Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

Hello lovely people. Wondering about everyone's experience of partners on steroids while having treatment. Currently on edge as the smallest possible amount is lasting way longer than usual DP is sometimes excessively chatting repetitive incoherent forgetful and awake til til early hours and fidgeting all day. Oncologist is aware of these side effects they aren't new and have to plough on anyway. Minor issue but one am confused about as I've no frame of reference and finding increasingly worrying.

@BloodyMaryisthetruth DH was on steroids for about 18 months and I don't recall the reactions you describe, so I'm sorry I can't help. But for this kind of concern I'd be speaking to a specialist nurse, either from the hospice or from the charity specialising in that particular cancer. A lot of the charities have a dial-a-nurse service on their website. They'll have very wide experience and they'll probably have more time to talk to you and get to the bottom of your concerns. At the very least they'll be able to tell you whether it's worth continuing to get back to the consultant about it. Good luck.

We didn't have those side effects, we just had the hunger (was brilliant as he was dropping weight !) and the buzzing all day long

DH was foul on steroids, absolutely foul at times but did work very hard to reign the foulness in. He didn't get the hunger but they did put him in a dark place.

Thanks everyone. He used to get very aggro but doesn't anymore and doesn't get hungry but very down afterwards too. Trouble is he doesn't have an idea what he is like himself often has no memory of things after and thinks he is doing great which he is physically but clearly isn't right when you talk to him. Thanks for the suggestion I will ring the pan can UK charity and see if they think it's worth mentioning again to the oncologist. THe last clinic was a telephone appointment I could hear him mentioning it but he really played it down. I almost don't want to tell him what he's like as it will make him feel worse.

MrW would say whatever was going through his head. It's definitely a thing. Fortunately he was was quite funny and hardly ever weird.
He also got steroids-induced diabetes which came out of the blue.
The MacMillan nurse explained it that, yes there will be side effects from the treatment, and we can give him different treatment to fix the side effects, but that treatment might also have side effects.

We ended up with a whole kitchen cupboard full of his meds.

@Willowkins saying whatevers going through his head is spot on. Just comes out of nowhere and goes on and on. Then 20 mins later I pass and it the same thing on repeat. Not unmanageable by any stretch just wondered if I should be mentioning this and other things before it may turn into something. Having you all share your experience is really useful info thank you x

I've been a lurker for a while and haven't posted. I gained much from reading though. Thank you. DH is on steroids - he weighs less than 8 stone and they've helped him to eat more and given him a bit of energy - but it's only been 2 weeks. I have also noticed a change in the way he acts - a bit more aggressive. But it's slight. (Dx Stage4, lung and now bowel, liver, bones).
It;s very hard.

Hi @daffodilsandredwine sorry to hear you are going through this, how long has he been ill? Thank you for sharing. It must be very hard yes, I've found this thread really helpful don't need to hold back here and you can ask anything.

Hi @daffodilsandredwine - welcome.

My DH was already type 1 diabetic - they played hell with his blood sugars so we had to do much more monitoring. Whilst he was on the steroids his 'aches and pains' disappeared so he was in a much better mood.

Thank you for the welcome. We'll just have to see how it goes. But like everything it's a balance.

He was diagnosed last January (2023). First chemo was March 23 but it made him very ill. They reduced the dose and he was lucky to be suitable for immunotherapy and honestly, for six months he was great. Still losing weight but so much better - able to work and live well. But, as we knew it would, he got worse again with tumours in different places - the bowel mainly and the liver.
He's been really very unwell since Christmas - and there's not much else they can try.
Kids are young adults but it's not easy for them.
I'm working - but have asked my boss what the options are for later. This thread has helped me understand what might happen - and I've valued that.

I'm so sorry to read everyone's stories - especially those that are young or have young children.

Joining in just to whine, really. There is nothing that can be done. My wife's lung cancer mets>brain/bone/liver/everywhere is moving very fast. Carers coming in 3 times a day, and me and her daughter giving her morphine every 4 hours, including thru the night. In one her few lucid moments, my wife whispered that she wished it was over.

Last night, my wife managed to fall out of bed, despite the bed rails, and when I found her on the floor this morning I thought she was gone. My step-daughter and I couldn't lift her, but a nurse-carer came very quickly.

So, we are on death watch. Sorry if I'm depressing you all. I am strong one minute, in tears the next. I couldn't do it by myself, but the children (all in their 50's) are wonderful.

