Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next 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, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

Winditup it is. I came off fb for a bit, as I was finding it a bit stressful so can't check but I'm fairly sure that's it. White and blue logo?

I know they got a sample on my last biopsy. Which is great. They didn't on the first and turned out to be a completely different type of cancer to the one they were talking about. I've been slogging through this since August and I'm no further forward. Next week I'll know about my diagnosis and until then I can live in my happy bubble, where it's all a mistake.

Hi all, had MRI today and it was adrenal glands they were looking at. Emotions are all over the place, guess it's just waiting for results now.

Got letter through for US on abdomen, pelvis and transvaginal for 3 weeks on Monday. Private scan was going to be 2 weeks so will just wait for NHS one as can’t afford the £500 really. Am worrying now as it’s come through so quickly that GP has put it through on 2 week pathway as she said there was no need at appointment. Bloods are on Monday and results phone call Friday right before work. Just want answers. Lots of people telling me it sounds like endometriosis as I am very low risk for OC due to multiple pregnancies, lifelong hormone contraceptive user, my weight and age but there are always cases that doctors can’t explain. Am so scared.

@seizethecuttlefish. Thinking of you, this is the worst waiting to find out. At least once you know they can give you the plan of what happens next and go from there. Sending positive thoughts and good luck to you and everyone on the thread

@FizzyOrange I am on tenterhooks waiting for your final diagnosis! I have realised I need to really keep on top of which tests need ordering as we had a bit of a mix up with that this week and I was getting in a panic thinking they wouldn't be done in time. It certainly is an awkward fine line between chasing and nagging.

I do think the anxiety is a major project in all this. I find every few days I work myself up into a frenzy of misery and anxiety and then I snap out of it. But it's a work in progress controlling these cycles. I've snapped out of it for now. I was very anxious about the port then chemo next week then I was talking to a dr friend who has child patients and now I keep thinking to myself: children do this - little children. So surely I can be as brave as a small child.

I know a lot of our anxiety is around our families - our kids in particular. Not sure this is the best format to get into that - but I am finding ways to deal with that, hoping for the best, planning for the worst.

@TopOfTheCliff I switch between radio 2 and 4 throughout the day. Hopefully that ankle will heal up now.

@Winditup Crazy I can see that must have been a really scary experience but good about the drug trial.

@Acinonyx2 I am exactly the same with the anxiety and misery! Every few days I seem to have a whole day when I am crying all day and then I will be relatively ok for a bit. Have you had the port fitted and how is it?

@FizzyOrange port Tue chemo Wed. I'm sure it will improve things later. I'm sure dh must wonder which phase he's going to encounter that day!

Sending lots of sympathy and good thoughts to everyone currently in limbo waiting for results and diagnoses. It completely sucks.

I had my "chemo call" and went for a pre-chemo mtg with nurse on Friday. Had a tour of the chemo suite and got bloods, Covid test, ECG, PICC line insertion booked in for next week, then start chemo on Friday. It means I'll be doing my second chemo on Christmas Eve but with any luck I'll be sort of ok for DS's birthday on 12th. I had a bit of a meltdown after the appointment - everything just suddenly hit me and I felt so overwhelmed and just had a massive cry. But rallying again a bit now. DH has just given me this t-shirt, which sort of sums up my feelings at the moment. (Apologies to anyone who is offended by swearing.)

Hello to everyone. Sorry to read things are shit at the minute for a lot of us.

Love the T-shirt @AlbertCampion.

I've just got oncology appt for 8th so will get all info then re chemo regime and start date. It's been a bloody long road to get here since colonoscopy in May!

Recovering well but slowly from op. I'm struggling with being so slow as I'm always running around. Needs must though.

Sending love to everyone and hope your weekend is as good as it can be. ❤️

Thanks @Winditup. I'm just trying one day at a time and waiting for the antidepressants to kick in. Of all the possible side effects I could have, they're gifting me insomnia 

@Iamsodonewith2020 I went through a year of tests for OC. High CA125, terrible periods, the works. I was all clear. I hope you find the same. I do have the most photographed abdomen in the world...or at least locally. It's not the highlight of the past year but hopefully you get the answers you need.

@AlbertCampion love it.

My anxiety is all over the place and I now have a chest infection which I have decided is a serious symptom. Even though every member of my household now has a cold and I'm clearly patient zero! I used to be logical, you know.

Hugs and positive thoughts to everyone that needs it today.

@AlbertCampion love the T shirt!

@gillmoregirl pleased you're progressing well even if it's slow. You have had a long road since May, that's six months!

@seizethecuttlefish sorry you are so anxious, it is horrible feeling like that. I have the same problem with every symptom since this started. I have never been one to go to the doctors very often - but lately I am always at some medical appointment or other and I think it all has made me even more paranoid. Hope your chest improves soon, do you have antibiotics?

@Iamsodonewith2020

Don't worry it's ok I got to the abdo ultrasound / transvaginal the same week (all was ok) I was sent it doesn't mean they sent you fast it just depends when appointments are available at your local hospital ect.

I had my appointments around June so in the lull of covid, maybe that's why mine were fast.

I'm sat waiting for my endoscopy I'm last on the list and having this done awake I also think endometriosis possibly is what Iv got but obviously they are staying with my stomach and working down - makes sense I guess.

