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]

It's awful to see your partner in pain - especially when it seems like the medical visits don't help and you've waited for ages. We had weeks of that and I was very close to the end of my tether when he went into the hospice for a couple of nights to get his pain meds on track. He didn't get back home but he was lucid and comfortable at the end. It simply was an awful time and my heart goes out to everyone going through that now.

Hello everyone, another reluctant new member here. We took my DP (58) to A&E this weekend as he had severe pain in his side. They did a CAT scan and then told us he has pancreatic cancer with secondary cancers in his liver (which was what was causing the pain). We just had a call from the lovely nurse practitioner who saw us to say they want to do a chest scan tomorrow and will be reviewing his case on Friday.

We had to tell our lovely 17 year old last night. DP seems to be taking it very well; I feel a wreck. Am trying to hold it together for DP and DS but it's hard. I'm so scared about what's ahead - both for DP and for us as a family. I'm the main income earner and, though work I think will be very accommodating, that's another worry too.

DP keen not to google; I want to know what we are facing but can't quite bear doing any research just yet.

I didn't want to start a thread so this one was great to find. My best wishes to all of you going through this as partners and of course to your loved ones.

@WobblyLondoner I remember that feeling of being in the eye of the storm when we received my DH's diagnosis. So just sending you and hope.

Thank you @DwightShrutesgirlfriend. I just can't stop crying.

Hi @WobblyLondoner, so sorry you find yourself here. Pretty much all the people on this thread have been where you are and you can be honest about how you're feeling.
This is the bit which resonated with me: that you're trying to hold it together for DP and DS but it's hard. I want to tell you that you'll cope because most people on these threads do and you sound like a competent person. Please put yourself first sometimes.
If you are going to Google, go to the MacMillan website https://www.macmillan.org.uk/cancer-information-and-support/get-help. It has a huge amount of information on all types of cancer and practical (including financial) advice. It is honest and will help you to avoid the kookier elements of the internet.

@WobblyLondoner My DH had cholangiocarcinoma, bile duct cancer, but he was initially told he had pancreatic cancer, if you ever want to chat just PM me

Hi @WobblyLondoner - we're all here to help if we can. Stay away from Google. This time now is the absolute worse - you imagine every scenario - once all the tests have been done and you will,have a plan / know options.

Thank you so much everyone, I can already see how supportive this thread is.

@WobblyLondoner you will cope, even though you have no idea how. Sending courage and strength.

Evening all. We've not heard back from the hospital yet - we were hoping his case would be discussed by the clinical team on Tuesday but assume as no word yet it didn't get on the list. The next review meeting is tomorrow apparently.

It is very hard waiting isn't it - he's had this huge, life changing, diagnosis and now we are just waiting in limbo.

DP is being amazing. I am waiting for it all to sink in however - I'm not sure it has.

@WobblyLondoner the waiting is awful - sending a handhold for tomorrow.

Thank you. He got a call to say he needs a biopsy (should have realised that really) and they'd get back to him with an appointment for that. So we know he is 'in' the system I guess. He isn't sure what the biopsy is of - he thought only the liver (whereas the scan had shown liver cancer was secondary).

I've so many questions but he's the patient. I'm trying to match his pace of processing this but I will need to be prodding and pushing at times (the system, and him perhaps), when I know he'd just wait.

Ask your oncologist if you can be fast tracked onto PIP if it has spread. You won’t have to do any form filling and it’s an extra few hundred every month.

Push and prod away, I did when it was my dh. It’ll be the pancreas they’ll biopsy, cancer that spreads is the same type as the primary site so his liver will have pancreas cancer tumours not liver cancer.

Im sorry, I know how awful this is to go through.

@WobblyLondoner Glad he's in the system and things are happening.

He's the patient, that means he gets the final say in what happens, not that you both need to process things at the same rate or that your questions don't need answers. I found with my husband that there was a long time when I needed to know more than he wanted to know. I had long private discussions with his care team and with the cancer specific charity, which helped me get my head around things without upsetting him. It also meant that when he eventually wanted to discuss other options I was well prepared.

I second the suggestion to ask about fast tracking for PIP/attendance allowance, blue badge etc. Macmillan did all this for us. You may not feel you need it now but it doesn't hurt to have it in place now, should you feel it would be helpful it later on.

He's got the biopsy on Thursday. He checked and it's definitely the liver - I wonder if that means the scan was sufficient to diagnose the pancreatic cancer? I can ask. They've asked him to stay in the hospital for 3-4 hours afterwards for observation.

I'll go with him. Am trying to avoid google but from a quick peek there don't seem to be side effects from a biopsy - is that right?

