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.

We're hitting bit of a brick wall with care now my dad's out of hospital. My mum and dad consented to him being released from hospital without the care package fully in place, but we assumed it would be sorted by now. Wrong. CHC hasn't responded to any of our messages, so when his feet and legs swelled badly there was no-one but the GP to call, who sent the district nurse, who was aghast that there was no care yet in place. My mum has now had a call from a care company who are going to be sending carers from next week, a full two weeks after he was discharged. Also, I'm not sure carers are going to be suitable- shouldn't nurses be coming in? Anyway, that's the 'care package' that CHC have arranged. The district nurse is coming again tomorrow and my mum is going to discuss it with her then.

Hm I wish I could reassure you with the carers. Some are great and experienced, but a lot aren't and are in a hurry to get in and out as quickly as possible. They only send nurses for medication unfortunately, not care, unless you find a hospice that runs an "at home" service or you can get McMillan/Marie Curie nurses to visit.

It helps being organised for the carers - having everything laid out visibly so they don't have to keep asking saves their sanity and yours! I had a white board in the bedroom by his bed saying what he wore, what creams to use etc and another in the kitchen about medication (they could only pass Dad meds from a dosette box that the GP has to prescribe) and what he liked to drink.

Hmmm. Thanks @Badger1970 . Thing is, they discharged him with a shit-ton of injectable meds eg midazolam, none of which he needs yet. But who did they suppose would be administering them?!

They give you those for paramedics/district nurses/GP to dispense so you've got them in the house. Dad had a "just in case" box from the pharmacy with anti-emetic (levomepromazine), midazolam and morphine as well as something to deal with secretions building up in the respiratory tract. It's good you've got them ready.

Thanks @Badger1970 . What what I do without you?

@Badger1970 was a huge source of information and support to me when I needed it. Our situations were very similar.

The medications you've been given are 'just in case' meds and like Badger has said it is good that you have them. When they're needed District nurses or paramedics can administer them. I had to fight to get them for my Dad, unfortunately he went into a hospice the day after we got them for him. So we didn't need them in the end.

I wish I didn't know what I do, but I'm happy to share it. I don't think I've ever felt so powerless or helpless when Dad was ill and it helped me no end to be able to ask questions on here.

Thanks both. It's a shame medical staff don't explain things better to the families.

Fingers crossed the carers are a help. As others have said you won't get qualified nurse in and out to do personal care. Do you have the support from the local hospice? They are a wealth of knowledge and information and can support you all going forward.

Sadly you will have to keep pushing to get things going. It is just the way it is these days.

@unicornsarereal72 the hospice nurse called my mum for the first time the other day, but my mum seems to get so muddled with all the calls (despite only being 69!) that she wasn't really clear what, if anything, she was actually offering in the way of support. My mum isn't coping well with anything and what with not being able to drive either is putting quite a lot of strain on my sister and I. She didn't cope that well with anything before all this.

@InSpaceNooneCanHearYouScream
My mum is a little younger than yours and she couldn't retain any information. She completely went to pieces and couldn't remember a thing. I had to take on the role of doing/sorting and trying to organise everything. I could see how difficult it was for my Mum to handle. My Dad really was her whole world and all she could focus on was him and not anything else. It is tiring and it is trying at times but I'd do it al again in a heartbeat for her.

Joining you, if that’s OK? So sorry for what you’re all going through. My lovely Dad also has bowel cancer, awaiting full results of staging but there are a couple of nodules in his lung on X-ray. He’s had a PET scan to see if they’re old scars or malignant- but whatever the result he’s having 3 months of chemo before surgery.

I’m a doctor by training, so having to hold myself back from bombarding them with questions. I live 5 hours away so I’m totally stressed about him and Mum. They’re mid eighties but incredibly fit and totally independent up until now- I suppose I fell into the trap of thinking they were invincible.

@cathyandclare sorry to hear about your dad. Must be hard being so far away. I hope you can get all the information you need. My dads cancer care team were amazing and my sister was our translator. She is our point of contact with all professionals.

