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Cancer in my family. Scared and left in the dark?(8 Posts)
About 6 weeks ago my parents told me that dad (early 70s) had been for a colonoscopy following an abnormal bowel sample. He'd had no symptoms at all. He got my brother to drive them to hospital as he'd been told he couldn't drive due to the sedation. He told me he was only telling me what had happened because he'd had to tell my brother so he could drive him to hospital.
Immediately after telling me this mum jumped down my throat with "Don't you go telling anyone about this!" as if that's what I was going to do. She's always like that, even over trivial things. They are both quite secretive about people "knowing their personal business". It annoys me because it makes me feel like they don't trust me and I am hardly going to announce it to the world. It also makes me feel pushed away.
Since then, he's had various scans - CT, MRI and a PEP(?) scan (the PEP scan came the day after he told me the diagnosis news), with a horrific wait to find out what was happening. It took a couple of weeks to get the results and I asked mum if they'd heard anything and got a glare and a sharp "No!" A few days later dad told me his diagnosis and I suspect mum was lying to me about not having heard. Although horrible to find out it was not as shocking as it would have been had I not known about the scans and tests that were pointing to this result. I remained calm in front of my parents. I asked if it was contained in the bowel and he said there was "a couple of 'spots'" on his liver. He said he'd be getting keyhole surgery to remove the tumour in his bowel in a couple of weeks.
That was over 3 weeks ago. Since then we (my brother and I) have heard nothing. I asked mum last weekend if they'd heard anything and shouldn't they be chasing it up and again got "the look" and she said no they hadn't heard and acted annoyed that I'd asked and changed the subject.
Of course, the waiting is horrible as is the sinking feeling that we're not being told the truth. It's very stressful for us too, we're unable to concentrate at work. My brother works long hours away from home for weeks at a time and is finding this very hard to deal with, the mind goes to very dark places when you've got lots of time to think. I just hope they're not keeping things from us, we're not little children and knowing what's going on, even if it's very bad news, would enable us to process things and move forward/offer support.
I saw them tonight and didn't ask any questions. They were engrossed in the tv, business as usual. Usual laughing and joking about silly stuff. I was texting my brother while I was over and he said he's going to phone them at the weekend because it's been ages with no news and it's driving him mad. Surely you'd chase it up, it's not an ingrown toenail.
I don't know much about medical stuff but what are the chances he'd still be waiting on a surgery date for cancer nearly a month after diagnosis after being told it would be a 1-2 week wait for surgery? Or is this kind of thing normal?
Could it be that your parents are having difficulty processing whatever the news is and are burying their heads a bit?
They don't have to share any news with you, but if the issue is that they don't know how to do it then your dad might be able to give permission for his contact nurse or similar to explain the diagnosis to you.
You and your brother could tell your parents what you've said here about worrying and wondering what is going on.
The waiting feels awful, DH had bowel cancer and following diagnosis there were various other tests, CT scan, MRI and PET scan. Between diagnosis and surgery was less than 2 months but it depends what type of surgery, surgeon available, if there are other surgeons to be involved or other tumours elsewhere, and his general health if there is any preparation needed.
It's a shock for you 💐
I know this is very hard. My brother chose to tell none of us about his Cancer. His wife and children knew and a few extremely close friends. We all lived away from each other and we didn’t find out for years. It was his illness and his call.
DH and myself are very private people also and god forbid we were faced with what your Dad is going through, I know we would want to keep it as private as possible.
I know you’re worried, but your mum must be beside herself and I’d probably be a bit snappy too if I’m totally honest.
You sound close to them, which is great. But I’d just let them open up in their own time.
Thanks for the replies. I'm talking to my brother right now, he's being driven demented. Saying that he'll cut short his work trip and return a week earlier. It's making me even more nervous but we're both thinking that they know more than they're letting on. Brother said when dad told him the diagnosis he asked what grading it was and was told that that wasn't discussed. Hmm. The "liver spots" makes us think 3 or 4. It's the PET scan I'm wondering about as that happened the day after dad told me he had cancer. So we're wondering if anything else nasty was discovered that has perhaps influenced his or the doctor's decision.
