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]

Thanks @BloodyMaryisthetruth - starting on Wednesday. Had an appointment about it all today but were told he shouldn't start the actual chemo until he's been talked through the regime by the nurse specialist. I was a bit disappointed to be honest - we'd assumed he'd come home with everything he needs to get going immediately. But what's another few days I suppose...

The real kicker was having to give him an injection into his buttock tonight without having been shown how to do it. I'm not stupid and the instructions were clear (and YouTube helped) but it was still a shock to find yourself sticking a pretty hefty needle into your DP's bum!!! Poor love. He said it was fine bless him :)

Well remember MrW coming home from surgery and having to inject some anti-clotting agent into his stomach - for 30 days. The tough woman in me took charge but the little girl was so relieved when it was over.

@WobblyLondoner so frustrating as you've waited so long as it is. We had a similar process at the start, nurse specialist chat (haven't seen her since) and I did one injection it was hideous I was terrible and he protested so much I never did it again, the distict nurse took over and then they stopped anyway as whatever it was ended up causing him bone pain or something. For digestion he has lots of Creon that still sorts that out but don't know if its relevant in your DHs case. Be thinking of you both tomorrow, let us know how you are.

Such an awful day - DP in a lot of pain, the worst since he was diagnosed. Turned out a few things didn't go right yesterday - we didn't get given the details of who to phone in an emergency (have them now) and we would have been better advised not to go ahead with the injection until he had creon (it was out of stock in the pharmacy). BUT they couriered some over and a lovely nurse talked through pain options so I'm hoping the stomach ache will calm down soon.

It's been a shocking day really - the first (for both of us I suspect) where we realised what our next few months are going to look like.

But my DS got an offer to study at the uni he really wanted to go to - so that was a lovely bright spark.

Yes you don’t realise till you’re doing it just how bad it can be. I’m glad your ds got his preferred choice though.

It's when you're in the eye of the storm, you just keep going, only afterwards do you realise how bad it's all been. Hope tomorrow is better x

Oh @WobblyLondoner so sorry to hear this. It is a shock for you both but there will be better days. You will get through you won't know how but you will. With my DP the creon really helped with stomach and digestion pain so I'm hopeful that will settle. We never got told how many to take or how though so took weeks to get it right. They are also a total pain to get hold of. There was a time due to pig disease in china or something supply chain issues meant a national shortage and we thought we were screwed! Also he was bad a keeping them stocked so I used to siphon off a little hidden emergency supply of about 20 just in case! Even now we have to phone round multiple pharmacies often. In the beginning he often used to take double the prescribed amount with each meal to ensure weight gain as he lost so much when first diagnosed (advice from a lovely specialist surgeon in Birmingham who miraculously messaged me back on Linked In when we were desperate for advice!). Congrats to your DS that's wonderful news. Keep us posted if it helps but please don't feel obliged.

Hi @notapizzaeater so so true. Your previous posts have really helped me just want to say thanks.

The comment about a stash of drugs has reminded me that when DH was on 7 or 8 different drugs daily, some of which were hard to get because of supply issues, I sometimes felt that I spent half my life queueing in the pharmacy. Most of them were prescribed by his GP who wasn't willing/able to prescribe extra, but his consultant was perfectly happy to write him up for a small extra supply that I could hold for emergencies. So it's worth asking someone other than your main presciber if you're regularly running into problems.

Yes to spending half your time queuing in pharmacies. So much so when I've needed to go in again for something minor for myself or my son I've almost been embarrassed, I've no idea why! Weird. Honestly with all these things learnt from trial and error we could probably start a second career as some sort of private cancer doula I wonder if they are a thing.

Thanks so much everyone. The Creon made a huge difference and today he was back to his usual lovely self. He 'celebrated' by officially starting chemo...

From the way the three staff members we've spoken to since the physical appointment on Monday I suspect some things that should have happened then did not. For eg we should have been given a specific emergency number that always gets answered. One of the nurses called today to see how he was feeling and sounded horrified I'd had to give the initial injection. Etc.

But we are where we are - and reassuringly all the people I've spoken to since have been excellent. And he's feeling that much better - he's like a different man to yesterday.

That's such good news about the Creon helping.

For the rest, it's horrible to think you were without support because a basic service wasn't provided. And how would we know the right questions to ask?
Maybe we could compile a list between us. 'll start:
Can we have a second opinion?

Good idea @Willowkins. Mine would be:

Who do we call if we need to speak to someone urgently? Will someone be able to respond to that call quickly?

(If something you are prescribed is not available): does this not being available mean we should do anything differently in terms of other prescriptions? Ask the consultants and the pharmacist.

Can we meet someone from the specialist nursing team now - (if they are not in the initial consultant meeting with you)?

