Thread for those who have a parent with cancer?

[Fhortu]

I'm just wondering if there is a general one that I've missed, or, if not, if there's any interest in making one?
(I know there's Still the storm for people who have partners with terminal cancer.)

My mum was recently diagnosed with stage 4 bowel cancer, and I'm sure there are other people here struggling with a parent's diagnosis.

Hi again, I've now RTFT. First of all, so sorry that so many of us are going through this, and also that so many since this thread started have had to deal with the death of a parent. It's so sad.

My situation is slightly less acute than some of yours in that my Dad, whilst his cancer is incurable, and has spread quite extensively into his bones, is currently not really affecting him day to day, although like many his life is punctuated mainly by hospital appointments.

The oncologist hasn't given him a timeline as such, and he's responded really well to all the treatments (hormone therapy and chemo) he's had so far, but I guess the thought that's at the back of my mind is knowing that it is in his bones, how long before it does start to spread again?

He is 67 and lives on his own, as he and my mum were divorced and both remarried many years since, but his second wife died a few years ago. He has 2 dogs that he still walks every day, even when he was having chemo, and goes get out and about to see friends and family. I live about an hour away, my younger brother about 40 mins.

This week I've been panicking a bit as he's had a terrible sore throat, so bad that he couldn't sleep, which isn't like him. And obv any infection is a worry. Anyway, the GP has given him antibiotics and done bloods to check his white blood count (I think) and seems relatively happy, so I guess that's something.

So all in all I feel a bit of a fraud posting on here, as so many of you are a lot further along than we are. But I guess I know it will come to us at some point.

Thanks for listening to my ramble.

@Enterthewolves I am so sorry for your experience. Your dad has done so fantastic. I completely understand the stress you have with the uncertainty. All the mixed messages around the prognosis is similar to what we have experienced. One day we are told he is showing the signs of dying, next day they are talking about long term nursing homes. I got signed off work sick in the summer and I just don’t know how to get back to work because something changes daily.
Your last sentence totally resonates with me because that’s exactly how I feel. My life is just exhausting trying to deal with him and my kids/house/ talking to professionals/visiting etc etc. I can’t even plan my days around mealtimes I literally don’t even know when we are going to eat most days and hardly ever see my husband. I’m not even at work at the moment!

Currently we are consumed with decisions around where he will be cared for next. My local authority can’t offer very much choice. Boils down to going home with a care package leaving us to largely manage ourselves and he lives alone, or a nursing home longer term with one nominated visitor due to covid. It’s really frustrating that at this stage of a persons life the best care they can offer feels like a prison to the individual because their families can’t get near them. It’s so inhumane.

@ethelredonagoodday

Your experiences are very real because you are worried about your dad and the future. You probably are anxious waiting for signs of changes and I think that is the worst thing for family. Not being able to predict what will happen and when. All I can recommend is to try and spend quality time with him doing fun things that you both enjoy. And try and educate yourself around types of complications he might experience. Don’t overdo it though as it will become all consuming and you’ll be looking for little signs all the time.

Take care of yourselves as much as possible.

I've just been catching up on the thread. My father in law passed away ten days ago. Approximately a month after his diagnosis. At that point he had two good weeks, a third week of extreme fatigue unable to leave his bed and rapidly downhill after that.
We had end of life meds in the house but he passed away before the nurses deemed it time to use them.
He wanted to be at home with his loved ones and he was. His pain was not managed well at all one night we had to wait eight hours for a nurse to come and give him a morphine dose it was truly awful.
There was somewhat of a feeling of honour or maybe privilege?? can't think of a better word that we nursed him and looked after him and followed his wishes to the last letter.
Sending love to you all going through this. It's truly brutal.

@Rollercoasteremotion I'm so sorry for your loss. I've been thinking that we also feel grateful & privileged to be able to care for my mum as she is dying. Like everything right now though it feels a big stew of conflicting emotions. The gratitude is alongside (like @blubberyboo says), feeling exhausted & guilty for mostly abandoning my family & reducing work hours to be there, but feel that my current offering is insufficient & simultaneously excessive. I'm so sorry you've to make decisions about care. That sounds so hard.