Or perhaps we're wrong and they just haven't heard yet and aren't bothering to chase it up.
Brother's FIL also has cancer and has had surgery. Their family are open about things. We already know our dad has cancer but it's all gone silent. So we don't know if treatment options have become limited or if he's refused surgery or what. My mother was more concerned about someone we know who ran into her in the hospital and him possibly finding stuff out/us telling people than confiding in her children and putting us out of our misery and us dealing with things as a family.
On a lesser scale, it's like when I had redundancy hanging over me for over a year and it made me really ill because I didn't know if I'd lose my job or not. Then when I did finally get made redundant my mental and physical health improved and I was able to process losing the job quite quickly and move on to looking for something else.
Brother also told me that apparently our grandpa didn't tell our dad his mother had died for THREE DAYS. And my dad was in his 30s! I can't wrap my head around that at all.
We're both very much in limbo here. If dad's not got much time left we'd want to know so we can spend as much time with him as possible and not be left in the dark.
My surgery was nearly six weeks after the colonoscopy. The doctor who did it took biopsies but told me at the time that he'd be very surprised if it wasn't malignant. The intervening time was taken up with scans and appointments with my surgeon and the pre and post op teams. I had an echocardiogram and blood tests.
They knew from the scans that there was no spread. I think, if there had been, they might have done chemo first to shrink the tumour and make surgery easier. Perhaps that's still under discussion. The hospital holds a multi-disciplinary team meeting once a week, so it's not just one person making the decision. I didn't find out the stage till 2 weeks after surgery. There's only so much they can tell from scans. They'd need the path results to be sure. Lots of people have benign cysts on their liver. Perhaps that was what the PET scan was for.
As to your parents' behaviour, I agree that it must be incredibly frustrating and hurtful. From their pov, perhaps it makes it more real if they have to talk about it? They want life to go on as normal for as long as possible?
I've no advice on that I'm afraid, but for you.
I am so sorry you have this worry.
My mother in law, when she was about seventy, was diagnosed with colon cancer and had some metastasis in her spleen. She had the primary tumour and spleen removed a few weeks later but no chemo which, thankfully, was not considered appropriate. There was no recurrence. After five years of regular colonoscopies she was pronounced clear (the medics never actually say 'cure').
In her eighties she had breast cancer which was shrunk with Tamoxifen. She lived to a ripe old age and, frankly, other health problems were far more troublesome than cancer.
It is a blow but the fact is cancers grow far more slowly in older people and many survive for a long time, eventually dying of something else. It is not the killer it once was.
Your dad sounds as though he is handling it well, the important thing is that he feels OK.
I too have come across people of that generation not wanting to share such diagnosis, keeping everything hush hush. When I was growing up just the word - cancer - was not uttered. My mother was terrified of it and would freak out at the mention.
I send my wishes that your dad receives a decision about appropriate treatment soon and stays in remission for a very long time.
This is for you .
I’m so sorry, a cancer diagnosis is such a shock without all the additional family dynamics you seem to be managing too.
When one of my parents was diagnosed the hospital were very clear on the plan of action and what would be happening. The next multidisciplinary meeting etc. It was the best service I had ever seen from the NHS. I would hope your parents are receiving the same level of care, so perhaps they aren’t letting on everything that they know.
There was hellish waiting involved; both for the diagnosis and while treatment was decided upon but again we were kept up to date with what we were waiting for during those times.
Thank you everyone for your kind words and insights. That's interesting that it grows slower in older people. I told my brother this because he was still freaking out about things so it set his mind at ease a little. But we were still none the wiser about what's going on.
However, his MIL spoke to my parents the other day and asked if they'd heard anything and mum said no. She also said she's been nagging dad to phone up and find out what's happening with his surgery date but he won't do it.
Then last night I tried asking myself and when he said they'd heard nothing I said he should call and find out and he got quite annoyed and told my mum she must have put me up to it! Which wasn't true at all, it hadn't even been mentioned. I told him that we all worry.
But that was the end of that conversation, he suddenly became engrossed in his phone. My brother said we should just back off now.
Hopefully he hears something soon if he's not going to chase it up himself. It's horrible waiting but I don't think he realises we worry too.
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