@WobblyLondoner so pleased to hear there's such an improvement.

@Willowkins and @BloodyMaryisthetruth brilliant idea, (well not the second career but the concept). I'll add
I'm going to write all this down if that's ok
So what happens next is ... .... ... Is that right? When can we expect that and what do we do if it doesn't happen?
There are lots of people involved in X's care, who is responsible for what?
How do we contact you if we have any questions?
Can we have a referral to the palliative care team? (highly recommend this as they have easy access to a whole load of things you didn't even know were available)

Not exactly questions, but things that turned out to be useful
Use Alexa as a reminder if you have a complicated medication schedule
Alexa also useful for someone confined to bed and exhausted, use to listen to radio, make phone calls etc without having to make extra effort or wait for help.

Changing the subject now - I'd welcome any thoughts you have on avoiding infection. It's obviously so important and we got given a lot of information about what to do if we think DP has an infection - but what have you done to reduce the risk of your partner getting one in the first place. Do you wear masks on public transport for eg (he will try to avoid it but we live in London and don't have a car so I do have to use it to travel to work for eg)?

Ps @MontyDonsBlueScarf - DP and I were taking about Monty D's blue scarf just the other night! He has such a lovely collection.

I would just add ask about their data sharing agreement if any, between all those involved in care. For example where we live it took us three years to find out the oncologists system the chemo unit system and our GP systems are not integrated so they have no visibility on what happened on last contact at each place,you have to tell them all yourself each time. Twice my DP has been prescribed medication incompatible with medication prescribed by the oncologist,the second time luckily we held back starting it til he'd had the check up to ask. Madness.

I used tell myself before each treatment I had to get the house 'chemo clean' and stay away from people with colds etc but having a school age child and gone through the pandemic we've given up and don't give it any particular thought at all now haven't got the energy just getting on with things rightly or wrongly. If you can control exposure it may be worth it until he is stronger in himself but there's no way we can without depriving ourselves of daily life and social activities. It's such a personal choice though and if you choose to be careful people around you should respect that.

Agreed, and even if it is integrated it can take forever for paperwork to be updated. I got into the habit of automatically forwarding copies of DH's consultant's follow up letters to the GP, who was always grateful as they arrived on his desk weeks before they arrived via the system.

I've said this before, but I always found that seeing my role as 'project manager' really helped keep everything on track without getting in the way.

@WobblyLondoner (re scarf) I never thought I'd get a good chuckle off this thread so thank you!

We also set up the skill on our Alexa to talk through CPR - it's one of those things you hope and pray you don't need but in an emergency it would have been priceless.

I'd also push for a referral to the hospice even if you don't need them - they have access to a whole load of stuff the others don't and when DH was in pain they where the only people that managed to get on top of it. Our hospice has lots of holistic things and has people to talk to who 'get it' we couldn't access lots of this stuff that would have been so helpful as it was during Covid.

For the infection risk - we got told at the beginning that If DH got Covid they would not be able to treat him so we masked up everywhere but when the world started opening up DH wanted to get out, enjoy the time he had and be normal - I was twitching tbh but we did and I just backfilled with zinc, vit c and magnesium (check with the doctors)

We applied for PIP which was really depressing for DH but it really helped (and a blue badge) - Macmillan can help with this but I do it in my day job so was relatively easy.

We had 2 whiteboards on the fridge - one with current meds on and one with all the important telephone numbers on

Infection control; no takeaways was one of ours when he was on Gem/Cis.

So much useful info!
111 is also your friend if you need quick advice. They can send out nurses, doctors and paramedics if needed.
I'll add get a good thermometer because that will show the first signs of infection and when to go to A&E.
PIP will also get you Carers Allowance if eligible - the main condition is that the carer earns less than the threshold (currently £139) per week

And we also had 2 hospital bags ready (but like maternity bag) - one for overnights, pj's, toothbrush etc and 1 for day appointments - chargers, battery packs, lipsalve, snacks and drinks.

Once we'd those we never went to the hospital without both, I'd leave the overnight one in the car till I know if we needed it.

This is hitting home how unusual all this stuff is now I see it written down, living like this for years can't be healthy I'm prob heading for a nervous breakdown or mid lif crisis in future. For the first year we didn't have bags packed but I'd always sleep with my handbag next to my bed stocked with all waiting room necessities and clothes folded neatly in case I had to jump out and get in the car during the night, it's weird when you look back. Dread going back to this level of alert if things get worse again soon.

That brings back so many memories. I'm convinced that along with the waiting and the trying to fix everything is what started my PTSD.

I've said it before - caring for a partner with cancer is its own special hell and noone can understand how bad it is unless they've lived it.
Counselling has helped a lot.