Mum is totally dependent now but stable -she's consistently sleeping 22+ hours day for the last few weeks. I just feel like I've no idea what's going on or how long we'll be in limbo & what the next inevitable downhill stage is going to be like ☹️

@ethelredonagoodday does your dad have any carers, Marie Curie or any other regular visitors? It be be worth getting something started-even if he doesn't need it, it's a good idea for him to have a contact he knows before he's meeting them when feeling more vulnerable.

It was ds 12th birthday yesterday & we got him the board game ticket to ride. Tried it out tonight & was nice to actually do something with the family. He had a mini meltdown last night though & said he's feeling overwhelmed with starting secondary school & me not being around much. Needing the mantra 'this will pass'. And tomorrow is Monday & I fucking hate Mondays at the minute.

Hope everyone is having an ok weekend

Coming to join the thread. I’m sorry for everyone’s loss & what people are going through.

I’ve NC as this is so identifying- I hope no one minds.

My lovely dad has been diagnosed with aggressive brain cancer & has been given a terminal diagnosis.

It’s extra difficult as we had come on holiday for a family wedding 2/3 weeks ago & he deteriorated suddenly following the flight. Then the MRI dash & admitted to hospital abroad. Then 20 hours of brain surgery without which my dad would have died within 3 days. Hospital here have been fabulous. But it’s a private one like most here. Thank goodness for travel insurance.

Dad had received a dementia diagnosis in the U.K. before we came away. We were told we could still come away & tests could wait till our return

We are lucky that my parents have a small holiday home here rather than holed up in a hotel. And lots of family here which is nice.

Also doctors here are amazed he survived the flight over. It could have been worse.

Now we need to wait whether he’ll be fit to fly back to the U.K. via air ambulance from hospital to hospital or if not having treatment & end of life here. With us all flying back & forth.

We can’t put anything in place in the U.K. as GP has said dad needs to be admitted in U.K. & assessed there before going back home. It’s just a waiting game to see if he needs to stay here or if can fly back.

We are able to see my dad daily once out of icu & have to have a pcr test daily to do so.

to everyone.

Hope this isn’t too rambly (?) just all so confused.

Oh gosh @EmotionalRollercoasterMess
That sounds awful.
Thinking of you and your family
Hope you get some answers soon

Thank you - it’s a bit stressful not going to lie especially on the days we haven’t been able to do the pcr night before.

Our usual day is leave here 7.45 to go to do pcr at hospital. Return at 10. Leave here at 2 to go back, to visit my dad. Return here around 7.30. Rinse & repeat.

Occasionally if the nice receptionist is on duty we do the pcr as a special favour before we leave after visiting. They are only valid for 24 hours so need to be done within the time frame.

But we are lucky that we made it here so small mercies. And lots of family here in between & after the above time slots!

Oh blimey @EmotionalRollercoasterMess that sounds really stressful. Sending best wishes.

My poor Dad has caught covid and is not good. I had to call an ambulance for him on Friday, and he's been on a CPAP ventilator in our local hospital since. I'm waiting for the consultant to update me, as the nurses seem to be suggesting he's doing 'ok' but the consultant at the weekend told me he was on a knife edge really. Get snippets from the nurses ever day, but would be good to have a bit more detail. But obv don't want to ring all the time when seemingly there's not much news.

So upsetting really after coming through 12 months of shielding, and then chemo, that he's now so poorly.

 @ethelredonagoodday that's tough, especially when you can't reallly tell how he's doing. Fingers crossed the consultant updates you with some news soon.

@EmotionalRollercoasterMess I'm so sorry, it's a tough diagnosis to come to terms with at the best of times, must be so much harder being abroad & not knowing the near future. Hope you get some info soon about your prospects. 20hours of surgery is a lot to get through for your poor dad. Glad you have family support there. I find it really difficult when your normal life is replaced by a new depressing & exhausting routine. Try not to think too far ahead

Hi everyone

I haven’t updated for a couple of weeks but just popped on to say my dad sadly passed away last weekend. So this week has been a complete whirlwind of activity, grief and now that the funeral is past, bewilderment. Confused emotions of relief that his suffering is over but of course complete sadness of what we have lost and what we’ll never get back.

In the end he went to a care home for respite for what was meant to be a couple of weeks in order to get a care package. But it wasn’t long before the nurses there were updating me on changes such as mottling, increased pain and eventually lower oxygen saturation levels. We were called for to go there when he began having breathing difficulties and had about an hour with him that day before he passed. So incredibly sad.

