Stage 4 cancer

Hello Espanola,  I have just been the same way as your  mum  except no stage was given. I have cancer in both lungs and a possible elsewhere , have undergone biopsy & radiotherapy  with possible further treatment proposed. I am younger than your mum but a pensioner none the less   so I feel your mum has made the right choice  some of the treatment is heavy going. It also impacts on the family and causes other problems , if you talk to a cancer nurse they understand more.  Best wishes with coping with your mums choice.  

Very sorry for your Mothers diagnosis I’m afraid she has made the right choice for her body and can see out her late years in comfort as I’m say very sorry xxx

Sorry to read this Espanola. I guess you'll have to accept her wishes, as hard as that may be, but it may be that she's more amenable to considering certain treatments when she's had more time to think and doesn't feel pressured. Maybe some of it is also fear of going on an unstoppable unpleasant path, where perhaps she could be reassured that she can say 'enough' at any time. It can feel a little like being on a conveyor belt where you only have one chance at the cuddly toy and I'd like to think that this isn't the case if we speak up. Not always easy to actually contact professionals though, I know. Only you will know if it's worth hoping to discuss and enquire more or if she's just decided it's a big fat no and won't budge. Similarly, only you will know how open and direct you're prepared to be with one another about the final months and weeks, which are hopefully some time away yet. If those kind of conversations can be had, albeit they may be tearful, maybe that then names the elphant in the room and the conversation can move to 'right, what can we all do to love and laugh together while we can?'

I mean this very genuinely - I so hope that your Mum has a secret wee side that will shock and delight you. My Dad didn't die of cancer, but I moved in with him when Mom was ill (and then died) and stayed through his subsequent illness and it was a treasured time that still makes me smile now. He was generally so 'proper'. His biggest fear was 'some 17 year year old wiping my arse' and I told him that my new biggest fear was a 43 year old wiping his arse!

Not at all sure any of my babble is helpful, but it is meant with kindness xxx

Kate

From experience I can say it is a huge shock going from feeling well to being told you've got stage 4 lung cancer in the space of a few weeks. I can understand where your mum is at. What I would say is that it would be worth finding out if she has a cancer that is amenable to targeted treatment as it is a lot better tolerated than standard chemotherapy. Mine was diagnosed with a special blood test that gets sent off to the Marsden and I also had a lymph node biopsy taken via bronchoscopy (not nice!) and pleural fluid samples. I started on osimertinib for EGFR positive cancer about 5 weeks ago and went from feeling at death's door to getting my life back. I don't know how long it will be effective for but there are people who've been taking it for years. I take one tablet a day, and have monthly blood tests. and have had minimal side effects.

Hi Janny

Im Jools and was on here looking for others on Osimertinib and came across your post. It’s very reassuring to see you were having a positive experience with it and I was wondering how you were doing on it now. I’m asking as I’m getting started on it tomorrow along with Denosumab injections for my bones and the side effects sound quite ominous although I’m hoping I won’t get too many.

I was diagnosed in January with NSCLC, T4 N3 M1c (I know right) and I have high hopes for this therapy as I’ve read good things for cancer sufferers in my precarious position. It really is a scary road we’re all travelling isn’t it

I really do hope you’re doing well and I’m sending positive vibes your way

kind regards

Jools

Hi JoolsI I’m stage 4 as well with the ALK Positive gene,I was diagnosed in October but doing great with my 6 month scan looking very good so its onwards and upwards,at first it was very hard we just cried all the time,but now very positive and enjoy every day hopefully for years to come Robert

Hi Robert

it really is  isn’t it. I totally relate, we were exactly the same, me, my husband, my kids, we literally went to pieces, my daughter was inconsolable, it’s like a literal bolt out of the blue and the most life changing thing that can happen to any of us (I set aside the devastation of losing my parents) to be told you have incurable, inoperable cancer but with a bit more knowledge we got past that stage and are now filled with hope knowing that this targeted therapy can really turn things-around all be it temporarily. It certainly makes you look at the world in a different way being faced with your own mortality. But we can do this Robert, we are strong and we’re going to kick cancers butt. 

sending lots of positive vibes your way

onwards and upwards as you say,

Jools