Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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@CoachBeardsJane

Thank goodness you went! That’s good news that you’ve been treated. So many things can go wrong with these surgeries, but aren’t we lucky to have modern medicine to fall back on.

You are in the best place. I used to hate hospital but I’ve come to accept sometimes you have to relax into it. Hope you heal well.

@CoachBeardsJane Well done for getting it seen to! Something similar happened to a close family member so I know how quickly it can spread.
Travelling back home today and trying to get my head round what the next week will bring.
@TopOfTheCliff absolutely go with the tattoo! Carpe diem etc

@CoachBeardsJane so glad you got it seen to! Hope it’s not too loud on the ward.

@TopOfTheCliff a tattoo sounds like a great idea, I wonder whether I might get something as well. I think I might go with another piercing, I have two tattoos from when I was 19 and fearless and now I am 32 and absolutely full of fear haha.

Happy Sunday all. I think I might be in the post surgery blues era that we chatted about. Either they or maybe I need to consider emotional support after such major surgery.

@Brunonononooo I’m the same. Very up and down here. Have sent husband to his friends birthday thing in the city without me. I’m really tired, still on antibiotics and just want to stay at home in the warm.

My latest question is about radiotherapy. I’ve been told I am having 5 weeks of 5 days. But husband wants to book a two week trip away which looks as if it might be in the middle of it. I’m assuming it needs to be consecutive to have the right effect. Should it also be within a certain timeframe after surgery? A few other considerations as well re the saline going into the expanders changing my shape etc. Any advice from those that have had radiotherapy?

@Lisdeflores @Fantasea Thank you for saying how you cope with the monthly Ca125 checks. Never thought about not asking for the results! I suspect I won’t be able to help myself.
How does it work with going on holiday? Do you have to wait till you get that months result? I suspect that’s the bit that’s going to be a pain - not being able to plan anything.
I am glad you had the holiday with your son @Lisdeflores - he will remember these things. I don’t have many memories from childhood- but I do remember camping and cooking sausages on an open fire.

@CoachBeardsJane I am so glad you went! Necrotising Fasciitis! Did you feel your life had become too straightforward? I really hope you make a full recovery

@TopOfTheCliff Thank you for sharing about your daughter. This is what you get from this thread - a feeling of not being alone. My own daughter has made progress, but can slip back when she runs out of her meds. But hopefully there is slow progress in the right direction

@CoachBeardsJane so pleased to see you were seen. Fingers crossed you're much more comfortable soon 🤞

@Brunonononooo hopefully the blues will lift soon!

I've been pondering whether it's worth asking about surgery - there are 2, er- her+, tumours. One in each breast. My oncologist mentioned there's possibly some bone activity, hence the Prolia, but not definitely, and no there are noother mets. I'm wondering if it'd be worth taking both breasts, which gives the main tumour less chance to grow and neither the opportunity to put feelers out for a new spot. Or am I being too simplistic? I fear I am & I've probably missed some vital piece of info being told to me 🤔 I might just ask the question anyway.

We're off to Pride for a few hours today, via Home Bargains for snacks/drinks. Most likely we'll eat a late-lunch from one of the food vans that will be there, then I don't need to think about food later on.

I just made a blood test appt before leaving and I have one booked for when I return. I have run out of medication while here but my oncologist was aware that would be the case and said it wasn't 'the worse thing that could happen'. My tablets have been delivered to my home and are waiting for my return..
Dr W always says to me ' go live your life' so I'm taking him at his word. I wouldn't be so cavalier with active treatment!

Pic of my post treatment tattoo. It's a dodgy pic but it says victorious. When I had my recurrence my DH said I should get oh shit! on the other leg 😂
Love to everyone having tough times on the thread

@FairyWren7 just jumping on re the radiotherapy. I would imagine a two week trip would be a no-no as it has a cumulative effect. even when I had my blood clot I was taxi'd and wheel chaired in,.although I do know people through chatting in the waiting room who have missed a day through illness. I had five weeks of five days (pelvic) and it was a slog but that was mostly the travel and the bladder holding.

@Lisdeflores I am thinking about early next year onwards. I will be good just now!!

But since this thing will almost certainly come back I would definitely like to see a bit more of the world before I’m back to chemo appointments.

You are definitely right to do that. x

Post surgery blues is a thing? I had put it down to the instant menopause.

Never thought about not asking for the results!

I never ask for my blood results and neither do I check my page on the patient portal. I just wait for them to call me with the results and even when they do I never ask if they’ve gone up or down since the last test. If they say they’re normal it’s enough for me.

It's a thing. I found I had a very weepy day or two (not like me) about 3-4 days after surgery. Felt awful till a friend happened to check in and ask me if I'd had the crying day yet. It was reassuring to know that it was to be expected.

The GA fucks up your brain (I mean that's its function I guess). Plus the actual real life impact of having had surgery and needing to recover is itself depressing.

