topic Liquid biopsies and PET scans in Coping with a loved one's cancer

Liquid biopsies and PET scans

VM — Sat, 09 May 2020 11:36:44 GMT

Hi,

My stepson is stage 4 bowel cancer. He was diagnosed 18 months ago. I am feeling he has 2 months at best now. He is insisting on a liquid biopsy. His Oncology has explained that he won't benefit from one and from what I read it is only really useful in early detection and treatment . He spends a lot of time on a Colon Cancer Facebook group from all over the world and insists his team are letting him die because they won't let him have it. He is also wanting a PET scan, insisting it will show he isn't as sick as he looks (I appreciate this is denial) Has anyone had any experience with either of these procedures please?

Thank you

Re: Liquid biopsies and PET scans

Anonymous — Mon, 11 May 2020 00:38:46 GMT

Hi @VM

I have not had any experience with this but just wanted to let you know that someone is listening.

Difficult and emotional times for you.

Re: Liquid biopsies and PET scans

VM — Wed, 13 May 2020 01:33:16 GMT

Thank you Darcy. I sometimes feel like I am talking into the void 😞

Re: Liquid biopsies and PET scans

Anonymous — Wed, 13 May 2020 05:09:34 GMT

@VM

Understand what you mean about talking into the void. I have found that often people just don't know what to say.

I think it important to acknowledge the emotions that we have, it then helps us to work through them.

Yikes, having to deal with denial is a tough one, whilst facing the reality of things is also hard it too enables us to realistically assess what is achievable in the present in relation to quality of life.

Re: Liquid biopsies and PET scans

Anonymous — Wed, 13 May 2020 05:41:37 GMT

Hi@VM

Will respond over here in your discussion page.

Yes communication is all important. When asked about progosis my husbands chemo doctor said there was no way of knowing who will respond to treatment and will only give us statistics.

I think having some sort of idea of prognosis perhaps gives us a feeling that we might be able to perhaps prepare ourselves, give us a small sense of control or perhaps in a practical way giving us opportunity to see what can be achieved in relation to quality of life for whatever time we may have with our loved ones.

Re: Liquid biopsies and PET scans

Anonymous — Tue, 19 May 2020 22:03:26 GMT

How are things going @VM ?

Re: Liquid biopsies and PET scans

VM — Wed, 20 May 2020 03:41:09 GMT

Thank you Darcy. Your presence is very reassuring. Usually it is me being the one checking on others. I am a counselor so my go to is to look out for others and particularly now our family. It's been a long road even prior to diagnosis with our 'cancer kid'. I have to say I feel very alone at the moment. Being the stepmum, my husband's siblings, their wives and his friends don't correlate the impact on me. I asked him if anyone asks him how I'm going and he was gob smacked when he realized they haven't. My friends ask after him all the time. It could be a male thing...I love men by the way so not man blaming. This experience has given me much insight into the needs of those on this side of the fence. As a volunteer with a Palliative care Hospital I can see how far removed 'we' have become from really addressing the needs of families and cancer experiencers. Just because someone doesn't ask for help does not mean they don't desperately need it. It is so sad that it has come down to incidents and insurance 😞

Anyway we are now entering the pointy end with possibly 6 weeks at best to go. So no amount of biopsies are going to help 😕

Thank you again for being that gentle set of eyes looking out for me...and others here x

Re: Liquid biopsies and PET scans

Anonymous — Wed, 20 May 2020 05:55:22 GMT

@VM

Sending ever so gentle thoughts your way. While self care is certainly necessary, it is no substitute for a real life person who has a decent coffee and a large block of chocolate on hand (as well as a box of tissues).

Re: Liquid biopsies and PET scans

VM — Thu, 21 May 2020 10:47:31 GMT

Thank you Darcy,

Strange as this sounds...I have printed out this last message and have it by the computer for support.

🙂

Re: Liquid biopsies and PET scans

Anonymous — Wed, 27 May 2020 08:52:57 GMT

Checking in @VM

How are you going?

Re: Liquid biopsies and PET scans

VM — Sat, 30 May 2020 01:27:01 GMT

Thank you for checking Darcy.

I'd say my stepson has 4 weeks at the very outside. He seems to be now coming to terms. What is so frustrating is he has wasted his time trying to 'think' his way out of it and arguing with the specialists and not complying with some aspects of his drugs and health plan. He has continued to smoke throughout though he was told to stop to give himself the best chance. He refused to take the anti nausea drugs resulting in vomiting for months, resulting in massive weight loss, inefficiency of the chemo and now the Lonsurf .

He and I will attempt a project of wrapping Christmas presents and write cards for his two nephews.

