FionaJ Posted May 17, 2018 Posted May 17, 2018 We got the formal diagnosis of pancreatic cancer for my 83 year old Mum (after hearing something from an A&E doctor after she fell a couple of days ago). But her kidneys are not working well and her INR levels are too high to do the procedure to put in a stent to open her bile duct (she is yellow).A waiting game whilst they treat her over the weekend and review Monday.But the cancer is not operable as it’s round her blood vessels and reading between the lines she is not strong enough for chemo.How do I tell my boys (14 and 17)? What do I need to do to get the best care for her?Advice and support gratefully welcomed
Dandygal76 Posted May 18, 2018 Posted May 18, 2018 I am so sorry you are going through this. Until you know what the situation is on Monday it is hard to advise on care - I would update us on Monday and in the meantime call the nurses at PCUK. It will all depend on whether she stays in the hospital, goes to hospice or comes home (to your home or hers). I don't think they will let her out whilst jaundiced to be honest so just be there for her.Re the boys, I had this with my then 16 year old when my dad was diagnosed. I have always chosen the brutal truth because there is no sugar coating it and I don't regret it. When we was told my dad was going to die and was shutting down it was the hardest moment of my life telling my son and he went on to be amazing through the whole thing (after the initial shock) - I was so proud of him. As much as it feels hard now to do so you are in the early stages of diagnosis and it feels like nothing will be normal again but kids are inherently strong and after the tears and shock they will come through. I think they can also tell all is not well because we do not hide things as well as we think we do and that is worse for them.
PCUK Nurse Jeni Posted May 18, 2018 Posted May 18, 2018 Hello Fiona,I am so sorry to hear that your mum has been diagnosed with pancreatic cancer. It is a shock, and waiting for the outcomes on Monday, as to whether she is able to have the stent fitted or not, must be difficult for you all, not least your mum. Hopefully, they have treated some of the symptoms of the jaundice, if she has any - as this will help her to feel less unwell. In terms of speaking to your boys, have you had any contact with Macmillan at all? As they are able to give some advice/support around this area. There is also a charity called Winston's Wish - https://www.winstonswish.orgThey do help children who have a loved one with a life limiting illness (and also after bereavement). It might be helpful to have a look at their website? In the meantime, if we can help, please do not hesitate to contact us - details are in the email signature below:Jeni JonesPancreatic Cancer Specialist NurseSupport TeamPancreatic Cancer UKemail: nurse@pancreaticcancer.org.uksupport line: 0808 801 0707
Veema Posted May 18, 2018 Posted May 18, 2018 I agree, it's best to be honest with the children, they will resent you and not trust you otherwise. My daughter was 8 when my husband was diagnosed and 10 when I had to tell her he was going to die...she had a cry, said she loved him and then went out to play. Macmillan have a leaflet on dealing with children, which I believe you can download from their website. I hope they can sort the jaundice out, it's the time when my husband felt most poorly.Vx
Saxon Posted May 22, 2018 Posted May 22, 2018 Definitely you should tell them. We told our children that my wife had it before anyone else. They will probably know that something is going on by your demeanour and be wondering what it is. It may sound selfish, but also by telling them it's one less thing for you to stress about and they will be able to support you better - you need to pull together as a family through the tough times ahead.
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