My Mum, Australia

Thanks Lainy, Tiah and Catherine for your responses. It’s good to have people who have been through this to talk to, and give calming advice! I really need it, because keeping calm seems to be a problem for me at the moment, especially the last couple of days, in which I’ve been very teary.

Lainy, I asked Mum about getting a second opinion, and she said no. She just doesn’t want to. I don’t think she can handle hearing the “no hope”thing from anyone else. This is very hard for me to hear because I feel that if there is a different view, we are not going to get to hear it, and maybe we are losing a chance here. But I have never been able to change my Mum’s mind about something once she has made it up, and pushing her will just make her angry, so I have backed off and can only hope she will think about it and have a change of heart soon. I also suggested seeing a naturopath/nutritionist – I’ve found one experienced in working with cancer patients – just to help support her in the lead up to, and during, chemo. There’s so much to read out there on nutrition and supplements for cancer patients, and much of it is contradictory – I feel so overwhelmed just trying to figure out what is the best way to go, I thought a naturopath would at least be able to guide us and make sure that I’m not combining things I should not be combining. But Mum said no to that too. I really fear that the “false hope” statement is the only thing that she has taken on board in this whole mess. i feel very much in despair at times.

Tiah, you are right about the importance of seeing the surgeon – that appointment is today, and I’m hoping to clarify quite a few things, just to get things straight in my own mind. To be honest, I’m not sure even why we are meeting with him – if Mum is considered non-operable, what more can he tell us today? I’m thinking that he is just the guy is charge of everything overall, and so this is a “checking in”thing, maybe? My husband has offered to come to be a “different” set of ears today, which I think would be good, but I haven’t run it by Mum yet!

Catherine, thank you for your words of encouragement re genetic testing. It makes me realise the importance of getting to know the specialists a bit better – having time perhaps to build a relationship, so discussions about treatment are more fruitful. I know that we are only in the “ëarly days” of all this yet – at this point, Mum has actually had no treatment at all for the cancer. The fact that it’s been nearly 6 weeks since diagnosis worries me, though Mum is actually still looking and feeling okay and relatively normal (apart from the infection which seems
to have been managed). I’m taking that as a good sign And that’s another contradiction we have been told. Initially we were told this cancer was aggressive, then that it was slow growing! Then back to “aggressive”by the ONC’s. Reading the boards though, I have come to realise that they can’t accurately predict how this particular cancer is going to travel in anybody – all the stories are so different! That in itself gives me hope that whatever happens, Mum may just be one of the lucky ones who responds well. I just need to work on her mental and emotional well-being which has taken a severe beating.

The good news is that my husband and daughter arrived yesterday, and we are in the process of moving into the flat in Dad’s shed. Mum adores my daughter, so this was an instant pick-me-up. Need to get some normality back into Mum’s life, and this is a good start.

Thank you again for your kind and encouraging words. I hope everything is travelling well with you all, and that happiness and good news continue to come your way. I am working my way through the discussions on this forum and am often amazed at the courage, love and resilience shown by the people who have posted. My thoughts and prayers go out to all those who have had to come here looking for answers and support, and I am grateful that this place exists, otherwise I would feel very much alone!