@InSpaceNooneCanHearYouScream it might be worth you giving them a call. Out local one offer counselling support for carers. Coffee mornings and space to talk to others ours also has volunteer drivers. So might be something your mum can do to get some space for herself

Like others have mentioned my step mum has no capacity to do much else than be there for dad. And she is doing an amazing job. So we are doing our best to do all the 'leg work'. We can. We have sorted out their affairs. Clean for them and my sister does all the phone calls/deals with professionals. We are all stretched with work and families etc but wouldn't have it any other way. It's our time to step up.

Hi all, turns out I’m taking this news all in my stride but struggle to read this thread. It’s the reading of death, palliative care etc - I am so so sorry to those of you going through such horribly sad times. I know they’re likely not too far off for me but I’m not ready. I’m currently in my in denial phase, I went home recently and it’s just like she has a stomach bug.

My mum started chemo and honestly looks so well, she’s amazing. Imagine she’ll lose her hair soon and I think that will make it more real. For us, It was a week of celebrating small wins. She walked into the village this week which is massive. She can feel one of her tumours and can feel that it’s smaller. Even if it’s not I hope the positive attitude will take her far. Again her bravery throughout this all is amazing. She was sick for the first 5 days on her tablets but thankfully that has now passed.

Annoyingly I should be home with her now but I have a cold, waiting for that to clear before I head back for a week. The distance is horrible but at the same time the separation means I can separate my home/work/social life and mum is ill life. We don’t do much when I’m back, I sit on the sofa next to her and work hah. But being in her presence relaxes me.

I’m not sure if anyone else had the same experience - she did her NHS bowel screening kit earlier this year when we were in the process of the diagnosis, the “all clear, no further tests needed” letter came through post Stage 4 diagnosis. Absolutely mad. Told her she should take the letter to her oncologist and let him know it seems that she’s cured 😆I hadn’t realised that those tests were so ineffective. I’d encourage you / friends / parents to listen to your body.

To those of you with parents struggling to retain information - I’ve been encouraging my dad to record meetings on his phone and then he can listen back if he’s not sure of facts. Having sat in on a few doctors meetings with my parents I can see how easy it is to lose track of the details, its so overwhelming.

@PeachTea1 I don't blame you for how you feel at all, your mum isn't at the palliative stage and might not be for a long long time hopefully- certainly none of us 'on the dark side' wish you were here and hope you don't have to join us. I hope you can stay far away.

But the people here are great when you need them.

Good to hear your mum is doing so well @PeachTea1 - my Dad started chemo yesterday, so early days, but holding up so far. Your mum may continue to do really well, it’s encouraging that her tumour is shrinking. I’ve sort of gone into calm and dispassionate ‘professional’ mode- which helps me cope, but I suspect is driving my brother mad.

Can I ask anyone how their parent was during recovery from surgery for bowel cancer?

My parents (around 85) have always planned to turn a lovely large living room into a bedroom with accessible bathroom if they become less able to get around. He’s mobile and well now with some hip arthritis. However, he’s currently having 4 rounds of chemo then excision surgery in June. They have steep narrow stairs with no room for a stair lift.

My mum thinks they should wait until after surgery and see how he is- but I’m worried that it’ll be too late to do anything by then. They have lots of other downstairs space, and I think Mum only goes into the living room to dust every now and then!

I understand their dilemma- it was easy to make contingency plans when they were both totally well, but horrible to have to carry them through. Was your elderly parent able to get up and about after chemo and a bowel resection?

@cathyandclare

I'm sorry to hear you and your family are in this position. Temporary solutions can be put in place by OT and district nurses. What is the likely outcome after surgery. We have some work being done in my parents home but in all reality it is unlikely my dad will get to use them. Once his mobility has deteriorated that he needs to be down stairs it is very likely he won't be able to use shower etc. so a commode next to his bed is mostly likely to be more accessible. And bed care going forward.

If a downstairs bathroom can be done and enhance the home going forward then I would encourage them to consider it but not in a way that is for your parents needs if that makes sense.

Hope everyone is doing ok. We are ticking a long and so very grateful for each day but dad is struggling. Eating less and not wanting to go out anymore now.

