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
Hi Jeanie
Having cancer certainly puts your friends into perspective. I couldn't believe the number of people I've had to reassure when really I want to shout, 'Oy, I'm the one with cancer, bloody reassure me!'
I think I'm dealing with everything pretty well and even that upsets people. My mother was upset because I was 'too happy' so I had to reassure her that I was taking it seriously. The worse thing is the relief on people's faces when I have a bad day or am a bit weepy, it's like they feel a bit more comfortable because I'm acting as I'm supposed to me.
Planning my stay in hospital was like planning a wedding, visits had nothing to do with me and I had to make sure everyone knew so that they weren't offended by not being invited. Now it's lovely to be visited, don't get me wrong, but there's a two to a bed rule and trying to 'entertain' (and, yes, I felt I had to entertain) 6 people at once was exhausting.
Even worse is the people who 'steal' your cancer for their own ends, the 'poor me, my friend's got cancer', now I don't mind this if they're helping and supporting me but most of the time I never hear from them again unless it's for an update for them to get more sympathy.
Anyway, enough moaning, there's been good things too.
I was in hospital for 8 days and can't remember the last time I laughed so much. Once the need to reassure friends and relatives is removed and we could be ourselves and stop acting it was a blast. Everyone seemed to be having the same experience with friends/relatives and visiting time was like looking at naughty children being on their best behaviour, lovely though the visits were we couldn't wait for everyone to leave so we could have fun again. The ages on the ward varied from 26 to 80 and I'm not saying that there weren't tears, but nobody hid their tears or their fears and also didn't feel guilty about having a damn good laugh and joke. It was so nice to ask a question of someone without worrying if you're upsetting them and getting an honest answer instead of hand patting.
I also have the most amazing friend and neighbour who said, 'I don't know what to do so I'm going to do what I think is right. If I'm annoying, tell me, if I'm not doing enough, tell me' - and I do! Wish I could replicate her and send her to everyone.
For the people who don't have her and have a friend/relative with cancer can I offer the following tips:
1. If you say you're going to be there for someone please specify where 'there' is. So many friends have said this to me and I'm damned if I can find them.
2. NEVER look pleased when a person who's usually happily dealing with their cancer cries or gets upset.
3. You're allowed to have a laugh when you have cancer, it doesn't make you a freak.
4. Cancer isn't a stereotype, try not to second guess how a person's going to feel coz we're all different.
5. Don't try to be superhuman, you need support as well but try and get it from another friend or relative and not the person with the cancer.
6. Don't try to have all the answers, sometimes silence or a shoulder is enough.
7 Don't be hurt if a person with cancer finds it easier to talk to someone else rather than you, it's not personal and they still need you for other things.
8 Try and cry in your own time- I know this sounds harsh but I've got enough crying in my life without having yours.
9 IT IS NOT HELPFUL to discuss funerals prior to op!!!! (yes, this happened to me, my next of kin asked me my plans coz she wouldn't be able to afford it!!!)
10 NEVER EVER EVER say, 'Oh if only you didn't smoke/drink/eat like pig then this wouldn't have happened to you' - lost count of the number of times this has been said to me and was the ONLY thing to make me cry during my hospital stay and IT IS NOT HELPFUL!!
Sorry if this offends anybody it just worked for me and, who knows, there might be some people out there who are like me.
If all else fails try shouting, I'VE GOT CANCER, that tends to shut the buggers up!!!
I don't expect more of them than they can give, after all I may not be all that brilliant a friend. People are different. There are so many dos and don'ts, that people are afraid of saying the wrong thing. I don't think it is wrong of them. I assumed my family would care, but I don't speak to them all that much, so when I do see them, and they ask how I am, I tell them. No recriminations, no pack drill.
I ask how they are, and they tell me. We all vowed never to fight over anything important, as we saw our aunts and uncles get very upset over inheritance and things, so we just take each other at face value.
Having said that, they have been very supportive, and I have made a lot of new friends, and old acquaintances have become friends because they have been where I am, and are still here, and having people be pleased that I am still around is a beneficence.
Blessed is she who expects nothing, for she will not be disappointed. Everything that comes to me is a bonus. I happened to mention that I had finished my chemotherapy to a colleague on a committee I go to. The next meeting, they held a champagne party for me. And a very busy, hard working chief Nurse who looks after our committee made a fabulous chocolate cake for the occasion ! I have never been more dumbfounded and although I thanked everyone, I am still amazed a year later.
