Likely pancreatic cancer. How do I tell my mum that I'm probably dying from the same thing that killed my father?

[Earlandmrsgrey]

As the title says. Been suffering with bowel problems/pain for sixth months. GP decides it must be IBS as bloods are fine, it's not coeliac disease and multiple fit test are negative. I'm not sure and carry on in more and more pain until I eventually feel a lump just under my ribs on the left. Have to wait ages to see another GP but he has a feel and sends a referral straight off for an urgent ultrasound. Ultrasound results show hydronephrosis of the left kidney with a possible tumour and more worrying of all is a mass in the tail of the pancreas.

I've not seen anyone else yet so still early on in the diagnosis but I know it's not good. I've been feeling more and more lethargic, I'm in more and more pain, my back is agony and I'm losing so much weight.

Fifteen years ago my beloved father had the same symptoms, he knew he was dying months before diagnosis and I was the only one who believed him. Eventually he got the diagnosis and lived for another fifteen days. I think I have longer than that as I'm still functioning fairly well but I know the outlook will be poor.

How do I tell my mother? I spoke to her a few weeks ago saying that I was unwell. All she could say was "please don't let it be the pancreas." I just want to protect her, that's who I am. Always the one to look out for others before herself. Then there is my husband who is not one to cope and then my young adult sons.

So sad.

You said you were losing weight - an extra 3 kgm gone now. Maybe some new clothes to celebrate? They could at least have done a photo of Gary for you!

Prognosis will always depend on things like age and how fit you were before this. If you've never smoked and you seem to like walking/ have done pilates then whatever the odds are you're likely to be better than average.

Fabulous trip to Pembrokeshire doing a lot of nothing!! Lots of coffee shops, browsing for gifts and charity shop rummaging. Also lots of wind and rain...but that's West Wales for you in winter!!! Now on the long journey home again.
It was like going back 25 - 30+ years to when we were students and then young adults finding our ways in the world in a house share. Comfortable just chatting away and equally comfortable in silence. Feel a lot better and more ready to face the world and the future.

Another best thing....she breeds alpacas!!!

You sound fab @Earlandmrsgrey everytime I see my son in Belsize Park I walk past the Royal Free and you and Gary come to mind!! X

So lovely to read such a fabulous update OP - sounds idyllic. Nothing like a bit of West Wales to boost the spirits. Love the alpacas too!

I love Pembrokeshire, reminds me of my childhood holidays. Glad to hear you had a lovely time x

Great to know you're recovering so well....I think your positive attitude helps a lot... loving the updates xxx

Thank you for the update. A change of scenery had elevated your mood.
Btw, the photos looks lovely. x

How are you doing @Earlandmrsgrey

Thinking about you ❤️

Still thinking about you @Earlandmrsgrey ❤️🥰

Thinking about you. xx

I wish you good health, peace and happiness.

I'm still here.

A quiet Christmas which was just what I wanted, minimal decorations, minimal fuss. New Year was more upbeat; Round the World celebrations with some fabulous food and drink contributions.

First scan was yesterday, a snowy walk up to UCLH with a good friend. Then followed by lunch and a damp and grey walk back to Waterloo. No idea when the results will be in; sarcomas always take a little longer.

Today I went back to work. I say work...it was more like a catch up and a gossip with everyone! Work are being very supportive and it will be a very gentle return. I am lucky to have such wonderful colleagues and a lack of pressure to just fall back in to the job. I only did half a day but I'm exhausted from it. Only work Mon-Weds so not due in again until next week.

Physically I continue to do really well and my pilates instructor is coming round tomorrow to start beating me back into shape with her bag of balls and bands. I've done a few Parkwalks but I'm not a fan of the cold and Mr Earlgrey struggles to get me out from under the duvet on a Saturday morning!

Mentally is not so good. There really isn't a lot of sarcoma support out there and in a way (which upsets me even more) I'm envious of the support and understanding that many carcinoma sufferers can easily access. I feel like I don't fit in to local cancer support groups and it's very lonely. For healthcare professionals I seem to be a source of endless fascination...most GPs will never see a sarcoma case in their entire careers (let alone a Retroperitoneal leiomyosarcoma). I thought I'd found a sarcoma support group in Southampton but it's not currently running. My next nearest is either Bournemouth or back up to London. If the results of this scan are good then I would like to spend some time to help raise Sarcoma awareness.

Stoma is great, no problems with that. Love a bagless shower, just sometimes I need to give the shower an extra clean down afterwards!!! If my first 2 scans are clear then a reversal is possible. I'm really not sure I want that but that's for future me to decide upon.

Fingers crossed for good news in a few weeks, if it is then I think we will celebrate in Sorrento.

xxx

@Earlandmrsgrey.....its fabulous to hear from you. Thank you so much for posting

It all sounds great apart from lack of specific support. That's very annoying

❤️🥰

@Earlandmrsgrey glad the work return was positive. It sounds like you have a lovely bunch there.

You may be aware of it, and it's not face to face, but have you joined https://www.facebook.com/groups/lmsdr/?

Also, it's American, but this organization does a buddy programme - I don't know if you have to be a USA citizen, but it might be worth emailing? https://nlmsf.org/leiomyosarcoma-support-group/

There's also a Facebook group called 'Cancer Sucks - Leiomyosarcoma' https://facebook.com/groups/573285557042465/

Apologies if I'm spamming you with stuff you already know about!

Keeping my fingers crossed for good scan results and an excellent trip to Sorrento - it is a gorgeous place.

Great to hear from you OP. Glad you are doing OK at the moment and hope that continues. I hope you are able to find a sarcoma support group. Any other Mumsnetters out there with experience of this condition.

Thanks for the update @Earlandmrsgrey . Great to hear from you, as always. 💐

Good to hear - all best wishes for good results.

@Earlandmrsgrey @Thank you for spending a moment of your time here.
I hope healthcare professionals are more aware of Sarcoma and that there are more help and support groups available.

Wish for good results xx

@Lougle thank you for sharing the links; they may help others who read what you have posted.

Everything crossed for positive news for you. You are doing amazing!!

Lovely to hear from you as i was thinking of you yesterday...
Im not sure you realise how mentally well you're sounding.... such an inspiration to all.
Keep going.... and you'll enjoy sardinia
Xxx

Lovely to hear from you and all you’ve achieved. I hope your return to work continues well.

I wish you all the very best with your test results ❤️

Sarcoma uk have a phone line, I think. sarcoma.org.uk/ Is the McMillan soft tissue sarcoma forum any use? https://community.macmillan.org.uk/cancer_types/soft-tissue-sarcomas-forum?infinity=ict2~net~gaw~cmp~G_PS_COM_BND~ag~~ar~679391152990~kw~~mt~&gclsrc=aw.ds&&infinity=ict2~net~gaw~ar~679391152990~kw~~mt~~cmp~G_PS_COM_BND~ag~DSA+2025+COM&gad_source=1&gad_campaignid=20470070833&gbraid=0AAAAADmBGBGDXjZi_kE0byITCgEe8ZCMv&gclid=EAIaIQobChMI_KzN5I__kQMVCZhQBh0UzAt4EAAYASAAEgJmXPD_BwE

Great to hear your update and that you are being so honest about how it feels and so capable - and you are!

Hope you get a fab time in Sorrento. X

How are you doing @Earlandmrsgrey ?