Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

Cross-posted @InOtterNews, well that’s a pain in the fucking arse really isn’t it?

And you’re having to stay in the whole time?

Balls indeed!

@InOtterNews how utterly crap. Much sympathy to you.

@LucyWarlowsRightHand yeah I've been stuck in since March barring hospital visits. Post transplant I have to stay in for 3 months too - until I get my vaccinations. At this rate I might be able to go out for a drink at Christmas (I've got my priorities right)

@InOtterNews

(just planning early for Xmas)

@InOtterNews bollocks, indeed! How did today go? It’s quite tough when you mentally start preparing for one thing, and then they completely change it, isn’t it?

@Bloodybridget thinking of you today and sending hugs.

I ventured out this morning, for the first time since the fiasco bike ride last Friday. I felt very emotional and a bit frightened (low immunity and all that). And this humidity is not helping. I look visibly ill, too, fuck! All yellow/brown without a spark. First signs of mouth ulcers have appeared, too, yay!

@ElaineMarieBenes how did the port business go today? Oh, god, port, I keep thinking of the wrong type of port. Mind gone berserk after just one cycle already!

Huge thunderstorm last night here, with torrential rain. DS was petrified, so had to sleep next to him to calm him down. First day of school today after 5 months, woo-hoo!

First day of school today after 5 months, woo-hoo!

Ours is Tuesday (though we did have a few weeks of school at the end of June). I wouldn’t say I’m counting down the days, but....

More than anything it will be great for the DCs; as we all know it’s been tough on the kids having to miss out on the structure and social contact. I could use two seconds to hear myself think, too.

@Bloodybridget thinking of you today. There’s not much else I can say but you’re in my thoughts.

I certainly hope your DH is allowed in with you. I’m in the Netherlands so things are different here, but despite the strict rules they were very clear that I was allowed to take one other person in with me to hear results. Mental health is important too and many people need that emotional support. (I’m weird, I prefer ExH to wait outside so I can focus on myself and not worry about his reaction.) Anyway I’ve got my fingers crossed for you on all counts.

Hi all hope everyone is managing in this heat. Today is my 'mum day off ' I get to enjoy a guilt free day doing nothing as my DS is at holiday camp until 3pm, fingers crossed the schools reopen on Sept.
I did speak to my CNS about my staging and she explained that stage 4 disease refers to disease that can be seen outside the pelvis(o v cancer), the cancer can be seen in lymph nodes but no other organs. They will get a clearer picture after surgery but at this stage they tend to grade up like rounding up a number. So not all positive but some hope. The CNS apologised that this had not been discussed with me before I saw it written down.I don't blame the G P for putting it on the forms I think it was a fair assumption of hers that this would of been discussed with me (I do blame her for losing the prepaid envelope for returning the forms which has been a right PITA grrrr!).
I had my 2nd chemo last week my creatinine levels were to high so they had to go ahead at a lower dose. I found it tougher and longer to get over the side effects this time, but I'm starting to feel human again.

Thanks for v kind messages. Just to clarify, my DP is a woman, the most amazing woman in the world imho!

@Bloodybridget

Thanks for v kind messages. Just to clarify, my DP is a woman, the most amazing woman in the world imho!

Sorry @Bloodybridget! Honestly it doesn’t seem to matter how unbiased we think we are (I live in Amsterdam FFS!), that heterocentricity will get you every time! My apologies

@LucyWarlowsRightHand

Re covid and colonoscopy delays. So it's not just the NHS? My brilliant colo-rectal surgeon has been twiddling his thumbs throughout lockdown. According to my Macmillan nurse - named William, since heterocentricity has become a topic! - told me he's been ' busy doing admin', which I think is code for having rows with administrators. He's. v alpha. One of the reasons I like him is that he stands up for his patients. He specialises in keyhole/robotic surgery, but I couldn't have it because of the possibility of adhesions from previous abdominal surgery. It'll be a much shorter stay in hospital and quicker recovery for you. So don't pay any attention to my whinges about being chained to the wall in a ward full of addicts and conspiracy theorists.

I think in my hospital, they converted the surgical wards to covid intensive care to help with the overflow from King's. At the beginning, there was talk of using private hospitals for cancer diagnosis and surgery. We're surrounded by them for hip ops and varicose veins. I'm sure they could have coped with a colonoscopy but I never heard of any being used.

Yes - you were lucky, but it sounds as if you've got the sort of tumour which spreads along the lining, rather than focusing its efforts on bursting through the layers. Mine was concentrated on one polyp in one
spot and hell-bent on tunnelling out, like the Great Escape.

@balkanscot port business over - very much enjoyed the sedation drugs. Unfortunately they’ve worn off and left with a slight pain in the neck (DH believes this is back to usual!).

@Bloodybridget thinking of you too today

@Lizdeflores hope you and everyone else had a chilled day

Hi all, thank you again for all the great advice you gave me up thread. @LucyWarlowsRightHand and @TopOfTheCliff your experiences really resonate with me and I'm determined that "knowledge is power" should be my mantra for the coming days/weeks.