@CanadianJohn I understand what you are dealing with as my husband is in a similar state, sadly he is only in his 50s. It is very difficult and I am awake now trying to work out how much longer I can keep him at home. Do you have options of Hospice Care? I want my husband to go to the Hospice now but he wants to stay home and his sister (who lives overseas and isn’t coming to see him) is pressuring me to keep him at home, saying myself and my son, who has many of his own issues, should be able to do this. She is really making a terribly stressful situation so much worse with her messages 😕. I can’t sleep with the pressure this is putting on me.

@CanadianJohn I'm so sorry. I'm glad you have support and quick access to a nurse. Sending strength.

@Timesnearlyup his sister hasn't got a clue (though to be fair, none of us did until it happened to us). I can understand that you don't want to just stop talking to her, but can you tell her that she's not in a position to assess the overall situation and decide on the best thing to do? At this point even the medical staff rely on the main caregiver for additional information on which to base their decisions, you are there all the time and see things that they don't. The idea that someone in another country knows best is just laughable.

Is there anyone else in the family who has a better idea of how it is, who could tell her to back off? At the very least can you tell her that she's stopping you sleeping and therefore seriously impacting the care you can give your husband, and taking away the chance for both of you to spend his last days together as a couple instead of as patient and carer.

What would happen if you just went ahead and arranged it?

@MontyDonsBlueScarf thank you. You have backed up exactly what I’m thinking.
I have to tread carefully as my other son is where she is and I need to keep a relationship with her for that reason. She has totally overstepped and even went as far as to tell me I’ll feel guilty forever if I send him back to the Hospice against his wishes. I’m in turmoil with the extra stress this is adding on me.
Dh had a bad night on Sunday and the Hospice and District Nurses asked the GP to prescribe a medication to relax him but the GP didn’t do it. We have injections here but would have to arrange for a Nurse to come and administer it. I’m going to try and follow up on the medication option again today as he was really agitated last night when the Carer came and I had to try and calm him. He was also trying to get out of bed, even though he can’t weight bare. It was very stressful.
I am considering blocking her number but she has to communicate through me as dh can no longer read or type messages. I set up a video call the other day when he had a surge of energy and she was trying to tell me based on that call how he should stay at home but he has deteriorated a lot since then. I feel really on edge now with the weekend approaching, as there are much fewer options for help on the weekend and A&E would be the absolute last resort.

It's so reassuring to hear people helping each other on here. Wishing you strength @CanadianJohn and @Timesnearlyup i would consider your current situation 'crisis mode' and feel no obligation to update other people just focus on your DH yourself and the care team moment to moment. You can catch up on messages once or twice a day and what happens happens. My DPs sister also lives abroad and when he was in hospital at initial diagnosis I would send detailed message updates from the hospital but she'd rarely even reply but just phone his mum who would then ring me etc and I'd be there with him all day just winging it as he was close to running out of options and the comms loop just added to the stress with hindsight they prob don't didnt need to know the half of it and there was no way realistically they could see what it was actually like and offer any useful advice.

@Timesnearlyup you really really REALLY don't want to be in a position where you need help and it's not available. That in itself is a reason for hospice now.

My DH took a turn for the worse between Christmas and New Year, I couldn't get help and it was utterly traumatising for both of us. After two days the hospice managed to admit him. He had said he wanted to stay home, but when I asked him if he wanted to go in, he said emphatically that he did. I felt bad at the time that I hadn't been able to manage, but when I saw that it took 3 nurses, multiple drugs with constant adjustments, and specialist equipment to make him even remotely comfortable, I realised it wasn't my fault.

I think it's common for people to want to stay at home, but when they get to a point when it's obvious that home care doesn't cut it, they change their minds. Does she want the best care for him or does she want him to suffer just so that she can say she did what he said he wanted when he had no idea what it would be like?

Just echoing others on the hospice care. MrW wanted to die at home but had a Plan B which was hospice. He adamantly didn't want to die in hospital. In the end, it was the waiting for someone to turn up with the pain relief that made hospice the better option for him. It was a relief - not just having someone there to look after him 24/7 but also the sheer array of drugs they have at their disposal. I was lucky the hospice was just 4 miles away so I could nip home and make sure the kids were okay (14 and 16 at this point).
Now I want to say something about trauma. Don't underestimate the impact all this will have. I can still his face at the moment he died but it would have been a thousand times worse if he'd died in our home.
@Timesnearlyup His sister doesn't get to decide what's best for You. That is 100% your decision.

