Supporting parents emotionally

Hi I just came a cross your post and realise it's a few days ago now so not sure if my reply is as relavavt

My husband was diagnosed with cancer of the bile duct and had been asymptomatic up until 7th November 2017 when he complained of right sided shoulder pain. Sadly nigel passed at home on 19th December 2017.

Nigel was fortunate that he had only a little discomfort, which was managed with over the counter medication and hiccups which we managed with medication and changing position as needed. Nigel was alert and responsive right up to the end and he passed at home sitting on our settee with me sat next to him and our daughter and our son sat on the floor either side of him holding his hand

I had the privelidge of caring for nigel for those short but memorable 6 weeks

We were closer than ever before

Unlike you and your parents we didn't have a long period of waiting to be diagnosed, we knew in less than 25 hrs that nigel was terminally ill and what Nigel's options were

Until you know the full extent of your dads situation, you won't know his options and therefore what sort of care he will require and in what timescale etc

Your parents will be worried, both for each other and for them self and for you.

You can't change your dads illness or the outcome all you can do is be there to listen, talk openly about how you feel, so they don't feel they need to shelter you, encourage your mother and dad to speak with you independently of each other and together as a family too and make sure that they understand the situation and aren't afraid to ask questions at appointments. Sometimes what we imagine is as hard to deal with as the reality but you need to know everything to make sure that your dad makes the right choices

You don't need to uproot, and change jobs to do this 

It's only natural to feel emotionally wrecked but we don't make the best decisions when we are stressed, so my advice is sit tight, keep in contact and visit as often as you can and attended appointments if that is possible and speak to your parents as to how they feel you can best be of help to them, but don't forget that you too may need help to come to terms with what's happening

Remember life is a journey, it's what happens to us everyday and not what will happen one day in the future. Enjoy your journey as none of us knows our stop

Do take care

Thanks so much Nettie, your reply was a real comfort. It helps to know we’re not the only ones dealing with this spontaneous and cruel disease and I know I should be grateful that he has treatment options available to him. i’m so sorry to hear about your husband, you sound like a very strong and loving family. 

My dad is now planned for a Whipples procedure in a week or so which he is very scared about but realises that he won’t feel any better without it and recognises the need to get it done.

He’s fit for his age and I am confident he will pull through well. I am going to work from home and support my mum while he’s in Hospital.

I’m just so afraid of what will be said about his diagnosis following his surgery and this will be the only formal diagnosis and staging so far. (They did take a biopsy but we haven’t heard about it).

I feel like whatever is said will change our lives completely and if he has adjuvant chemo I will want to move home to support them both through it, even though he wants me to carry on as normal in London and this will make him angry. I just feel so awful being away from them and want to spend time with him, and the controlling only child in me thinks that if i’m there he’ll do better. 

How do people make plans for anything or carry on with life when they don’t know if their parent will get ill again? How can people stand feeling scared everyday for years? I don’t understand. 

I feel so lost and lonely in the world and keep asking God what I should do, I just want someone to take care of us and tell me that I won’t always feel like this. I find it hard to concentrate on anything and just think about it 24/7 trying to figure out what I should do. I never though I would go through this at 27.

hi,

I have read your post and Nettie's response and all I can say is this is a tough place to be. My hubby was diagnosed stage 4 in Nov 2013 and is still here after repeat chemo but no surgery as it was not appropriate for him. 

we have 2 kids now 19 and 16 and I wish we were not going through it now.

Our future has disappeared at one level but in another way it has made us focus on now.

i understand totally that you want to move and be near and yet parents also are thrilled with what you have achieved already and so they need you to be living your life too.

I have been angry, resentful, tired, bewildered and felt very dislocated from situations but we have kept it simple and plodded with each day and responded to each day as it comes. We have also laughed, done things, tried new things and lived in each day, so we have done gigs, trips, meals, bought a sport car.... 

everyone responds differently to this and shock is the word that comes from your text -  and trying to get your head around it all when it is tough.

I do not have a crystal ball for the future, I do not have a plan but we have found a new adventure in that as hubby is on chemo again now we have had to change our holiday plans for the summer as we may not have it. So have focused on buying a motorhome as bonkers as this sounds as it has been a joint decision, a joint plan of what we hope for, we have worked together to sort kitchen bits, etc and whatever happens hubby and I have done this together.

All I am saying is you need to find a new normal where you can talk to mum and dad, be with them and be away from them too. The need to find a new space to be you, and so the motor home represents I guess mental freedom as cancer will be left at home while we escape at one level - its not about denial it is about finding a new space for us to be in.

I wish you well and happy to natter anytime - you are 'alone' in all this but a scribble away from chatting to me or others

J x

Hi lookingforhelp

Just to let you know that I have been thinking of you all. 

I hope you and your family holding up

Has your dad had his op?

X

Hi Nettie,

Huge respect for what you and your family and dealing with Judele. It does offer some comfort to know there’s so many of us out there dealing with the uncertainty of a cancer diagnosis of ourself or a family member every day.

I know we are lucky that Dad (we presume) is fairly early stage which is why he was eligible for surgery. His growth presented in the distal extrahepatic duct (quite far down in the bile duct) which according to research causes jaundice fairly early on and is therefore easier to catch and surgically remove while still relatively contained (not so near the liver end of things).

