Hi everyone. I'm Jo and last week my 48year old parter of 21 years was diagnosed with cancer. They came across it after he admitted himself to A&E in horrendous pain. Abdominal, lower back and groin. He had a CT and MRI which found what they initially thought were abscesses on his liver, but biopsy results have confirmed the presence of cancer. It's secondary and they originally thought the primary source was pancreas but we found out yesterday that that's not the case. So we are still in limbo waiting to find out where it's come from. I am 40 and we have a beautiful 11 year old daughter and my partner has a 28 year old daughter too. They are my rocks. My partner is on so much medication for pain, he is barely awake throughout the day and things are feeling pretty rubbish at the moment. We haven't told the 11 year old yet as I want to have answers to any questions she may have but I am dreading the day we do have to tell her.
The waiting is the worst part. My partner has been in hospital for 17 days and I just don't feel like we are getting any answers. I know they need to do the tests, but no treatment can start until we know for definite either. I just feel so lost and devestated for my partner. Just after a bit of advice from people who know what I'm going through. Just feels that I'm having my heart ripped out on a daily basis.
I have posted this on another board but thought I'd put it on here too. We have now been told that it is possibly neuroendocrine tumor of the lung. A rare form of cancer. The specialist lung team will be up to talk to us today or tomorrow to tell us what to expect from here on in hopefully.
Thank you in advance for listening to my story and for any support people can give.
I am a very positive person and am trying to keep my partner motivated to fight, but it's early days and very difficult at the moment. I won't give up though.
Love to you all xxx
I am so sorry you are going through this. It must be very worrying. When you see the lung team today, make sure they do not leave until they have answered every question you have. To focus, at times of stress, it helps to write all questions down in a notebook. If you do not understand an answer, don’t just nod but press for a better explanation. I hope the meeting goes well, and all your questions are answered, no matter how long it takes. For them it’s just time but for you, it’s your whole life,so make sure they give you the time you need . I hope too that there can be an excellent treatment plan and success.
I am a cancer patient with a cancer not known for longevity, but I have exceeded my prognosis by over a year and feel as though I’m recovering. Without my a wife supporting me, noting and asking all the questions and advocating for me so often, I am certain I would not be here. Knowledge through this is a powerful weapon and the patient finds it so hard on so many levels. It was my wife who searched all the sites and is now an expert, working so hard on my behalf and even spotting the signs of sepsis early enough to save my life, all a by-product of a compromised immune system, brought on by radiotherapy and chemotherapy and the disease itself.
My thoughts go with you
It’s a scary time for you both, waiting for a correct diagnosis. As said before, a notebook is invaluable because you get so much information you can come out of a meeting and forget what’s been said. There’s always someone here to give support, hope you get your answers today - let us know how you get on x
Thoughts are with you and your partner. We're going through the same thing, my husband is also 48, we have 3 little girls. We've just been told he has NET, pancreas and extensively in the liver. The waiting for tests is torture but as the doctors keep saying, they need to know exactly what they're dealing with which makes sense.
Hope you get a plan in place soon
Hi Jo, I totally understand what you are all going through. I rushed my husband to hospital on Easter weekend with what the doctors thought was sepsis. Five days later and many tests we were told that he has primary lung cancer with secondary liver! To say our lived have been turned upside down is an understatement. He is now on his 3rd chemo cycle and going for a ct scan on the 29th to see how effective the chemo is working. Not knowing what the future holds is so scary especially explaining that to out two teenage daughter's but we arw all trying to remain strong and positive throughout. Please feel free to contact me if you need any support or just somebody to sound off to.
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