DH was told from the outset that they were as sure as they could be that he had pancreatic cancer (that was from his blood tests, his scans and his symptoms. The biopsies he had while they were fitting his stents showed as insufficient samples until he was sent to the regional centre were we were told it was pancreatic cancer but the biopsy after his Whipple's showed cholangiocarcinoma. They discovered a growth in his liver while they were closing him up after the surgery which turned out to be a spread of the cancer. DH gave his team permission to speak to me which meant I could ask questions without him being around, it helped me to process what was going on.

Thanks everyone.,

We've talked before about getting power of attorneys for one another but not done it - I'll sort that asap. Our wills are up to date. The house is in my name. I'm jumping ahead I know.

Hi, I am fairly new here but unfortunately not new to having a DP with cancer. He was diagnosed 3 1/2 years ago (2 weeks before lockdown started) and has been through more chemo than you can keep count of (way beyond 30 rounds), radiotherapy, a crazy amount of ops..... it's just my daily life now.

Last summer he was technically "signed off" from macmillan as they believed the had finally cleared all the cancer and then on his first routine scan, discovered it had returned and within the space of a month became in operable again so another year of chemo and procedures culminating in a massive op last month where they removed 75% of his liver and gall bladder and because of complications during the op, he spent a week in ICU and we nearly lost him.

He's doing much better now, but he has a consultant appointment tomorrow to talk properly about how the op went and his recovery is going.

He is now back in the position where we are expecting that they are going to say he is technically cancer free (again) but I'm not sure it is going to mean anything. We have been here before and was so hopeful only to have it all crumble away. I don't think he can cope with that again, to have so much hope only to be back to square one. I am always the optimistic half but even I feel like I can't be too hopeful or let myself think it could be a possibility, just in case.

@bookwormcrazy that's just awful. Hope is a tricky one, for sure. It serves me better to try to live in the moment and make each day the best I can - not so much giving up hope as setting it aside temporarily while I focus on something more important.

I hope tomorrow's news is good for you.

Thank you. As expected, he has been signed off by the liver surgeon and being transferred back to oncology for surveillance. So now we have to wait until December for his first scan to see if it resurfaces. The surgeon thinks he has a 40 to 50% chance of it coming back.
Until they know it's clear, they won't consider the next surgery of reversing his stoma, which ultimately for my partner is what he is counting down to. I think he would cope much better with all the treatment if he didn't have that, but they won't reverse it until they are confident it's all clear. Back to the waiting game. Hopefully we get a better outcome than last year.

Hello @bookwormcrazy, I'm so sorry to hear about your DP. The waiting must be very difficult for you both especially after having had the all clear.

I'm just starting on this, my DP was diagnosed with pancreatic cancer after an A&E visit a few weeks ago. Am now waiting for him while he has a liver biopsy.

I've been reading and watching from afar. Sending love to all new to this thread. Waiting is painful but when you get your answers I found comfort in telling myself knowledge is power.

Hope everyone gets a slice of good news and a bit of luck in and amongst this mad journey.

Things have taken a turn here and we're now dealing with a "months" diagnosis. That said we've a new consultant on board who is brilliant and once again I feel we're getting support.

Thanks to everyone who held my hand through my rant a couple of months ago. One piece of advice I would give to anyone on this journey is don't be afraid to question, speak up, ask for a second opinion. I felt bad "burdening" the NHS and pushing when I know staff are stretched but if you don't advocate for your loved one then who will.

I don't think any of us needs to feel bad about doing our best for the ones we love, and I don't think you can assume you're being a nuisance. I sometimes felt I was being a right pain, but DH's consultant said 'I wish all my patients had someone like you ' and the nurses said 'all this information is really helpful because you're in a position to see it and we're not.'

Love and courage to all.

We've got our first meeting with the consultant on Wed, three weeks on from a diagnosis for DP of pancreatic and liver cancer (at A&E). Our only contact since then has been appointments for additional scans and a liver biopsy.

I succeeded in not googling until this weekend when I felt I should do some basic research to be prepared.

Everything I read suggests he is at stage 4.

Although it's been hard having this bomb exploding in our lives the reality hasn't hit us yet, especially as DP has not been in any pain. So I'm rather scared of what Wednesday will bring, as some things will then become very clear.

The last three weeks has made me so acutely aware of how much I love him and how much our lives are likely to change. Our son is only 17.

No words really do this justice. My sympathies to all of you going through this horrible experience.

Take a notepad with you and make notes so you can read them afterwards. I had a few questions on the day and dozens overnight. You should be allocated a specialist nurse, I phoned her the next day to ask these. ((Hugs))

I'm in my own hell at the min, my mum is on the 2 week pathway after an A and E visit for kidney stones, she had a Ct scan and they spotted a mass in her pelvis (plus the kidney stones) they've sent her for a CA125 blood test today and they've phoned her this afternoon and she's seeing a doctor tomorrow afternoon.