Another Newbie

Hi Sara

That's a brave post to start with, and delicately put.    I was diagnosed in Nov 2021 and given 5 years.  I knew I was going to be told I had cancer before the urology consultation (I did my research and read the room) but I wasn't expecting the metastatis to the lungs or the timeframe.  

Straightaway, my outlook has been "I'm not afraid to die, but I am sad for the milestones I may miss".  I am 52. My kids are 17 and 20.    The 5 years corresponds with when my youngest will be graduating from Uni.   My first target then is to see her graduate. 

My approach is very pragmatic.  It is what it is and sh1t happens.  I am a task oriented person, so straight away I was checking the beneficiaries on my pensions and making arrangements to update my will.  On the same day, I was deciding how I would tell my family and planning a UK tour in Feb to tell them them face to face.    So far, I have only cried at home, or with my husband.  We cry less now.   Throwing myself into kidney cancer research and treatment options has helped.  I met my oncology team with a list of three preferred combination drugs I liked, and one was on their list too.  I start 18th Jan.  Can't wait!  

I also started planning my funeral, initially.  I had my minister on the list of who-to-tell and started thinking about how I would design the service - an opportunity to say goodbye was my approach with no black/mourning clothes!  I've moved away from this topic now.  It can wait until later.  

The one thing I have learned about cancer is that the only certainty is that there is no certainty.  There is therefore no point being anxious about what is outside my control.    The scientists don't know why a drug might work on one person and not on another.  It's a suck-it-and-see approach.  And I will only get progress updates after each 3 monthly CT scan, so I won't continuously know whether it is working or not.  

But equally the uncertainty can "help".  I've been told 5 years, but then the oncology team know of people for whom combo therapy has just worked over many years.  Perhaps that may happen to me.  Perhaps I will reach target 2 which is age 60.  

You can't change the past - but I look back on my past and am encouraged by the time I have been able to spend with my children eg my eldest buys a flat and moves out on Friday.  I am so grateful that I have been lucky enough to steer him into being an independent  adult.  

We are all different and view life through different lenses - my aspects could never be "applied" to others.  People find acceptance through a wide variety of ways and methods.   There's still time to help your kids.  My youngest is sitting exams but at the end of the month we need to tell them, and help and support them.      I took both my kids to church until the buscuits and friends weren't sufficient motivation.  None think it's likely there is a God.  It's their choice and I accept that.  I'm sad for the grief they will go through when it comes, their weddings I'm unlikely to attend,  but I hope the openness and discussions in the time until then will help soften the blow and prepare them.  

 
Claire xx

Hi Sara

I think it's entirely normal to think about death when in our situation - I am only a couple of years older than you (57) so also wont make that care home I had my eye on!

I find comfort in knowing that even if I'm not physically present my legacy will live on in the lives of all those remaining .

I am very much like claire who also posted in that I have always found solace in dealing with things that I do still have control over for now 

Take care will speak again soon

Sally xx

Hi Sara. You have two very good replies here already.

I can address just one point with absolute certainty.

You won't worry perpetually . Gradually this stuff you are dealing with will take a back seat and more of your current life will come to the fore to be enjoyed again.

Of course you won't believe that now but it will happen. You will stop going to sleep worrying. You will stop waking up worrying.

We have all experienced just what you are going through and we are not screaming out of the window. You can do that to help now and again but you will not need to. You will come to terms with it. 

Who knows whether you will make old bones? No one on here and no medical expert either. Mr or Mrs God perhaps. You will gradually relax a bit and your body and mind will settle.

Best wishes. Xx

Thank you. I go through phases of this. Have been living with cancer 2 years plus and incurable about 9 months but I guess the bowel black thrown me as potentially changed prognosis, need to see how treatment goes. Just feels very precarious at moment I guess. Thank you xxx

Thank you for replying. I think I am struggling at moment especially because after my bowel blocked it all feels much more precarious. I guess I was steadily going through treatment and then have an acute episode. I really just want to find spiritual acceptance and peace/ calm . Think I have done all I can for my children, made them blankets and memory books. Also my husband and other people on my life . I do love the notion that even if you don't live on physically then legacy lives on. Thank you xxxxxxxxxxxx

Thank you Clare, like everyone here I am so sorry we are all in this boat. You sound like you are coping incredibly bravely and sound very wise. I am quite pragmatic and have addressed practical issues, it's more the spiritual side I am struggling with. I guess that this is a matter for us as individuals to resolve. Thank you and as with everyone here hope your treatment goes well xxx

Is it generic spirituality?  Or do you already have some belief or faith?    I became very cross with the church in 2014 after the independence referendum.  I am in Scotland.  I stopped going to church the day after the result.  But I recognised I was cross with the organisation because of my perception of their strategy during the campaign.  I was not cross with God.  I did not feel I had lost faith.   

I have started watching (or stalking!) my local services online (advantage of covid)!  

My husband is an atheist and this has sent him further into the that space.   There is no god that would allow this to happen he says!     

I'm sure there's support out there to discuss spirituality in an appropriate setting.  I know the Christian church do Alpha courses.  Have you tried phoning Macmillan - perhaps they have some pointers?  

Also, have you seen the  <Religion, Spirituality and prayer> group?  

Hi Sara, 

You've posted a very clear picture here, and seem to be addressing the practical issues with a clear focus on what is right for you and your family.

I also find the mental health side much more difficult, particularly the three month cycle of scans and results.

Spiritually I travelled from faith to agnosticism to atheism long before my diagnosis and although I do sometimes miss the faith community I am firm in my belief that the only things that will remain of me after death is the memories I have created with family, friends and community. So I try to be a good mother, wife, friend and neighbour, I often don't succeed as well as I'd like but I keep trying. I hope that the example I set is good enough, especially for my children.

To help with my mental health I have recently reached out to my local cancer care centre, they have offered various courses and workshops to help with sleep and relaxation and I'm going to try a few sessions of hypnotherapy.

Best wishes to you, I hope that you manage to find a way to help you through. 

Thank you. I'm going to look up the spirituality group and may be the alpha course. Sending love and hope xxx

Thank you for your reply. You are all very kind as a group with wise words.  am sure you are a very good mother, wife, neighbour, friend etc and will be remembered as such ( although hopefully not for a long time) xxx