Family in denial

Hello Gemmywemmy. The oncs do know their onions and do their best to keep us alive. If you judged their views on all of our prognosis on this forum you will find fhey are a long way from being on the money. I know a few unfortunates who have left us but I know far more who are booking up holidays, buying cars and generally having a fine old time. If you feel well that is a good thing, when you feel awful then maybe its worry time.

My family all think I am going to be here forever, it is impossible to be blunt with them, I do mention now and again that there is unhappiness around the corner but they prefer their own version!

I have probably not put your mind at rest but you will get practical advice from others on here. Best of luck, we will be swapping messages for a long time yet!

Hi Gemnywemmy,

Luckily, most of my close family have accepted my prognosis, which is very helpful for forward planning and practicalities.

My mum doesn't accept it at all however, which means that it's impossible to talk honestly with her about the future. It also means that I tend to try to protect her from bad news and sugar coat my symptoms. As you say, this can be very stressful.

Ultimately though, I tell myself this. It is not my responsibility to help other people reach a place of acceptance. Whether they do or not is not going to change anything. I also try to let people deal with it in whatever way suits them best, and if that's to stubbornly stay in a state of denial, then fine, it just means that I can't have an open discussion with them.

Much love

Stuart x

Thanks Norberry,

You're very kind and yes, I hope we'll be swapping messages for a long time yet.

I know what you're saying, but (the rational/stoic/negative??) part of my brain says "well, the ones that beat the odds are the only ones left here to tell the tale...". I can't get myself out of that mindset, at least not yet anyway.  

I need to work harder on living in the moment etc, but I guess I'd feel better equipped to do just that if my family took their blinkers off.  Bless them

Hi Stuart,

Gosh, you and your family have had a lot to go through in such a short space of time.

My dad in particular sounds like your mum.  I can't even bring myself to tell him that I'm starting chemo again, although I know I'll have to.  Tomorrow....or maybe the day after....

It sticks in my throat that I only feel that I can communicate positive points but not expand wider than that, so I'll say I'm not in pain at the moment but not mention that is only because of the excellent palliative care I am receiving from my local hospice.  The last paragraph of your reply is extremely wise and I'll keep that in the forefront of my mind.  Thank you x

How are you getting on with the slow release morphine now?  I started on it a few weeks ago and felt a lot better for it.  Certainly evened out the peaks and troughs after I'd been relying on codeine for quite a while.  Codeine made me sleepy for a couple of hours after I'd had it, but then I'd just be waiting in pain for the hour hand to tick round and round until the next dose.  Not nice.  

Hi Gem,

We're still at the fiddling about stage with my MST I think. The district nurse and the hospice doctor said to keep taking paracetamol every four hours and to supplement that with oramorph as required. I have to note the oramorph I take so that they can adjust the MST later. It's frustrating to be honest, and the temptation to just knock back a couple of cocodamol is sometimes too strong 

Try not to let other people's reactions stick in your throat, at least not for long. If they want to deny, obfuscate, and delay, then fine, just smile and wave. You mention stoicism, is it something that you practice? Bear in mind that your parents are always going to find it tough to face up to losing you, if you can acknowledge that and move on, then it won't stress you so much. 

One odd thing I have found out recently, is that my mum will talk to my wife about death and the future, even though she won't talk to to me about it. So that is one way that we have to get the truth through to her. Maybe you have someone who is trusted by both yourself and your father who could have a few words. 

Much love 

Stuart x 

The thing is Gem of course there must be an element of luck to it but research is happening everyday and amazing things are being found and done. Luck is now a smaller part of of it, trials and new drugs or ways to use old drugs are leading to a lot of hope in our little community.

So says Prof Norberry. Xxxx

Your parents will find it hard as you are so young.

you may well have longer than 9 months. It is not an exact science. My oncologist told me 2 years and that will be up in October . After more recent scans I asked him again and he said it could be months or years in other words he doesn’t know.

different cancers can be more difficult to predict.

you I think should keep reminding your parents and grandparents that you have metastases and they are not going away and you need to make sure things are in order such as your finances, will etc.

I have accepted my diagnosis and so have my family. I make all the decisions such as refusing chemo recently and saying I will have the radiotherapy offered to stall things a while. But only after the summer is over because I want to enjoy the summer. My husband is not keen on me having radiotherapy again because it was tough last time. My daughter is really pleased I have agreed to it.

I seem to be refusing a lot and have also refused an operation to straighten my eye offered by the eye hospital. I have lived with a wonky eye for the last 2 years anyway.

i hope you  have longer than 9 months. I think short term and am concentrating on enjoying the summer and seeing lots of my family and friends while I am feeling relatively well 

love xxx

I had that with various family members when I had told them I was incurable every op or treatment they were saying so has that got rid of it. In the end I took to just bluntly saying no it may buy me more time but I am dying. They all seem to get it now and never ask if it’s a cure anymore. I now have an in law that keeps telling my wife I’m not taking it seriously because I joke about being a dying man to get my wife to go to the bar instead of me lol

Hello Gemmywemmy. When I was first diagnosed my husband and my daughter both refused to take on board a terminal prognosis, but I patiently determined to outline to them my research findings in a very matter of fact way, until it slowly dawned on them. I've always been able to talk to them in an honest fashion and told them I'd accepted that I had terminal cancer and that I needed their help to get the best out of what time I might have.

Initially I had no real idea about how long this might be. Initially, things were very dark and I was essentially sent home to die, after two months in hospital They and I thought we were much closer to what I thought of as the 'end game'. But now, following a clear CT I've been handed a life extension, as I see it and that's how they now see it and of course react accordingly. They think of this latest news as a 'bonus' and help me to get the most out of it with treats and extra visits etc. This has now become their focus in helping me create good memories and in turn making such practical arrangements has helped us all.

I therefore hope you have many 'life extensions' too. It happens. Meantime, make good memories.

Good luck to you. RD x

Hi ,

As you can see, your problem is one shared by many of us. The fact that cancer has become more cureable in many cases, has led to the belief that all cancers can be cured, and so more people unable to face facts that stage 4 metastatic cancers are chronic conditions that at some point become terminal. None of us want to face that really but we also have to be realistic. Your family may be trying to protect themselves from the truth, and at the same time they believe they are being "positive" for you. Wouldn't telepathy be a help in understanding each other! I can only commend Galilee's position - you dont have to be responsible for everyone else at this point. Hopefully you can have real conversations with those who can cope, and have to grin and bear it with those who can't.

x