagnosed with cancer. She even caused a hullaballo about where to send the get well card. When told send it to the hospital, that was a problem too since she didn't know the address! My sister in-law (her daughter) didn't even send as much as a card. When I got home from hospital I did not receive one phone call asking me how I was. This went on for 6 months and I heard from a relative that my mother in-law had said she thought I'd fallen out with her. My reply was, how would she know since she hasn't spoken to me. Also, apparently she was telling anyone who asked that I was doing well etc. How would she know?
Even till this day (and I am nearly 6 years down the line) when I see her, which isn't very often as I find it difficult to forgive her for not even phoning my hubby to ask how he was (I had loads of support from my family), she has still to ask me how I am. I actually thought I was alone on this one, but having read your story and some of the replies I see that I am not.
When my hubby did eventually ask her why she had acted like this and not visited, her reply was that I had all my family around me and didn't want to intrude. Well, bullshit! I could have accepted that if she wasn't the type of person who is the FIRST to visit anybody who is ill. Still, they say actions speak louder than words, so it's pretty obvious she doesn't like me boo hoo! lol. No love lost.
Thank you for you giving me an opportunity to get this off my chest lol. I hope everything goes well for your son, I will keep any eye open for any posts. I also wish you the best of luck. Best wishes, Christine xx