Hi all, I hope everyone is ok.
My dad has now been home from hospital for a month. He was doing ok for a while but things are not so good at the moment. His legs and feet have been horribly swollen and have been getting dressed regularly by the district nurse. This week one of them has got infected and he is on antibiotics. An infection is what landed him in hospital for a week with sepsis a month ago, so we have been waiting with bated breath to see if the same thing is happening this time or if oral antibiotics is enough to gel rid of it. This time around he is weaker generally though, now it's becoming really difficult to get him to drink enough, and he's having trouble swallowing. The district nurse had nothing useful to say and there's no chance of a GP home visit on a bank holiday Monday.
My mum phoned the hospice and spoke to a staff nurse who just gave general advice about his symptoms.
Not sure where to turn really. He is miserable and moaning all the time and not enjoying anything. He would hate going into hospital again. I think he's quite close to hospice stage but who would decide this? And again, he'd be devastated.

Hi. Hoping it's okay to join. My mum was recently diagnosed with Ovarian cancer. No other information but she's been ill for over a year (GPs kept saying nothing was wrong) and the GP who called last week seemed very negative. I have a sense of doom that this is going to be very bad, very quickly.

Does anyone have experience of caring for parents who live away? My parents are over two hours away from me and my sibling. My dad isn't really capable of looking after mum. Has anyone moved parents nearby for treatment? Or can offer another solution? I don't want her to be alone but we both work full time and have young children so it's very difficult.

My dad's back in hospital. We assumed infection from his ulcerated legs was making him really ill but actually the consultant confirmed yesterday he has hypercalcaemia, dangerously high blood calcium, not unusual in end stage cancer patients. He is incredibly weak, very confused, falling asleep mid sentence, he can barely talk. He is on 5 days on IV antibiotics as he does have underlying infection too, and lots of fluids to try to normalise his calcium. They expect to be able to bring the levels down but they will rise again.

He has no desire to carry on like this and it's agonising seeing his poor body struggling on day after day. But we have tried to explain to him that he is not receiving any treatment to prolong his life, we're just trying to help him feel as well and comfortable as possible.

@Bluemat @Badger1970 did your dads have any calcium issues that you know of? And how are you both feeling?

@InSpaceNooneCanHearYouScream I'm so sorry to read your update. I think we were quite fortunate in that when Dad was admitted to the hospice and then the nursing home, the decision was made to stop any blood tests/investigations etc as nothing was going to really change and we didn't really know what was going on. As his cancer progressed, he was incredibly sleepy and the palliative care consultant explained that all of his energy was going into the cells in his body so he talked less, and was less aware of what was going on around him. In his last week, he wasn't really aware at all and was really just reacting to the increasing pain. It was as if he was already distancing himself from us in an odd way.

It's been very bittersweet watching the coronation today - my grandfather was a grenadier guard and Dad would have loved watching the military parading. It's a cold reality that every event like this when the family are all together, one of us is missing and I'm really feeling it today.

I hope you're looking after yourself as well as your Dad

Thanks @Badger1970 . Today my sister is doing the hospital run so I've just been sitting in a crumpled heap watching the coronation . My dad is clearly hovering around hospice stage- we were talking to the very lovely palliative CNS about this yesterday, but it seems no decisions will be made until a few days time to see how he responds to the fluids and antibiotics. But I honestly am dreading him going on in this state. It's awful. But I don't need to tell you that.

@InSpaceNooneCanHearYouScream don't be afraid of the hospice. The one Dad went into rarely had people in for end of life surprisingly, most of their beds were for symptom management/pain control. They were brilliant with Dad and he was literally so much better in days to the point that they wanted to discharge him. It's all they do and are far more specialised than hospitals IMO. It's just the shittiest thing to go through for everyone

Can I join?

My dad has a 'malignant looking polypoid lesion' which was discovered by sigmoidoscopy following an episode of bleeding. We're waiting on biopsy results, CT scan and full colonoscopy to get the full picture but I'm currently struggling - today has felt like the longest day ever, I'm not sure I'm how I'm going to get through the week.

We are no strangers to bowel problems with dad, but honestly that's making it worse because how on earth can he have had a bowel resection, ileostomy and then reversal and no one noticed a suspicious looking polyp?