Dad Diagnosed

Hello Hope_86

Welcome to our friendly and supportive OC forum, as difficult as it is to find yourself here and to type your first post, you will soon find that you have made the right steps in finding a great place to communicate, record your fears and get a greater understanding from others who have either experienced this diagnosis themselves or, as in your case, have loved ones who have/are.

I am so very sorry to read that your Dad has recently been diagnosed, it is early days and the waiting is something that I personally found very difficult. Like with your Dad, my Husband was told immediately by the person carrying out the endoscopy procedure, what we did find from this though is that because they knew it seemed to speed up the biopsy results, the referral to the cancer hospital, the communication with the oncologist and the start of the treatment - in total it took 17 days before he started his first chemo session.

It is important to hold on to the knowledge that everyone is different, their treatment, prognosis, reactions, are different, and those of us on the outside, struggle in our own ways, nightmares, sleepless nights, anxiety, control, organised, disorganised.. there is no right or wrong way.. your way will be the best way for you and your Dad will find the best way for him.. 

We have a BLOG which is our journey so far, it is thankfully quite a positive journey, I don't know if you and your Dad will benefit by reading it but you may find ways to communicate as we have... I am quite direct, not everyone can be, for for my Husband to know that I didn't want anything hidden from me, was key to our communication.

Please keep us updated on Dad's progress and on how you are coping. 

There are several other forums also available and I am happy to share them with you if they are of interest.

Wishing your Dad all the very best

Lowe'

Hi Lowe 

Thank you so much for your reply, and that’s reassuring to know others have been told there and then too, so thank you for that.

Thanks for sharing about your blog too - I will have a look at thanks, and glad yours has been quite a positive journey. 

Ah yes, any other forums etc would be great, thank you so much and hope you enjoy the rest of your weekend. 

All the best.

Hi Hope

You are very welcome, I hope there is something that you can take from our blog and use going forwards.

Some of the forum's that may be of interest include

Cancer Chat

Family and Friends

Both of these are places where you can release you thoughts, where others who are experiencing similar thoughts and emotions hang out.

Once we understand the full extent of your Dad's condition there may be other areas on the site which will be useful?

Maybe you can update your profile (if you haven't already) others will then know why you are on the site and may follow your posts if you they are going through something similar.

I hope these help to begin with.

Lowe'

Hi Lowe 

Thank you - I will have a look at these. 

Thanks for the tip - will update my profile also thanks. 

Hi Hope, so sorry to hear about your dads diagnosis.  My dad had exactly the same scenario back in August last year and it was such a frightful time waiting on results.  My dads symptoms were similar, burping continually, unable to keep food down and had lost over 3 stone from March-August.  The tumour was blocking the entrance to the stomach so the first thing they did was fit a stent which has enabled him to eat again and although he hasnt put any weight back on he hasnt lost any which is great.  Dad was 74 at diagnosis and the hospital suggested palliative chemotherapy which started in October and has now finished.  The first 3 or 4 chemos he managed great and recovery was around 3-4 days before he started feeling himself again but the last couple we tough on him and recovery was almost up to 2 weeks. If you have any questions please reach out to me for anything.

thinking of you

Ali

Hi Ali 

Thank you so much for your reply, I hope your dad is doing okay through his treatment & next ones aren’t as tough on him. 

I just don’t know how I can help my dad & just wish I could do anything to take it away from him. I am putting on a brave face in front of him, but as soon as I am back home I just break down - I never knew it was possible to cry & hurt this much. How do you manage? X

His treatments have stopped now so at least that is one less thing for him to have to deal with and it has given us those additional 6months which have been a blessing.  The same as you, I put on my brave 'got it all together' face in front of him as I dont want him to see me upset, I tend to have my moments in the car driving there or home and when a song comes on the radio that makes me think of him.  I try and stay as strong in front of the kids too and take each extra day with him as a blessing.  I try not to be overly fussy as he doesnt like a fuss and sometimes when I visit he is laying on the sofa the entire time and we dont even speak but he knows I am there and thats all that matters really.  Ive managed to sort out all their benefits, carers, palliative care team,  moved all their bills over to direct debit (they still paid cash for everything!) and I help out around the house without stepping on my dads wifes toes (she too has terminal lung cancer) so I do things I know she struggles with like the hoovering etc.  Dad has a hospital bed in the lounge and for the past 3 weeks has been sleeping downstairs as he cant manage the stairs any longer.  He also has long term carers that come in the morning to get him washed and dressed which is great.  The needs of the carers will be reviewed and changed/increased as Dads need increase. 