My PET scan was going to be next week but they had a cancellation so I can have it tomorrow instead and today I've had a breast MRI and another ultrasound to get markers fitted (I think this is called "clip and coil"?). They picked up another area with lots of activity on the MRI which is probably nothing but they took more biopsies and added another marker for good measure. I think I'm going to be a bit bruised and sore when the anaesthetic wears off! I'm still terrified but maybe also in denial because I'm mostly eating and sleeping ok. At the moment I have an appointment for results on 25th Aug but now that the PET scan has been brought forward I'm hoping it could be sooner even though I'm dreading it. But knowledge is power, right?! I've got an annoying mild cough which started when I went for a run on Sunday and odd pains all over the place but the lovely breast nurses have been really helpful and I know these things are probably nothing to worry about.
I've sorted a dentist appointment, hygienist, hair cut and between that and work and children hopefully I can keep myself distracted enough to stay sane.

Thank you again, very pleased I found this thread. Really hope all goes well today @Bloodybridget and that things are ok for everyone else.

GOOD NEWS! I am really sorry for sounding the alarm, it turns out they get everyone in for scan results, and my abdominal area is all clear! There is a little spot on my lung that needs to be followed up, might be nothing, am barely worried about it.
@LucyWarlowsRightHand no need to apologise at all
I might have a bit of a break from the thread for a few days, we are going away on Friday till next Wednesday, but I do send much love and good wishes and thanks to everyone.

That is so great to hear @Bloodybridget! Hope you have a fantastic break too!

Thrilled for you @Bloodybridget and have a fabulous break

@Bloodybridget

Great news! I was going to write something Pollyanna-ish when a consultation in the flesh instead of a phone-call rang alarm bells in your head - and now I wish I had, because I'd have been right!

Enjoy your break! You and DP deserve it.

That’s great news @BloodyBridget have a lovely weekend away with your amazing DP. You deserve a break from all the worrying.

@Lubballoo it’s great things are moving on so fast. You are being very productive getting all the jobs out the way.
Best not to mention the cough if it’s just a running thing or they might delay you “because Covid!“

I never seem to lose my appetite even during chemo nausea. It makes my DH worry less when I clear my plate before him. And the sleep thing is the same. I sleep seven hours while he lies worrying and listening to my breathing 🙄 He is lovely but he is having all my symptoms like in pregnancy 😂

Best wishes to everyone else especially @InOtterNews

TopO

Just had my pre-op assessment and they were in a huge rush, barely explained anything. I tried to ask question, but OMG, the rush! Yes, there were other people waiting to be seen, but I've never had surgery, let alone cancer surgery, so at least let me ask some bloody questions!

So, a couple of basic questions, maybe you know the answers? Otherwise I'll be calling the breast cancer nurses tomorrow to find out more...

What kind of bra does one wear after a lumpectomy (and sentinel lymph node removal)?

Am I likely to go home with drains after a lumpectomy? I'm finding conflicting info about that...

Lost of love to everyone - @Bloodybridget I am so happy for you!

@TopOfTheCliff your DH sounds lovely and the similarity with mirrored pregnancy symptoms made me smile!

How are you getting on with cycling to chemo? The hospital I'm going to is a 25 min bike ride away and cycling is by far the best way to get there assuming trains are a no go for covid reasons- obviously i'll have to see how I react but it'd be great if it's doable!!

Happy to hear of all good news.

Unfortunately, I've just had a call from my GP saying that my liver results are worrying and she's requesting an urgent ultrasound. I can't help thinking I'm fucked now, and I'm looking at my little bit of hand-sewing and thinking that it will never be a quilt .

Kicks up the bum welcome.

No kicks from me, @BitOfFun, just much sympathy and a huge virtual hug.

Oh @BitOfFun sorry to hear that i hope you can get the scan very quickly. Given the help I've needed this week I'm not sure i'm best placed to offer advice but no kicks from me only sympathy. And I've been having similar sad thoughts in my darker moments this week about multiple sewing and knitting projects I have started or planned. It really really sucks xx

Fantastic news @Bloodybridget - I hope you enjoy the upcoming few days and can finally relax a little.

I've had a full-on day - but not terrible. One of my best friends came with me and spent the day with me - so if nothing else we had some quality time.

I need to have a wisdom tooth removed before transplant. Apparently it's at risk of harbouring an infection.

I've got 2 more days of stem cell harvest. For those of you have had the joy of GSCF injections - I'm now on triple dose to boost stem cell production. The pain will be cracking!

Kidneys and heart ok as far as I know.

The bloody fantastic news is no chemo needed to keep me ticking over in the meantime AND I'm allowed out of the house. I need to keep track of my bloods, but I can go out for walks as long as I avoid people. I can also if I"m feeling ok, go to Dorset with some friends for a weekend. So I'm excited that I can hopefully build up some stamina and strength before transplant (since I hit my 3rd chemo what with one thing or another I've been fatigued, and haven't even really managed jobs around the house)

I'm expecting to be admitted now for transplant on 14 September. Fingers crossed no more problems. I'm much better mentally this week following a weekend of sobbing resting

I hope everyone is OK and managing to stay cool (for those of you with a heatwave) - I'm lying in front of the fan cursing the blue sky and weather forecasters who promised rain.

@BitOfFun stay in the present! There are lots of innocent reasons for abnormal liver tests which might explain it. It is hard to keep having to pick yourself up and carry on.

@Lubballoo I ride in 30 minutes but DH picks me up afterwards in the van. It’s cheating but it makes me happy. Maybe you could get a taxi to take you and the bike home?