He now has the Palliative Nurse coming in setting up his driver full of anti nausea meds...and ultimately his pain management. The Calvary Palliative Doctor came yesterday and she is an angel. She gently but firmly discussed the Ambulance directive with him as well as resus options, stating she would not be encouraging them to resus Chris because it would be too traumatic on his body with no gain. These are conversations w e have tried to have with him...'but what would we know being is parents' xxx.

He now has some OT equipment which he has finally accepted.

He is incredibly tired and the difficult conversations have really rocked him. But they have enabled us to talk more about signing his Will, funerals and coffins...things that 'I' want him to have control over..if you know what I mean?

My husband is keeping himself very busy at work in order to cope and I get that. And I am picking up all the care activities as I used to be in Aged Care. However, I have a chronic pain and fatigue disease and my body is wearing out....that is frustrating to me as this is another level of loss, because I used to be so capable. I have asked for leave from my work as a Male Domestic Violence Case Coordinator because I can't work with these vulnerable men on the phone at home with interruptions all day which I can't set times to.

I know you will say "don't apologize" but I apologize for being so long winded. Thank you for being there 🙂

Re: Liquid biopsies and PET scans

Anonymous — Mon, 01 Jun 2020 11:44:10 GMT

Yikes @VM ain't it so frustrating (but also a relief) when someone from outside says something and things finally click and our loved ones accept the help we have so desperately been trying to get them.

Sending gentle thoughts your way as you navigate the next little while (and some more virtual chocolate ... splurged on the expensive stuff 😁).

Re: Liquid biopsies and PET scans

VM — Tue, 02 Jun 2020 02:41:19 GMT

Hi Darcy,

Yumssss..thank you.

His Oncologist has taken him off the Lonsurf as its side effects are causing more harm than good. He looks awful. And as I flip from cross step mum to compassionate step mum I find myself wishing I would wake from this nightmare :(. It is horrible

Re: Liquid biopsies and PET scans

Anonymous — Tue, 02 Jun 2020 09:41:03 GMT

@VM

I like the way that Susan David puts things:

"Take a step back. Sit with it for a minute. Because while all of your emotions are valid (and may feel extreme in the moment), most of them do not need to be acted upon"

Yikes VM, I have plenty of opportunity to sit with my feelings and not act on them.

Re: Liquid biopsies and PET scans

VM — Tue, 02 Jun 2020 10:44:43 GMT

LOL.....I seem to love chasing my feelings down and kicking them in the shins to make sure they react and don't respond...even though I know better 🙂

Re: Liquid biopsies and PET scans

Anonymous — Tue, 09 Jun 2020 03:01:04 GMT

How are you doing @VM

Re: Liquid biopsies and PET scans

VM — Thu, 11 Jun 2020 04:31:23 GMT

Hi Darcy,

We have the close family rallying to sit my stepson if I have to go to work or do errands. I feel crowded actually, especially by his Mum. I know she is willing to help but she likes to give me her 'expert' opinion on how to manage things in my own home. I feel when ever she is there she gets in to the bedroom with the nurse and I tend to retreat because there are too many bodies in there, subsequently I miss some information. She always seems to huff and puff and ask inane questions and doesn't lift a finger to help in between tending to my stepson. The irony is that she and my stepson don't get along and that she more or less relinquished care of him to my husband when he was 2 years of age. LOL I don't seem to play well with others.

Anyways.

How are you doing?

Re: Liquid biopsies and PET scans

Anonymous — Thu, 11 Jun 2020 10:56:53 GMT

There sounds to be quite a number of different emotions at play @VM .

Is the plan to keep stepson comfortable at home vs hospice?

Things here steady, hubby had first chemo infusion today.

Re: Liquid biopsies and PET scans

Anonymous — Thu, 18 Jun 2020 13:03:49 GMT

Been thinking especially of you today @VM and wondering how things are going at your end.

Re: Liquid biopsies and PET scans

VM — Fri, 19 Jun 2020 09:52:52 GMT

Well Darcy, you either know me in some way, or you have ESP.

Christopher left us yesterday morning at 2.20. He was at home, comfortable and surrounded by his family. Despite having anti agitation meds and morphine he still tried to talk to us...probably to tell us how to do things . Even think we heard him say he wanted to get up for a cigarette. He even managed to force out through his fog an Val...love you" which I don't deserve. I'd started calling him face ache over the years and when his Mum and partner left his room I said "G'day face ache" and he smiled and replied "Hi face ache".

I think we had an amazing team around him. Lucky to have a daughter in law who is an oncology nurse. She drew up more morphine for us...otherwise we would have panicked if we were running out. I think we helped him have the best death we could, given how strong willed he was. It was something I worried about not getting right, but we stepped up and managed it. I think it is the biggest job I have ever done and hopefully ever will.

How are things for you?