Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

That's a lovely story Top It was a lovely day out though fair bit of walking as Southend pier is 1.3 miles each way and then it was another mile or so to get to the car but a lovely sunny day, nice highland veg soup and fish and chips for DH. I loved being able to see the steam engine in full and working. All the staff were Scottish and DH always needs me to translate being French. He's with Scottish power and same issue there. 😎

@FairyWren7 I’m so sorry you are feeling low. I hope you’re able to talk to your husband about how you’re feeling.

@Tilllly welcome to the thread. Re PET scans, Im in Australia so our protocols might be slightly different. However as with all scans I try my best to avoid surgical gowns by wearing no metal whatsoever. They will inject you with a contrast and you have to rest for an hour before the scan. You aren’t allowed to read or use your phone as that will cause extra uptake of the contrast in your brain due to the electrical activity (or something like that). However I was allowed to listen to music/podcast so I’d take some headphones just in case. The actual scan took about 30 mins from memory, I think it’s based on your BMI. They did strap me to the table to make sure I was completely still.

@Silkiebunny
I had 5 days radio for BC in 2021
I was told that they'd tested and found 5 days higher strength had same results as 15 days at lower

Interestingly, at my first session, the nurse asked me if I felt safe at home. Something they were asking everyone, to try to combat domestic abuse. Very clever since you'd definitely not be with a partner whilst you were in RT room

@lucysmam
You forgot to have your facepack
I forgot how long mine had been on - it set like cement and I had to go back in the shower to get it off 🤣

Thank you!

That's helpful advice, I have a couple of sports bras so will wear one of those. I hate having to take my cross and chain off so will leave till last minute, it's such a tiny clasp to open and fasten

I'm going to download some podcasts now, I can't imagine just lying there for an hour, I'd be bored out of my mind

I definitely want to avoid a sedative. I've been fine with CT scans but I had an MRI scan last year (I'd had a small TIA) and I found that terrifying. I gather a PET scan is just a bit bigger than a CT scan

Thanks for the encouraging words :)

Sorry to be nosy Nelly and have 3000 questions, but I really want to avoid doing that Google thing

I have noticed pins and needles on and off, particularly on the same side as the tumour. I am assuming that it's a nerve being pushed by the tumour or something?

God forbid, I've got something else wrong with me 🤣

I did mention in passing to one of the doctors and nobody seemed to react, so they're obviously not concerned

I don't know why it's bothering me so much given the cough is the primary symptom, the chest pain, the breathlessness, the tiredness, the fact that I've got a fucking great tumour growing in my lung, yet, I'm sat here, stressing about pins and needles
🤣

@Tilllly the PET machine is like a big donut so you go through it and out the other side.

Actually I’m having an MRI tomorrow! But I’m ok with them. Not so keen on fasting for 6 hrs as it’s an afternoon scan so I’ll be eating and drinking as much as I can before 10.30am lol.

I get pins and needles and numbness same side as breast cancer was and they like you to say but mine only seemed concerned about it in the face and then said it almost certainly wouldn't be anything but did a CT of head. I am awaiting results of that think they are checking for spread to brain or sinuses but it was on Monday and don't get results until 9 November though am assuming was fine. Pins and needles can be anxiety or neuropathy. If it ever goes that's a good sign, mine goes at times apart from face but face improves in steam room. It was brain and spine that were mentioned. But apparently area where it is determines which one of those but forgotten what they said. Though I had it down whole of right side and I think my GP said that meant spine and not brain but oncologist did head CT so 🤔

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, either yourselves or as partners or friends of those who are.

So sorry to hear your sad news about your DP Wobbly and sending love. The thread for partners is this one and might be a better thread for you as we are all patients. https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3

Oh I'm sorry - thank you very much, I'll post there.

@WobblyLondoner "welcome" to our thread. It's a massive source of support.

I had breast cancer last year and this year was diagnosed with an unrelated very rare, very aggressive and incurable stage 4 cancer.

That was a massive shock to our family and I understand exactly where you are right now. I also had 17 year old (now 18) and 14 year old sons. The impact on them is the hardest thing to bear.

I know it's hard not to race ahead but try not to panic, there will be lots of support and please don't Google, at least until after your DH has had his scan and the MDT have met, reviewed his case and come up with a plan and you have all the information.

Its fine Wobbly, I think they run as separate threads so it's easier to discuss problems for partners.

@Silkiebunny

How funny you have to translate Scottish accents for your husband. I also have to translate Northumberland for mine (we started watching Vera and he was lost). Weirdly, he was fine with Northern Irish while we were watching Blue Lights.

@WobblyLondoner

I'm so sorry to hear the news about your DH.

I've found the Upper GI team are on the ball, and especially my gastro consultant is extremely efficient and also kind. I hope you also get a good team.

I think the MDT of oncologists, surgeons, etc and specialist nurse will be the best source of advice and support.

I found that the MacMillan support phone line knew loads about breast cancer, but nothing about the pancreas. However, they do also provide an emotional support line if you feel you'd like to talk about it with a nurse.

These people are great:

https://www.pancreaticcancer.org.uk/

You can email or phone, and they reply quickly and are knowledgable and kind.

10 years ago, 7 Oct 2013, I got my breast cancer diagnosis. As everyone here sadly knows, you feel like you've been hit my a train.

A few days later I came on here and found the tamoxifen thread (as they were known then) and for the next 10 months while I wax going through chemo, surgery and then radiotherapy, they were my lifeline.

A couple of months later, someone came in and celebrated their 19 year cancerversary. I remember how much hope it gave me and so I wanted to do the same in case it might help someone else.

I still recognise so many names from then (I've had to name change a number of times) but so many of us made it through all the crap that cancer brings and are still here.

I'm sending unmumsnetty hugs and strength to you all.

*10 year anniversary

@WobblyLondoner so sorry to hear news re your DH

Thanks@DollyDaisyDo for dropping in- great to hear. @WobblyLondoner sorry about your news.

Thank you for sharing @DollyDaisyDo That is really good to hear.

@dotty2

I was also originally going to get extra booster radios, I think 17-18 total. Not sure why, but it was then just decided to stick to the 15 without the boost. Maybe because I got pCR(?)

I hope you found it doable. It was nothing compared to chemo I thought, but my skin was fine and I know some people have nasty skin reactions to radio.

@WobblyLondoner I'm so sorry to hear your news about your DH, take good care of yourself.

@DollyDaisyDo good to hear about your 10 year anniversary

Went to surgery appointment to be told waiting list has doubled and I won't get op in 2023 and maybe not in 2024 and I am not a priority as I don't have cancer so it's fine for me to be left without a breast. I just burst into tears at that point, asked if implant list was quicker but they said not and said I should get mental health support. My first op was Dec 21. They said it was due to doctors strikes. Think they have these things to try and force you private or get you to accept never having anything done.

Oh @Silkiebunny that is so distressing. Would you be in a position to pay? You need to be able to put this whole business behind you as soon as possible. I hate the idea that the NHS offers a crap service and we have to get counselling to deal with the fallout.

I went to see the private orthopaedic surgeon today and he was kind and agreed to my suggestion of hip surgery in January. It will be complicated but he is an expert on this sort of thing. He was astonished at how cheerful I was despite my ghastly recent medical history. I forget how it comes across when I run through the whole horrid list. Now I have the joys of a bone scan, a routine annual mammogram and a planning CT scan between now and Christmas. Hey ho and on we go.