I’m so sorry for what you all are going through.

@blubberyboo I am so sorry to hear about your dad.

Mum was moved to a hospice as she had internal bleeding and they suspected and they expected that she could suddenly die. In the end she stayed almost 4 weeks and the hospice discharged her home to my brothers. We had the option for her to go into a care home but opted for her to come home.

Feel so much in limbo with so much uncertainty of how long we have. We all seem to be in a perpetual limbo which is very hard. I feel so guilty for thinking this when I know what the alternative is. Emotionally it is so difficult as it feels like we are already grieving - I don't know if that makes sense.

@blubberyboo very sorry for your loss

@momentsofmagic

It makes perfect sense and you describe how I felt the last number of weeks. The anticipatory grief knowing that it is coming, that the clock can’t be turned back, conflicted with wanting the suffering to be over. Having your whole life consumed by the cancer and the care and not knowing how long it will go on for.

Now that it’s over all I feel is sadness and grief when I look at my garden where he sat, or being in his home and wishing it had all never happened.

@MaryStuart
Thank you so much

Thinking of you all x

I'm so sorry @blubberyboo

@blubberyboo I’m so sorry for your loss.

My dad seems to be improving very slowly. The thing is at some point within a few months we expect it’s going to recur & so it’s a case of when not if. And if we can make it back to the U.K.

Very small steps I think.

Blubberyboo
I'm so sorry.

Haven't been on here for a while. Completely understand what other posters mean about the anticipatory grief.

Hello 👋 I hope it's okay to join.

My mum died from lung cancer last year (non-smoker, it was such a surprise), and my dad was diagnosed with pancreatic cancer in late January after turning yellow due to obstructive jaundice. It was stage 3 borderline, no mets, at time of diagnosis.

He had 6 cycles of folfirinox, and cyberknife treatment to try and shrink it for surgery, but at the end of September it was discovered it has spread to his liver. It's now considered inoperable and terminal.

He's on the first cycle of gemcap, but he's been pretty erratic about taking the pills at home. It causes so much strife if I ask about that, though. He's also lost an alarming amount of weight, I'd say close to 30% of his body weight. I spend most evenings and weekends at his, watching him sleep and grimace. He's very chatty when he's awake, though, which is something at least.

Hi @crumblecrimble
My Dad has lung cancer.
I know what you mean about a surprise. He had no symptoms. He has lost an awful lot of weight, it’s such a worry isn’t it.
Thankfully he’s responding well to his targeted therapy treatment.
But it’s very much a temporary thing.
Sending you and your Dad good wishes crumble

And 💐 for you for your Mum

Sorry for your loss @crumblecrimble I'm sure it's hard to watch him grimace.

My mum has been on this bizarre plateau for so long, somewhere between here & not here. I feel myself feeling so down lately & everything seems so pointless. I can't imagine Christmas either with her still being here or not being here. We've planned to go away to in laws for Christmas & that's looking a lot less likely

Just checking to see if anyone else is still about & how are you coping? Moving into December is a tough step. Thinking of everyone else in this boat

Still here @buckeejit and thinking of everyone (sadly) in our boat

I have had a pretty dire couple of weeks to be honest.

When I last posted my Dad was on the covid ward. After that post he gradually improved day by day to the point whereby the following Friday, he was off the ventilator, eating, walking and looking like discharge wasn't too far in the distance. And then, on the Saturday he took a turn for the worse caused by conflicting meds (mainly thinners) for covid and his other conditions resulting in complications, and by the Sunday morning, we'd be called in to say goodbye. Luckily my brother and I got to see him, and hold his hand as he passed away, but it was such a shock after he'd been doing so well. And feels so unfair.

So now in the midst of arranging the funeral, which is next week. Is heartbreaking to be honest. Bloody covid!!!!

Oh no @ethelredonagoodday, I’m so sorry that’s awful 💐

ethelred, I'm so sorry about your dad.

Yes, still here. Found out last week that the chemotherapy has done pretty much nothing to help. Bit of a shock. Especially when you find that they're now doing more scans to see if there are any new tumours. Very depressing to find that while you thought/hoped this horrible treatment was reducing the cancer, it was possibly doing nothing and the cancer was just spreading more.
I find myself trying to bury my head in the sand such a lot of the time.

Hope everyone else is holding up okay.