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
It is a diffucult time when family & friends find out about tumours. My mother-in-law who is 85 bless her things it is a lump and I can just have it cut out. Just like that. I too have had friends who once have found out never heard of again. But I do have friends who have been there for me, cried with me, taken me out for meals etc. I am so blessed. Maybe your mother in law finds it just too painful to know. Whilst you and your husband have to bear it you will do, but perhaps for her it is too much. I would try and talk to her and any other people and see what their reaction is. If they don't get it just tell them. I did. Someone told me well now you have lost your hearing all it needs is to suck it out. I did put them right and made sure they understood exactly what it did mean in no uncertain terms, does it matter if you loose them? Just be there for each other, scary I know. My friend lost her son to testicular cancer 3 years ago, he was just 30 so I know how hard this is. H sought help much too late.
Love each other and send him positive thoughts.
I hope this helps, you are not alone. Sending an angel to be with you all.xx
I know exactly what you mean - people I thought would be there for me disappeared, acquaintances became rocks of support. There was no logic about the way people behaved so I can only put it down to fear or embarrassment. I think you have to spell it out to your friends and family and say, "Yes, Flossie (or whoever!) you can help by taking the dog for a walk/mowing the lawn/giving me a lift." And if they don't then take the b*ggers off your Christmas card list!
Meantime, there's plenty of emotional support here on this site.
I know it's hard and people don't know what to say etc. So give them all one last chance. Tell them what they can do to help (as Kate has said) and if they don't rally after that, well, sad but bugger them. You've got more important things to be worrying about right now.
But it wouldn't hurt to deliver a few home truths about how hurt your son is feeling. People can be very selfish but sometimes they just don't have a bloody clue.
At least you've got us lot. Sending you a virtual casserole. Oh all right then, use your imagination! It's braised beef with a red wine sauce, little shallots in it and carrots. Bloody lovely. Enjoy!
Thanks for the comments - Shelagh - you made me laugh, and its not easy to do that at the moment. I don't know why, but certain swear words crack me up. Must be my toilet humour. My mum always says 'don't expect people to do what you would do', and I'm really trying not to, honest. And I know everyone's different. But as the old saying goes - The more I know of (some) people, the more I love my dog. Not u lot, obviously. I do believe they care - I think its more about having the courage to contact us.
And I am going to be straightforward with people. Not rude - just honest and straightforward. Whenever I get to speak to them! Thanks xxx
Jeanie, I am afraid to say I went through the same thing. Four of my friends just vanished. I said to them on the phone please come and see me - zich, nada!!!! I was so terribly upset and cried buckets. I am a hard bitch in the world, but inside I am very sensitive and soft. My partner has always said to me, you must lower your expectations of people, but the cancer trip was something else. I have got over it, but it did take time and now I don't give a bollox about any of them. I stopped asking "why" and just got over it. I got through it with the help of my wonderful partner and my sister who was diagnosed with breast cancer 6 months before me, and of course my son. Looking back that was all the people I needed. I know how you feel, abandoned and alone with a desperate feeling of isolation inside. Jeannie that will go. You shouldn't have to be trying to figure out why friends and family have such a lack of sympathy and empathy - they should be there for you end of story. Shame on those shits. I wish your son the very very best with his forthcoming surgery and hope you all see happier days soon. I actually believe what doesn't kill us makes us stronger.