Sandie xx

Just an update on Mum, plus a need to clear my head. We went to her first oncologists appointment last week, and they want to start her on Gem/Cis, but first they have to wait until the infection in her tummy clears up. They now think that the infection was due to bile leakage from the placement of the stents, which has caused something like perotinitis in her stomach. They can’t start chemo until they get this sorted, so she is still on heavy antibiotics (though at least she is home now), and we have to go back and see them on the 24th. I know that they have to get the infection under control first, but the delay is making me nervous. It’s been over 5 weeks since her initial diagnosis, and I can’t help wondering what this has meant for the spread of her cancer. I asked the oncologists lots of questions – for a start,we’ve gotten a bit of a mixed message about where the cancer has spread to – the doctor in the hosptital told us that she has a tumour inside her liver in the bile duct (which is a spread from the original tumour outside in the common bile duct), but that the rest of the liver was clear, but then later he mentioned “corrosions”in the liver to Mum. Not sure if I am just hearing what I want to hear. She also apparently had suspicious nodules at the bottom of her lungs, and one CT showed spots at the top that did not show up in a subsequent scan. The nodules at the bottom apparently did not show up either, but the scan showed that Mum’s lungs had suffered a bit of a collapse, so they were assuming they were still there. I asked about Sirt, but they were not familiar with it, I asked about immunotherapy and they said that was a developing field, and basically that there was nothing really available here for this type of cancer; I asked about getting genetic testing, and they said that they didn’t think that there would be any point…I heard those lovely words “false hope” again a couple of times. They want to start Mum on Gem/Cis, because that it the regime that has proven most effective, apparently. Mum has decided to go ahead and give it a try, but when we were outside the hospital, she used the word ‘terminal’to describe herself, and it broke my heart.

She has a meeting with the consulting surgeon on Wednesday, and I will be there too, armed with yet more questions. This will be the first chance I’ve had to speak with him myself – previously I’ve only been able to speak to the doctor under him. I’ve been feeling for a while that we should be getting another opinion, but Mum just wants to take things “one step at a time”. She gets overwhelmed with all this very easily, which is understandable. and I know that metastisis to the lungs rules out surgery anyway – should we just proceed with the chemo first, see how she responds, then get a 2nd opinion? Or should we see how she responds then see what they come up with next? I asked them about the chance of surgery if she responds well, and they said that would be up to the surgeons – but is there any chance of the chemo clearing up the spread enough to make her viable for surgery? If we get a 2nd opinion will this process hold up treatment again? All these questions just go round and round in my head.

I’ve just moved down to Brisbane to be with Mum and Dad for the duration of her illness, and my husband and daughter will be joining me in a couple of days. I’m hoping that the arrival of her 7 year old granddaughter will brighten her up a lot, and inspire her to fight a bit. And I can supoport Mum much better by actually being here. I’m trying not to feel overwhelmed myself. I don’t even know if I am making any sense

Thanks for listening to my rambling!

Sandie xx

Thank you Lainy, for your response. It’s good to talk to someone with experience in dealing with this disease. I have asked to speak to the doc in charge of Mum’s case, and will get a chance to do so when she sees the oncologist as an outpatient on the 10th. So far, she is still in hospital, but thankfully her pain is under control and she is a lot more comfortable and looking happier. The doctor’s think she may have peritonitis, caused by the operation for putting in the stents. They are hoping she can come home tomorrow, now that it has all settled down.

Mum is 67, and in fairly good health, though carrying a bit of weight. She was diagnosed with diabetes about 4 months ago, but was controlling it well with diet and was not on meds.The last couple of months though, she has been more easily fatigued and lethargic, and it seems now we know why. She is not eating well in hospital – just lost her appetite – and I can’t wait to get her home, and try to get a bit of strength back into her.

When we spoke to the ONC in hospital a couple of weeks ago, he told us that without chemo, she would have up to 6 months, with chemo up to 12 months. We will find out more when we go to our appointment on the 10th. Mum says she will give chemo a go, but if it’s too hard on her, she will be stopping. I respect that decision of course – and you are right, it’s about quality. But obviously I am hoping that she is one of those people that copes well and gets maximum benefit from it. I keep reminding myself that she is her own individual, unique person, and that no one can accurately predict what her future will be. I am hoping and praying for the best.

Dad and I went to see our family GP today, and he explained to us that in the major hospitals in our area, teams of specialists get together from all major hospitals to talk about individual cases. He assured us that everything would have been considered and that doctors keep up with all the latest info from around the world. He seemed to think that a second opinion would not be worth it. It was difficult and overwhelming to hear this. Not sure I’m convinced.

Thank you for your advice about being ‘gently in charge” – I think you are right, and will be doing my best to do this. And thank you for your support. Talking helps