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
I've just sat and had my dinner - been thinking about things, and especially people's comments.
Christine the lady who commented first, is obviously a lovely lady who sees the good in everyone - hence her comments about my mother-in-law being too upset to deal with it.
I was thinking about something that happened a couple of years ago when my husband's sister, quite out of the blue, started to suffer with depression. And it was real, serious, clinical depression, you know, not wanting to get out of bed in the morning, not even bothering to wash. My husband and her aren't very close, but apparently she did confide in him that she felt pretty much abandoned by their mother, (who lives 2 minutes away from her), because she hadn't once phoned her to see how she was, and seemed to think it a bit shameful that she had it, and 'it didn't come from her side, you know'. I remember thinking it didn't surprise me that she reacted like that, and when I spoke to her, she said, and I'll never forget it - 'I can't understand ***** acting like this, expecting me to phoneand see how she feels - she can bloody well phone me, after all, I'm ill too'. She had arthritis.
When my husband and I talked about her afterwards, he has always said to me 'she's an emotional void really, doesn't seem to have any feelings'. He is so not like her - his father was a bloody lovely man, really kind and never a bad word to say about anyone. He died in 2000. His sister is a bit better than his mum, but not much. So he is well aware what his mother is like, and I know he is hurt for ourson, cos he told me.
When I was diagnosed last year, she never rang - not just me, I don't really care about that, but she never even rang hubby. He went to have a chat with her one night, and said you know, you could've been a bit more supportive towards me. She said ' well SHE hasn't rung me, you know'. He said 'you haven't been diagnosed with incurable cancer'. She agreed she had been lax and would try to be a little more communicative, and did actually ring me when one of our dogs was put to sleep!
Now you may say, well maybe she just doesn't like you! And let's be clear, I don't give a shit any more whether she does or not, I've tried with her for 27 years - but to not even ring her own son or grandson when we're going thru this, well I can't deal with her any more.
Just one other funny thing about her whilst I'm having a rant - about 4 months ago she was having her 2 nd hip replacement. Now she is a 'soap opera' fanatic. Just sits on her arse all day watching them all. We went to see her in hospital on the Sunday, and my husband said 'ok mum, I've got a meeting tomorrow after work, but I'll drive down on Tuesday straight from work (about 90 mins from his work), I should be here about 6 or 6.30. She said 'Oh, no, don't come then, Home and Away's on then'.
i have to say that since my partner was dx 4 weeks ago with inoperable cancer, we have had the same thing. people who we thought were friends have just dissapeared and the ones we thought of as just acquantances have been really good! it certainly sorts the men from the boys!
i mean just because we got cancer we still the same people? still need the same things we did before?
i feel really sorry for pople like this, i think they are cowards! probably never had anything to cope with in their lives! shallow people with no emotions-you,ve gotta feel sorry for em.
i have a sister who im not very close to but she hasnt even picked up the phone to see how we are! told my mum she might write me a letter!-a letter? just pick up the bloody phone!!
anyway i am having a barbecue in august for my partners birthday and the guest list has just got smaller lol!
anyway jeanie i wish you and your son all the love in the world and i am also sending you a virtual casserole!
Don't waste your time or temper on people who don't do anything to help. They are NOT worth it. Don't get all worked up about them - all you are doing is wasting your precious emotion on folks who don't seem to give a flying fig.
Save all these feelings for the ones around you who really matter - you know who they are!
This is the hardest part - don't let your son see you getting all wound up about these people. He may be 24 but, deep down inside, he is probably scared shitless about what's happened to him - and if you go around steaming about people who don't do what you expect them to do, he might start to think that it's all his fault.
I know we are all on the outside, but you will see from all the comments that we have all gone through the same sort of thing; friends who don't act like friends and so on. WE will be there for you - WE will help as much as we can - even if it's only sitting reading your blog posts.
Oh and finally - bugger the casserole. How boring is that? I reckon a good ten-course banquet is in order - so let's see:-
1) Appetisers of melon slices and parma ham (very 70s)
2) Iced beetroot soup with cream
3) Glazed fillets of sea bass with lime and almonds
4) Passionfruit sorbet
5) Warm salad of duck breast and shallot in a brioche cup
6) Rack of Hampshire lamb, with steamed new potatoes, mange tout and tomato salsa
7) Trimmed pork loin on pepper mash with a poached pear marmalade
8) Lemon and ginger sorbet
9) Local cheeses with home made biscuits
10) Lime and mango ice cream with sugar strings and chocolate roses
Coffee and liqueurs may be taken in the lounge, at your leisure.