A bit like the baby blues I think- a small/medium amount of depression is normal, but more and it's worth seeking help?

@RedRosesPinkLilies my DDs last relapse was with my second cancer diagnosis. She was upset but unknown to everybody her pharmacy was giving her low strength lithium so she wasn’t protected and got very ill very quickly. Her psychiatrist was furious with them but we were all shocked at how the stressful news caused a relapse. Despite being the bravest most adventurous soul she doesn’t handle emotional distress easily. It’s hard to know how to protect her without keeping news from her. Needless to say I felt very guilty at causing her to get ill. I hope your DD stays well. Xx

Ah Top, that's not your fault. There's nothing you could have done to prevent this.

Good (I guess) to know about the post surgery blues. Any other general tips for a stay in hospital? I hated my one night so much after DC1 that I had a home birth with DC2 😅

@Crimsonbow The best things I took in with me were;

A long phone charger cable (2m I think).
A peg to clip it to the sheet/pillowcase so I didn't keep losing it.
A metal straw - makes it easier to drink when you're not very mobile and half laying down and their paper ones were rubbish.
A rechargable handheld fan (will link to the one I have if anyone wants to know)
Little packs of tissues. I used loads of these for one thing or another.
Lip balm. I was so dry!
Boiled sweets for the same reason.
Lavender oil. Hospitals smell funny, they just do.
Earplugs and an eyemask. Good ones that actually do the job.

@TopOfTheCliff that is difficult with your daughter, but definitely not your fault.

It’s hard to understand how different and sensitive the brain of someone with psychiatric illness is.

I’m glad she at least had a good psychiatrist- not always easy to find.

Things already on my list for the next surgeries:
-bonjela, I had bumps and irritated places in my mouth after the tube
-notepad and pen so when they say "keep this dressing dry for X days" I actually know what the X number is
-wet wipes for face and bum! (Sorry TMI 🤣)

@RedRosesPinkLilies thanks for the kind words. I think one of the hardest things about a cancer diagnosis is deciding how to share the news and who to tell what. I appreciate with young children an edited version is needed and there is help from Macmillan and others with this. With older family it’s hard to judge how they will react and horrible to see them hurting. I wanted to minimise it and say “ Don’t worry I’ll be fine, it’s only a small tumour and they caught it early etc etc” But the truth is you don’t know what is going to happen and you can’t protect them from everything.

@TopOfTheCliff ,I hear you. Sadly I had to give my 2 DDs news of my diagnosis 2 months after their dad had died from cancer. I tried so hard to be upbeat, but you cannot say to people who have just lost one parent that it will all be fine. It’s an added pressure, this having to tell people.
There’s nothing kind about this journey.

@Podgedodge @TopOfTheCliff I hear you about telling family members and worrying about how they will take it. I have two teenage daughters and most of my dark moments are about how this will all affect them and how honest to be with them about my state of mind. My 16 year old has a radar for my emotions and immediately asks me what is going on. Very hard to respond.

My 20 year old DD doesn’t seem that bothered by it all, but I think that’s probably a defence mechanism in a “mum’s invincible” sort of way, I did carry on pretty much as normal too that fed into it and I have hidden a lot of my angst. It’s just me and her so it would hit her hard if anything worse did happen. Before I had the second opinion, which showed more cancer than was originally found I was planning on turning down chemotherapy against my hospital’s advice on the basis of having read the research myself, I spoke to her about it because I didn’t want her to feel bad about the decision that I made, but she just said breezily, “I know you’ll make the right decision so that’s fine for me”. She’s a student nurse so she does have medical knowledge, maybe that helps her.

Trying to work out if my Exudrain drain is working properly as the long tube seems full up and I'm wondering if it could be blocked. I tried to empty it, thought I had but then looked and the bulb was about a 1/4 full. I've got the instruction booklet but can't make head or tail of it. My MacMillan nurse won't be around as the clinic is closed at weekends. I've tried ringing 111 but the said they are busy and it may 24 hours for someone to get back to me. Are there any phone numbers people know of where I can speak to someone at 3 o'clock in the morning on a Saturday?

Hi @1Strawberrycat. Hope you’re ok.
The MacMillan helpline opens at 8am today, it might be better to go to the hospital. Do you want to post a picture of the instructions, can have a look for you.

@TopOfTheCliff I have found that people react in line with their underlying personality. So some have remained true friends and steadfast/ calm - this includes my 84 year old aunty, and some have run in the opposite direction
Its true I haven’t spelled out my prognosis - but with most people just hearing the word cancer (and even qualifying it with the word serious - ie not curable (for me) seems to have been enough to get the message across. And they can interpret for themselves.
Older people have such a wealth of life experience- they can be surprisingly comforting. But I also know it’s not easy.

My children (4 of them), all know and have all reacted differently. The hardest is definitely my youngest (18) - his life so far has been so difficult with what our family have been through- and now he has a mum with incurable cancer. It’s just not fair.

But it’s not fair for anyone.