Thank you for your messages @BloodyMaryisthetruth@MontyDonsBlueScarf@Willowkins I am already traumatised and know I don’t want him to die at home. I am up against him and his sister and even if I decide to request a Hospice bed, there’s no guarantee on when we would get it. If he was in any way willing to go, I’d request it today but he’s adamant he won’t go and they won’t take him in against his wishes. It is unfortunate he was admitted when he was, as he wasn’t ready to go then and developed a total hatred of the Hospice, even though it was a very nice place. The only way I could now request it would be if he lost consciousness 😢. I’m so worried about the weekend as if it gets too much or if he fell, I’d have to call an Ambulance. The position I’m in is causing me great stress, yet I feel I can’t make the right decision, no matter what I choose.
I have spoken to our Hospice Nurse this morning and she has written to the GP again today, requesting an anti anxiety, relaxing medication. She also suggested, they may be able to administer the medications through a pump. It’s so difficult as I can’t imagine he has long left, but nobody knows. If we get through the weekend, I’ll see how he is on Monday and request a bed if he doesn’t protest. Each day is like torture now and I just want it to be over for the sake of myself & my son who is at home with me 😭

That sounds awful. If he was unconscious or something else happened and you called an ambulance, would they take him to the hospice - or A&E?
The stress you describe is normal for the situation you find yourself in but it's not sustainable and you need support. Take the meds that are offered. If they don't work or make you worse, ask to try some different ones. Some charities offer respite care to give you some time out. Some hospices also offer counselling.
It's okay to look after yourself.

We made it thru the night. My step-daughter was the 'night nurse', and gave morphine at 4.30 am. My wife became agitated, and I got up at 6.30 to help re-position her and we gave my wife 2 pills for agitation, crushed into a spoonful of vanilla pudding. The morning carer will be here at 8-ish.

The hospice is full, with a long waiting list, and the local health authority is doing everything they can to help patients stay at home. If a patient has home support, people I mean, we can get (with some whining and begging) equipment, carers 3 times a day, a nurse every day, a doctor on call, and a phone number for emergency care.

My step-daughter is marvelous at dealing with the bureaucracy, and makes a better nurse than I.

@Willowkins the anti anxiety medication is for him, not me. For some reason the GP wouldn’t prescribe it in pill form, even though we have injections at home that a Nurse could administer. It would be much easier to have the pill as it could be given straight away, whereas with the injection, I have to call the District Nurses and wait for them to come, which could take a while.
If I called an Ambulance, he would have to go to hospital as you can only get a bed in the Hospice if there is one available. I doubt he’d even survive A&E
@CanadianJohn it’s good you have your step daughter to help. Although I have a son, he is a young adult with his own struggles and doesn’t help me really. He’s already so traumatised I don’t want to ask anything of him as when dh was first released from the Hospice, I asked him to watch his dad and he fell & hit his face on the floor and we had to call 999. Dh was screaming at us not to call and just kill him instead, so I said I wouldn’t ask my son to do anymore overnight care and the Hospice managed to arrange night cover from Continuing Health. This was supposed to be temporary but we still have it 3 weeks later. I cover the day myself but do have 2 visits from Carers. Most of the time I turn them away as dh can pee in a bottle & is constipated, so we don’t really need a lot from them.
our assigned Hospice also has a waiting list but it is prioritised on need, rather than time on the list. As you have your step daughter, they make have placed you lower down the list? I’m not sure if we would even get a bed if we went back on the list but if it gets much worse, I’d like to try.

@CanadianJohn I’m not sure if it would help but the way it’s been explained to me is they can put medication like anti anxiety, morphine etc into a pump and it’s automatically administered. This may save you getting up to give the medications? It’s what they are suggesting will likely happen with my husband soon.

@Timesnearlyup The .nurse is here now, he and my step-daughter are having a long discussion about medications. The home-care agency will supply a carer overnight, if neeed. As you say, with support at home, we are probably a long way down the hospice wait list.

There is also the issue of cost, from the governments point of view. Hospice care, with 24 hour professionals, is probably a lot more expensive than having the patient at home, with a lot of basic care being done by family members.