Evening all,

@FizzyOrange Hope your second opinion is completed quickly. The waiting is the absolute pits.

@Winditup That does sound like it would leave you in a whirl. Hopefully now you are home, you can begin to process it all.

@Acinonyx2 Good luck for next week, I'll be thinking of you.

@seizethecuttlefish I hope you find out soon.

@AlbertCampion Good news about having a firm plan with dates, it sounds like you're about two weeks ahead of me. I love the T shirt too and will have to look for one.

@gillmoregirl Slowly is still moving forwards.

@Iamsodonewith2020 Good luck with the endoscopy, I really struggled when I had one much more than the colonoscopy.

I had a PET scan on Wednesday and also had a video call with my chosen Oncologist. She had a vague plan but wants to see the PET and MRI results first. Thankfully she can access them directly from NUH and I'll be discussed at their MDT on Monday and then I am seeing her in person on Wednesday evening.

Everything is being held up by me having two cancers and ulcerative colitis, so she wants to check with my gastroenterologist as well before starting chemo.

I just want something to start and then I will feel like I'm moving forwards but at the moment I am in limbo. I did manage to get a dentist appointment though since I broke my tooth in June and my dentist is going to do a filling during her lunch break on Wednesday to get me in so I can be ready to start chemo when they call.

I also need to speak to my insurer on Monday and increase my pre authorisation as well as find out how the chemo at home would work and whether I can mix and match with attending the centre.

Oh and as a laugh, my eldest daughter today told me that I can't die because they would all starve to death and there wouldn't be any good snacks because dad is rubbish.

Ok then!

@MrsPnut

Thanks endoscopy all done with no sedation I'm actually traumatised was absolutely vile. He took 4 biopsy while he was in there adding to my trauma. I'm in bed don't want to move. Tomorrow is another day and my ct colonoscopy is in 2 weeks so at least I'm finally getting somewhere now.

It’s such a difficult procedure, and doing it without sedation is doubly hard.

@MrsPnut I was worried about my UC and my oncologist avoided one of the chemo options for exactly that reason, as he says it would "strip your gut" which sounded pretty horrendous. When I found out I would need chemo I called my gastro team and they basically shrugged and said I would just have to see how it goes, which wasn't very reassuring. If you get any further information from your team I'd love to hear about it as it does worry me a bit.

@AlbertCampion
I have Crohns and during my first oncology appt I asked who I should refer to if I had a flare and was told to contact oncology rather than gastro. I think that although oncology have communicated with the gastro team , oncology get the final say on perscribing. My gastroenterologist did tell me that Crohns does tend to behave it self during chemo because the chemo is depressing the immune system and that has been my experience so far.

Struggling again today.
Spent most of the morning cleaning.
Putting up Xmas decorations later but my heart isn't in it.
I'm sleeping better but am so so anxious about the appt (whenever that may be).
I'm not googling but the couple of people I've reached out to are silent.
I keep looking at my kids and just want to sob.

@Shrillharridan hugs. Not that that can do much. Not googling is good though. Google is a shit! Glad you are sleeping better too.
Can you speak to McMillan or another helpline. Maybe speaking to a stranger and letting it all out, might help?
I met an incredible woman when I was in getting my biopsy. She was in her 80s, had had 3 different cancer operations and was just completely full of life. I was really upset and she said, there are people who have lived for decades with a cancer diagnosis. You probably walk by them in the street and you'd never know. I'm definitely not as upbeat as I used to be but I'm hoping to get back there.

@Shrillharridan love, hugs and buns to you. It’s so hard waiting and I second speaking to the Macmillan helpline for some support.

Shrillharridan are you waiting on a scan or appointment with consultant? My GP referred me to a different hospital for scan first as wait times were lower and staff isolating lower so I could be seen before Christmas apparently due to my levels of anxiety. Could this be an option?

I'm being referred to ocular oncology.
Except the referral took a week.
So now its a waiting game - as it has been since January :(
I've had lots of tests which revealed what the issue isn't but still no further on.
I should have had another scan beginning of September which didn't happen due to covid.
I can't help thinking I should have been referred back in June when the dr just shrugged when I asked him why I couldn't see properly.
I've had multiple oct scans, IG and FA angiography, USS and contrast head and optic nerve MRI.
Dr last week took one look and referred me.
So...
I'm pretty much freaking out.
I've been seen by 3 different ophthalmologists up to last week.
I'm tired and scared and I'm sorry to whinge bit no support irl.
Dh in total denial it could be bad news. Just won't discuss it.
Can't tell my mum. She's frail.
I've reached out to 2 friends who have both had cancer and...nothing.
Macmillan might be a good shout but feel like a bit of a fraud as I don't have a dx yet.
Got to phone Dr again on Tuesday for more diazepam which I'm dreading tbh. He was SO horrible.
I'm really tired.

Thank you all for your kindness.

@Shrillharridan you poor thing, that is really hard, particularly coping by yourself. You can speak to Macmillan without a diagnosis and they will welcome you in your position. I still don't have a formal diagnosis but have a weekly call from a nurse there and it does help. I am sorry to hear that your GP was unsympathetic, that is awful. Is it a telephone appointment you will need? Could you ask for a call back from one of the doctors you would prefer and if the receptionist needs to know the reason for the appointment (mine does) then just say it is to discuss your anxiety medication.