I'm sure you'll be fine

Hi floral,

I do understand  how you feel.....this is such a shock for you and such a worrying time, that friends who haven't  been in your situation have no idea. It doesn't  actually  get better a either.....after nearly four years some of my friends think it's  all over and don't expect me to still have bad days or problems  the treatments created. I found I also changed some of my friends during the treatment. People who I never expected to care gave me amazing support whereas the people I thought were friends lost empathy long before the chemo and radiotherapy  finished. If only I had been in a position to ' pull myself together  and get over it!  Don't  they think I would have if I could have done. If people can't  understand what you are going through.....perhaps it's  time for a change? I remember reading very similar  posts many times over the three and half years. We are not alone.

However, I have always wondered what I would have said in the early days to a friend if the position  had been reversed. I'm not sure I would  have found the right words.I am sure I would have tried to be supportive later on....I am someone better at helping than theorising.....but in the beginning....would I have said the wrong things. It is the same on here. We all know that in some circumstances,  it will be impossible  to recover. But I always feel it is not unrealistic  to point out to newly diagnosed people that modern treatment  really does have a high success rate. There are new drugs all the time. There have been changes since my own treatment and so far, I am still  clear. So, I think we do have to give our friends a little leeway at the start.  Maybe we should tell them that we are scared. Tomorrow  I have an oncology  check. I am just as scared as the first time......there is no reason but I'm human!

You have made a really important point about the understanding  of our present situation. Thank goodness for this site where we can rant, cry, share, ask questions,laugh together. 

I see you have results this week so I'm  hoping they are good ones for you. 

Love Karen

P.S. In the event of enduring your next rant.....I am hoping all goes well for you over the next few months. It could...........

Thanks Karen. I've been living with cancer for 14+ years now, so you'd think I'd have got used to the comments by now lol.

I reckon my friends actually don't know what to say - after all this time -  when I'm waiting for yet another load of results. I always get tetchy in between the scan day n my clinic appointment n made the mistake this time of booking the scans a whole 2 weeks before I get the results. Silly moo!

• Good luck with your oncology check tomorrow x

I understand what you mean.  You replied to me on another thread.  I attend my sisters scan result appointments and whilst your waiting to be called in is just the worst as like you said you never know what you're gonna be told.  I've had to help get my sister off the chair before as she just couldn't get up out the chair.  It's not until that time when we are outside that door that I think she realizes why she is there.  

I know her friends that she has left just say the same as you.  I just dont think she know what else too say to be honest.  

I hope you have someone going along with you Tuesday.  The more ears the better I say. xxx

Yes, I'm lucky my husband always goes with me , to write down the answers to any questions I  might have. He's v good like that. He has  to drive me anyway as my licence was taken off me after my brain tumour (:secondary)

Thanks x

OK,here's a little rant.

My friends n  family  have all  been very supportive over my latest CT results, which were disappointing but not life threatening, thank goodness.

A node near my windpipe's grown by a few mms, it does that every so often,. The main change is a new lesion in my abdominal area, which has doubled in size in 5 months, only from 6mm to  13 mm.

No symptoms from either so they will monitor me 3 monthly as usual.

So why do I feel so down about it?!

Guess it's because things've been stable for so long n coz I'd a v tiring day yesterday.

Rant, rant, rant    .. 

Hi Floral Woman,

If you’re anything like me, it’s the reminder of our mortality that gets me down. I am on 4 monthly check-ups and a week or two either side I start deteriorating mentally. For me, there’s also a bit of PTSD going on. Having to walk back into my place of nightmares (ie, the haematology department) serves as a reminder of times I’ve become very skilled in burying away. You’ve been doing this for 14 years so a lot longer than me, but I reckon it wears us down after a bit. But I always say the down moments are temporary. Distraction has always worked best for me, getting on with stuff, filling the mind with other things, it normally helps until the scan / clinic is not front of mind anymore.

Hope you can switch these thoughts off soon.

Greg

Yes, distraction works well for me too. Eng v Aus in World cricket cup semi is a good one. I  can only listen, not having satellite TV . I'm  an  avid reader, so that's another. The down moments are temporary, it's true. Knowing they're still keeping to 3 monthly checkups is a boost too. They're obviously not that concerned, so why should I be?

Hurray, cheered myself up!.Will enjoy rest of this bright sunny day now 

Thanks Greg. Hope your day's going well?

Hello, I  have just found  this room so popping in to join the rant on unhelpful things that people say.  I am partner to person Terminal since April 2018 and going downhill rather fast. My  favourite contributions from friends. I keep a mental top ten. 

"We all have to die sometimes, he just knows what of and roughly when & how." sometimes accompanied by "we could all be hit by a bus tonorrow" . It's nice that they feel so positive. 

"Oh you both over think things so much"  in response to him going away to think about dying and me feeling suddenly like it was a death/grieving rehearsal.

"I expect you think that  and feel......". The Mind Readers.  how do they know what I think and feel. They know more than I do.

"My friend has that, so this will happen"  I call these ones Experts from One Experience . Really tedious.

" what about, why isn't whose doing, what tests, why, who how, when,"  The Interrogators. People that would make good interrogators to break a peosn down into false confessions or saying anything..  

"So why arn't they doing....."  The Lay Cancer Consultants ir the one person Expert Team. .  If the experts are unsure, it's lucky that they are.

"And how  are you doing...." but said in a sort of sickly voice with a head tilt and eyes of a baby deer.  Trying to squeeze emotions out of me when I need to hold it together.  

"What's happening.. " like I am a news channel for my partner. ... ask him.

"You're both doing so well... " They don't see the bad days, or how fast I can neck a bottle if wine on occasions .  Closely followed by The Health Police. ....

"You must look after yourself...."  The Health Police,  when I would value them saying  that they have a couple of bottles of wine and are coming round. 

I've enjoyed listing that lot. I'm  looking forward to more. 

However,  I do value and appreciate my friends so will take some responsibility for taking these a bit in the wrong spirit when they mean well. 

Thank you. 

Oh this is SO true lol.

I especially like "And how  are you doing...." but said in a sort of sickly voice with a head tilt and eyes of a baby deer.  Trying to squeeze emotions out of me when I need to hold it together. " 

I definitely value and appreciate my  (true) friends. Many of the statements you cited I find are from ppl who I don't regard as true friends...

Dear fl0ralW0man. Thank you.

I am hoping that the people who are a little off beam with what I need now will come into their own at another time.

I have an Inquisitor on hand to help me with after death practical support. I have another " oh you do over think it"  coming to mop my floors every fortnight .  And the health police on the look out in case i loose it completely. .  Aside from a partner dying I have a mother with dementia and a brother with schizophrenia so am tapping into what ever I can as no other family to help.