Hi Mark, I'm so sorry for the loss of your Mom. I want to welcome you to this forum where people are so caring and supportive and you don't have to apologize for ranting here. We all have had our days to rant. We understand the need to do that sometimes. I wish I had some words of wisdom to give you about the concerns you have surrounding the death of your Mom, but I'm afraid I can't. I really don't know what avenues you can take to get those answers, but hopefully, someone here can. Perhaps contacting the nurses in the category "Ask the Nurses" will provide some information for you. I responded to your post to express my sympathy about your loss of your Mom and I wanted you to know that people do read and respond when people post. I also want to say that you were a very caring son to your Mom and you were there for her when she needed you. I hope you find the answers that you need to ease your mind. In the meantime, take care of yourself and I hope there are people in your life who can support you.

Come back on the forum to let us know how you get along with this, and to let us know how you are doing.

Take care.

Lorraine 

Mark,

I am so sorry to read about what happened to your Mum and I understand why you need some answers to your questions in order to get some peace and closure over how she died.  I am not sure how you should go about getting your answers.  Her GP or oncologist would be the best people to know - I am not sure where you stand with the information being your Mums personal and confidential medical information, even though she has passed away.  I would be inclined if it was me to make an appointment with the GP and just explain that some more detailed information on exactly how your Mum died would really help you personally.  He may not be able to be specific about your Mum, particularly without a post-mortem, but he may be able to explain possible reasons for the bleeding.  I never did ask about my Dad when his cancer returned.  What I couldn't quite get over is how rapidly it returned.  I often think about having a general conversation with his MacMillan Nurse who specialises in his type of cancer.  I would like to know 'is this common when oesophageal cancer returns after treatment for it to be this aggressive' (we lost him in weeks rather than even months) or 'is it likely that the cancer had returned for some time and had never been detected until it was too far advanced'.  I still wonder about these things 2 and a half years on from Dads death, and like yourself would benefit from some more information even though it was only in general terms and not necessarily specific to my Dad.  (The reason I dont ever get round to this is that I imagine the Nurse will be far too busy looking after other patients fighting this condition and I dont want to take up her time).  I hope you get some success in finding the answers you need - try the nurses on here, there is also a very helpful online nurse at Maggies Cancer Care - she was a lot of help to me when I first lost Dad and pointed me in the right direction for getting the help I needed to come to terms with things as I really struggled for a while.  Kathryn

Dear Mark

Lucie drew my attention to your post and wondered if I could answer any of your questions.  I hope the following is useful.

As you say, the term metastatic means that cancer has spread, so I can understand how confused you must be by the doctors telling you that there was no cancer anywhere else.  Sometimes, it is possible to have what is known as an unknown primary tumour.  In this situation, they can tell from the biopsy sample taken from the tumour  that the cancer must have started somewhere else.  Occasionally even when they do scans to try and find the primary cancer they can¿t.  But usually you would be told if it was an unknown primary tumour and I don¿t know if this was the situation in your mum¿s case.

Sometimes, if a lung tumour is close to a vein or artery it can damage the wall of the blood vessel leading to a sudden unexpected bleed.  It sounds like this may be what happened in your mother¿s situation.  When this happens there is usually little that can be done to help and the person would slip into unconsciousness very quickly without experiencing pain or distress.  I can appreciate that it must have been incredibly shocking and distressing to find your mother after this happened.

From what you have described it sounds more like poor communication from the medical team too you rather than a cover up of some kind.  But it is not unreasonable for you to want a better explanation of what happened than the doctors have given you so far.  Probably the best thing to do would be to contact the Patient Advice and Liaison (PALS) office at the hospital, if you contact them they should be able to help you speak to the  oncologist about what happened.  If you can¿t get any answers then you might need to consider making a more formal complaint.  There is information about how to do this here.

I hope this has been of some help.  It might help to talk things through with one of us.  Please do call us if you think it might help.  The nurses line is open from 9 to 5 Monday to Friday on freephone 0808 800 4040

Martin

Thank you, Lorraine and Kathryn for your kind words and information. I know wish I had been aware of a place like this during mum's illness, I think I may have benefited from conversing with those who are in similar situations or have been through it. I'll definitely stick around to maybe gain some support over the coming months, and of course, if it is possible, be one to offer some myself.

Martin, thank you so much for that response. I'll definitely give the PALS office at the hospital a call, and go from there. I've tried with my GP, but as previously stated, he's useless. He actually called me the day after mum died and said "oh yes, I thought she only had a few weeks left in her" - he just has no tact and he's just not helpful. Talking about stuff I find extremely difficult, I can just about share my feelings in text, but if I feel the need, I now know that there are still people around, even after mum died.

With regards to the way mum died, again, thank you. I'm not silly, I knew that it'd be something like that that happened. But the fact that nobody would just tell me the likely scenario, it just frustrated me and now to actually see it come from a professional, although you can't tell me that is 100% what happened to mum, is a real help. I also needed to see that she didn't suffer during her final moments. That in itself is a relief.

Thank you so much for your swift responses

Mark