Just be there for him thats really all you can do, I take him his favourite sweet treats or bake something very unhealthy which he always enjoys.  he gave the hospital/drs etc permission to discuss everything with me so I can call up and they will speak to me which is great, the entire team have been amazing so far. 

I managed to sort a blue badge quite quickly which relieved the stress of parking spaces at the hospital and the palliative care OH arranged a wheelchair too which was an absolute god send as Dad couldnt walk for more than 5 paces without feeling dizzy and out of breath. 

One thing we did find was that Dad wasnt drinking enough fluids and ended up with two trips to the hospital for the day being re-hydrated as his blood pressure drops dangerously low if he doesnt drink enough. 

He uses a zimmer frame now to get to the toilet which has also been a great addition and allows him that independence still.  We have a commode ready for when he cant make it to the loo.   

As I said in my previous reply, always happy to chat and help out in any way I can.  I have found writing whats happening and my feelings down on here has helped me actually.  Im a pretty strong independent, organised person (thats dads doing as he raised me) and I can compartmentalise everything which allows me to cope, I think thats the best way of explaining how I think I am coping with it all. Anyway, Ill stop rabbiting on now :) 

Ali

xxx

Hi Ali 

Thanks for taking the time to reply & I am glad your dads treatment has meant you can spend more time together.

Sounds like you are doing an amazing job in supporting your dad & also his wife. 

That’s good he has allowed the doctors to discuss things with you - I think my dad has done the same for my mum - although I worry about her too, as she is only early 60s & they’ve not long retired & had so many plans for after lockdown. 

Ah thanks - I will make sure he is still getting plenty of fluid. 

Thank you so much Ali - really appreciate your experience of it & how you are coping. It’s like I am already mourning for what I think he will miss out (I am early 30s & am not yet married & don’t have children). I need to get more of a fighters attitude I think, and just pray we still have him in our lives for a while yet - he is like the rock that keeps us all together & in line. At the same time though I don’t want to see him suffer, he has always been a strong man - physically & mentally - so the changes physically I think will be a struggle. 

Sending you love & positive thoughts xx

Today has been a week since dad was diagnosed, still waiting to hear about a date for his CT scan & also results from biopsy so we know what stage it’s at.  Feels like we have been waiting forever. 

It is so hard waiting as I just want them to start helping him & treating him right away, each day that passes I worry if it’s getting worse, or if it has now spread, and perhaps the day before it hadn’t. 

My dad had a really down day on Sunday & it was so hard seeing him like that as he is the rock of our family. Yesterday he seemed a lot more upbeat though - I guess everyone has those days. 

Take care all. 

Hey Hope,

its not unusual for it to take up to 2 weeks.  Its only natural to have those thoughts too, internally I was furious that Dad hadn't told me about the symptoms when they started 6months before he admitted them to me because it could have been stage 2 or stage 3 or operable at that stage but I realised 'what if's' were not helping and that it was best to just deal with where were at and what we did next.  Your dad will have mixed emotions right now for sure, he will be up and down now while waiting for the full diagnosis and that may continue post diagnosis too.   Being there is all you can do for the ups and the downs.  

I found doing lots of research helped me while waiting on results/appointments etc.  I was armed with questions at the results meeting based on the many different scenarios associated with staging/treatment etc and for me that helped as I felt like I was more in control if that makes sense 

Take care and keep in touch wont you 

x x x x