So I am grateful for this. It sounds like your husband is beating the odds so far! Well done you for getting on with your lives and supporting your children. I’m very inspired! Fingers crossed for you all and have fun with your motorhome. My parents had a static caravan for a couple of summers (before all of this!) and loved it - it was a real escape for them. 

Hi lookingforadvice.

So glad to hear your dad has had his op and is doing so well. Hope your mum is keeping strong too.

Uncertainty certainly takes its toll, we like to feel that we are in control of all aspects of our lives but sometimes we are shown that this is not always the case, but I must say you sound a little more 'relaxed'.

I hope your dad has good news tomorrow. I'll be thinking of you all.

Hi Nettie,

Just to update you. We found out the results of the Whipples op. Unfortunately it was a cholangiocarcinoma as suspected. It was T2 (fairly early stage), completely excised with no nodal spread.

On the one hand this is a really good outcome, but I still feel like i’m experiencing ‘anticipatory grief’ and will continue to live in fear of recurrence.

The next step is for Dad to be offered 6 months of oral capecitabine (low dose chemotherapy taken in tablets, not infusions) to try and prevent recurrence, however despite knowing nothing about it Dad is saying he won’t have it.

I do sympathize with him as he’s been through a lot - a huge surgery, drain complication and is now desperate to get back to ‘normal’ - however he would likely be disadvantaging himself if he did not at least try this treatment. (A big study called the BILCAP trial recently showed that people who have chemotherapy after surgery have much better outcomes).

I respect that it’s his life and he has to make this decision myself, but this will make it doubly hard for me and my mum to live with the risk of this decision. We will meet with the oncologist soon who I hope will be able to reassure him. 

I hate cancer and the constant fear it’s brought into my life. 

Thankful for this community for making me realise i’m not alone, but hard when I see other people my age so carefree.

Ultimately, the final decision maker is your father.  I would recommend that you do a whole lot more research about chemotherapy and the the drugs used and dig deep for the side effects and how the chemo works DO NOT take what the Oncologist tells you as gospel, remember this and ask this question "How much do they make from chemo".  Oncologist are allowed kickbacks from drug manufacturers.  Look at oncology reports and blogs to find the real information.  My husband has been surviving colon cancer since 2015 he did as he was told, went thru the full course for radiation and chemo. January 2017 diagnosed with colon cancer with mets to the liver. Had surgery did SBRT and 9 out of 12 rounds of chemo with Avastin that nearly killed him with blood clots to the left arm and lung.  I had to force the Oncologist to do something about his shortness of breath and pain in the arm. (all she was doing was writing them symptoms down and not acting on it).  Bottom line is that if I knew then what I now Know,  I would never let my husband go down that road.  You really have to dig deep to find information that is buried from the public finding.

Hi looking for advice

It's not easy to carry on as normal when someone you love is faced with illness and it's only natural that it not only affects your lives on a daily basis but makes you question the future.

Until we are faced with something like this we don't think of life coming to an end, we live each day planning our next step, looking for that new job or meeting up for lunch with friends, if we can find the time to do so that is....we just don't realise that we are on a journey from the day we are born and even though our experiences along the way may differ we all have our final destination in common.

My 20 year old son asked shortly after his dad died 14 weeks ago, what is the point in life?

He said dad hadn't complained of feeling ill, he didn't smoke, he consumed very little alcohol and he ate well. He said dad worked all his life, even up to the day he first visited our gp with shoulder pain and dad planned for and looked forward to retirement. 

Just six weeks to the day of that gp visit his dad passed.

Today our son continues to attended university, he continues to play football for our local team and he still holds a season ticket for Swansea Coty FB a passion he shared with his dad.

But only last night he cried in my arms saying how much he misses his dad and how much his dad will miss in his life. 

I try to explain to him that as parents we only borrow our children for a little while and then they make their own choices. 

We will always be with them whether we are here physically or not. We are part of you, we nurtured you and enabled you to go on and make those choices. That's what parents want for you.

I Explained to my son that his dad wouldn't mind if he went on to join the anti terrorism squad as he plans at the moment, bit equally he wouldn't mind If he went down a completely different road. All his daddy would wish for him is that you have that piece of paper that allows him to choose his road.

My son at 20 is questioning his own mortality, he says that 

'loosing dad has made him see life differently'.

How he realises how important his family are to him and how he took us all for granted. He says he realises now that's life isn't forever and how little time we actually have here and how fragile the life we have today is and how that life can change in a blink of an eye.

He says

'we are all just cogs in an ever turning wheel. We exist as individuals, with our own thoughts and agendas but it's the other members of our cog, our family and friends, who make us whole.

I have spent most of my life working on busy surgical wards. My family have always teased saying' don't tell mammy you have had a headache, she'll think you have brain tumour or  a little diarrhoea or constipated indicative of ca .

So how did I miss this for nigel.

I churn it over and over thinking back over the past years did he present with any symptoms but to my knowledge he didn't. 

Nigel was told he was terminally ill 2 days after that first gp visit, he was offered chemo but became jaundice within 2 weeks of diagnosis and passed before he commenced therapy. 

Nigel was very positive and willing to go for it but if I'm honest I felt it wouldn't help and may tob him of the short time he had left with us. I know 

I would have supported Nigel through anything he wanted and I suppose what I'm trying to say to you is that you have no control over your dads decision. You can only speak openly and frankly of your views and of your wishes and of your concerns and hope that he comes around to your way of thinking.

I really hope you and your mum will be content with your dad's decision and your journey is smooth 

Do take care of yourself 

Nettie