Metastatic adenocarcinoma

Hi, I am so sorry that you are going through this especially at such a young age, please dont ever feel like a burden, people who love you will want to do all they can to make sure you are doing ok mentally physically and emotionally. I know too well as my 61 year old mum was also diagnosed In May this year with metastatic adenocarcinoma, (nscls) it has spread to her peritoneal lining which has caused permanent ascites fluid build up in her tummy, she's had to have a permanent drain fitting for that, it's also spread to her liver her spine and probs a few other places by now to be honest. She also has started with pleural effusion in the lung and is waiting for a permanent drain putting in her lungs after having a temporary drain and having her lungs drained. Her legs and feet have also started with edema fluid build up so struggles to walk. She is on permanent oxygen at home, but she is currently back in hospital with her 3rd bout of pneumonia. Since diagnosis its been a downward spiral and has yet to have any pallitive cemo due to her not been well. Everyones journey is different and everyones bodys deal with the disease different, i havent seen anyone on here with all the same symproms as my mum so its just everyones individual jounrney, my mum is on Morphine and Oramorph and it works well for her. Maybe you could speak to your care team about getting your pain plan sorted out for you as thats very important. 

Good morning 

I have the same diagnosis as you, if you tap on my avatar you can read my story so far. I am treatable but not curable and I took the chemotherapy route, I have continued with immunotherapy for 24 cycles, chemotherapy wasn't pleasant but I got through immunotherapy is much better, I continue to work full time although I am significantly older than you at 59. don't ever feel a burden, I'm sure your girlfriend wants to o be with you, and she deserves praise for that, take each day as it comes and never give up, you never know what science is round the corner to help

If you are struggling with pain ask to speak to a palliative care doctor they are specialist in pain management palliative care is not just about end of life as so many people think, my palliative care doc is brilliant she got my pain under control very quickly and stays in regular contact to make sure I continue as pain free as possible. I'm happy to chat about my situation if it would help you please feel free to message me. In the meantime have a good weekend

Donna

Hi,

Im sorry to hear about your mother and hope she has a speedy recovery from hospital. When I got the fluid removed from my lung the other day the doctor did mention that in future a permanent drain might have to be an option.

So you are right tbf, I do have to get in contact with my care team and speak too them about getting some sort of pain plan done.

Hey Donna,

I’m glad to hear that the immunotherapy was much better on the body than the chemotherapy and yep she definitely does :) 

Well done for still working but as soon as I got the blood clot in my leg my warehouse operative job that I had was physically impossible for me to do anymore.

Ive got a phone call appointment with my oncology doctor next week and I’ll definitely ask about the palliative care doctor because I’d personally never knew about that so thanks for the advice.

Hi Mac 

Talking to palliative care doctor about my pain was the best thing that happened for me, I was a bit scared when I was first referred because like most people the thought palliative was end of life, was I wrong yes I was. So I'm pleased to pass on this little nugget of advice, don't be afraid to talk to them if your referred.

I notice you said you had to give up you warehouse operative job, did your employer offer to work with you to find a more suitable role for you, my return to work wasn't easy my employer didn't want to help, however after some sound advice from MacMillan and the support of my union rep, my employer found a more suitable role for me, I find working helps me feel normal and get the the 3 weekly treatment cycles, my manager is brilliant and very supportive I could ask for better. Your employer is required by law to make reasonable adjustments to enable you to continue to work, if you want to. You might want to explore this a little more, give yourself every opportunity.

Your girlfriend sounds a lovely person, I hope you are both very happy and don't let everything be about the cancer, there's so much more out there and you both need to get on with enjoying life, it is difficult when having treatment but don't let that stop you, you can do anything you want you just sometimes have to do it differently.

Make every day a happy day even when the chips are down, that way you can make the best of everything, yes you have cancer but don't let cancer be your life, give it a good kick up the backside as much as you can. If you want to chat just message always happy to help and support if I can.

Look forward never backwards you can't change the past but you can influence the future.

Have a great day Donna