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.

I feel like he's deteriorated since yesterday.
Completely weak and worn out, the itching is getting worse - even though antihistamines were prescribed they're not working and he's sweating profusely to the point his bed clothes are wet.

Can you call the nurse cancer team and discuss this with them? Ours has been really helpful and responsive

Yes I called the cancer nurse first thing. She's given me lots of help and signposted me to where I need to be calling in terms of helping him.

Dad found that Famotodine was helpful in terms of sweating (it's a stomach ulcer med normally but it helped the nausea and the side effect was it also stopped sweating), and the itching was best helped by aqueous cream with calamine in. It was about £3 a tube from the chemist and he had them everywhere!! I've still got one in my handbag ...

We found the GP was useless but the palliative care nurse very willing and able to try different meds.

GP has prescribed different antihistamines that's it. I honestly think he needs more care than he's getting right now. He's getting discomfort around the area where his liver is that he didn't have before.
I've just been to see him and he is trying to act 'Normal' but I can see just how tired he is, the jaundice is no better and he's breathless.

We're waiting on a biopsy appointment - I'm just hoping they don't take too long in sending it out.

You can phone the central booking office and push. Or phone the Oncology department if that's who he's under. I am the quietest soul normally but I found a very loud voice when caring for Dad. I had to, otherwise he'd have disappeared into the system.

This is what I fear will happen, I'm not prepared for him to wait any longer than he has to, this should have been done on Friday but they discharged instead and told me appointment will be in the post. As things have gone on this weekend I have realised I need to push for it.

How is everyone holding up this weekend? We have been on an absolute rollercoaster in the last 24 hours with dad being admitted and given hours left and hurriedly trying to sort his funeral wishes and affairs to then being told the problem wasnt the cancer but a new problem that they can treat and he will be discharged home. He really does have nine lives.

@unicornsarereal72 gosh that sounds pretty exhausting!

Still trying to come to terms with losing Dad. The sadness is truly overwhelming at times, and I find it comes in awful waves that literally knock you off your feet.

Wow @unicornsarereal72 - what a rollercoaster for you all.

Feeling much the same as @Badger1970.
Three weeks since Dad passed away.
We had his funeral today. My daughter did a tribute to him. I'm so proud of them.
I miss him so much.

Thinking of you both. I'm part of a large family. But we all came together and showed our love and support for dad. Mum and each other. I'm so fortunate to have the gift of more time. For how long we don't know but I'm very grateful. Although work are going to think I'm making it up as he keeps being at 'deaths door'.

.

This week hasn't been good. Ambulance called 3 times, re admitted and discharged but still no wheels in motion for tests that they said were urgent.
My DDad is deteriorating, pain has increased, he's sweating, and is incredibly weak and can't walk far at all before he is out of breath and his legs start to give way.
I'm tired of trying to chase things up and get him the care he needs, I just keep hitting brick walls.

Pressed send too soon. I'm getting stressed out and am having trouble sleeping, today I've had palpitations all day on and off. I already suffer with anxiety and I don't want it flaring up because I don't know how I will cope.

Is he still in hospital? If not I would get him back there and refuse to leave until tests are done. I'm so sorry you are having such a difficult time. We found once we were in the cancer care team. They were amazing.

No it was hard enough to get him to agree to go back in as it was. Once he went back we thought things would start to move. He won't go back again they've done f - all since he first went in almost two weeks ago, they've left us with no support or guidance. I'm so annoyed that the test he needs and we were told was on the urgent list for still hasn't happened nor an appointment made. I fear he isn't strong enough now for this to be done.
The system is going to fail him, I know it is.

@Bluemat it's a very broken system and heartbreaking to have to try and push your way through. I'm so sorry you're having to do the same as I did.

Have they said why they want a biopsy? Dad was diagnosed by MRI and blood tests.

Biopsy is to determine whether it's primary or secondary liver cancer. I genuinely don't think we're going to get as far as it being done.

@Bluemat I would try the Oncology team at his hospital. The receptionists in there are incredibly used to distressed calls from relatives, and once I made contact with them, things happened much quicker. Worth a try at least? The Consultant there passed Dad straight over to the palliative specialist team at this point rather than taking further time with tests etc when they knew what the outcome would be. I'm glad in hindsight that Dad was spared all of that.

He isn't even under an Oncology at the moment. As far as I know it's a Lung consultant he is under and that's it. They've said during his last hospital stay that the Liver is the main issue but still nothing has progressed in terms of treatment.

During his last stay he didn't even get placed on a ward A&E then Acute medical unit then home. He should never have been discharged the way he is. Tomorrow I think I'm going to have to start shouting from the rooftops to get things moving before it's too late - if it isn't already.

Oh gosh, that's horrendous

It is the most awful situation I feel like he's just being left to go off their grid.
His jaundice is worse again today and he's just sleeping all the time, he hasn't even got out of bed other than to use the bathroom once or twice since yesterday afternoon. He's failing in front of my eyes.

I hope you can get some help today @Bluemat in whatever shape that takes.

I'm still reeling with exhaustion from it all, and Dad passed away just over 2 weeks ago now. I've never felt such bone tiredness in my whole life and I am sure it is from the constant worry of Dad getting adequate care/medication.

So far I've managed to speak to a GP and they're doing a home visit today or tomorrow to get the ball rolling in terms of a palliative care nurse. Dad doesn't realise he's in palliative care - he's going to be devastated when they suggest it.

I can imagine you're tired @Badger1970 im exhausted from trying to sort it all and work and be a mum.

Echoing what @Badger1970 said.
I'm a week ahead and I feel like I need to curl up under a blanket for a long snooze.

I remember when Dad was visited by the palliative care team. They were so good in how they explained things. I can't thank that team enough.

Keep talking on here if you can and want to. I'm a mum to 3 teenage daughters and work full time. I was fuelled by tea and some very unhealthy food options through it all.

Did they manage to visit today? Love to you and your family.