Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Zorgo I do now what you mean about dreading the port fitting but when mine was done it wasn't a problem in the end. They do give a local but I was also offered some sedation and took that too.

Once the port is in does make it much easier than having to have the infusion into the veins on your arm. They did try to put the sedation into a vein and blew the vein! It is worth it though and it doesn't take long to do.

My only advice would be that of they offer sedation take it if you can. You still know what is going on but somehow just don't care so much.

I know there is no point in telling you not to worry about it, If only it was that easy just to turn it off.

@meercat23 thank you for your wise words.

This afternoon she got seen by a oncology gynaecologist because she was ‘leaking’ fluid. She ended up having a womb biopsy as there is a massive build up of fluid there! They are worried it has spread further and have requested a MRI scan. Annoyingly they’ve sent her home and told her she must eat!!!! DH found out she hasn’t even been taking the high calorie capsules the dieticians gave her because she “can’t face it” He is a bit frustrated with her to say the least.

This is a really weird question - can you go feet first into a MRI scanner?? That’s what the consultant suggested today and it just sounds odd!!

Hey mumtomaxwell, yes you can indeed go feet first into the MRI scanner. It depends a bit on the area to be scanned but I can't see why it wouldn't be possible to do a FFS (feet first supine) for that particular area. Don't be afraid to check with the Doctor in advance, or the radiographer on the day.

Just checking in to say hi to everyone; I had three breast biopsies a few weeks ago and thankfully they have come back clear, but I'm still experiencing pain so at a bit of a loss what to do next. Thank you everyone for all your thoughts, support, and handholding. You are a fantastic bunch 😊

i had my surgery today, don’t really have any new information but it went to plan, and i’ll find out in three weeks if i need radiotherapy. i’m drugged up to the eyeballs now, fentanyl, tramadol, codeine, paracetamol and ibuprofen, so i don’t care about how much it hurts. they’ve taken out a sizeable chunk. hope everyone else is coping ok today, love to all

Morning all!
Daisy hope you are comfortable and have tolerable fellow patients on your ward (are you still in special care unit?). Any idea how long you might be in hospital?
Defaultuser I'm sorry you're having to cope with more side effects from chemo, and caring for your DC at the same time must be really hard. Do take full advantage of as much help as you can, people are usually only too pleased to be able to do something useful.
Zorgoth good luck for tomorrow, hope the port fitting goes very smoothly.
BreastofIntentions glad to hear the biopsies came back clear, do you know how you can get further investigations for the pain? Would it be via your GP?
mumtomaxwell your poor MIL, horrible for her and so worrying for you all. There are lots of threads in the Life-limiting illness topic about supporting loved ones with various cancers, you might want to start a thread there.
I had the scan yesterday, my cold's much better - also had pneumonia vaccine! I have a sore place in my mouth which is freaking me out a bit, on the inside of my gum at the back, it feels like a scratch or cut, been there about three days and isn't healing. Will get DP to peer in with a torch later

@Bloodybridget i came home last night! probably a good idea to travel while i was still massively drugged up as it was quite a journey (chelsea to west sussex in two stages). i actually slept really well and i’m going to reduce the opioid drugs today (i’m a recovering addict and wary of enjoying them too much)

Daisy Glad the surgery went well and I hope you are comfortable today. Don't underestimate how much a general anaesthetic knocks the stuffing out of you.
zorgo I don't have a port as my little hospital doesn't do them but I hear they are the best of the options. I have a PICC line in my arm. It was a bit uncomfortable at first but I have got used to it now. I don't like it as it's always there and gets in the way but it does make chem easier.
Bridget Back to waiting for scan results, do you have an appointment for them? I presume you've tried all the usual remedies for the sore gum? My dentist always promotes the extra strong sensodene, I think it's rapid relief, it's about £5 a tube. Rub it on and don't rinse. It does help and I've been using it throughout chemo.

meercat Sorry to hear about your anxiety. It's impossible not to take on worry for our DC even when they are adults. I may have missed it but do you have an appointment to discuss the herceptin or are you waiting for a scan result?

I had 8/12 yesterday. Steroid red face today and bowels now on strike again. I was feeling dreadful when I went for chemo yesterday and almost cried when the nurse did the usual "any problems to report?". I was till mopping up a nosebleed at the time. Anyway I have come home with supplies of loperamide and will use them at first sign of dire rear. I managed to discuss the diarrhoea but couldn't bring myself to mention the wind as there is zero privacy, not that there is anything they can do I guess. I have a gyna appt in two weks about the dodgy scan result. I delayed it a bit because my original one was booked on a day when I need to be next to the bathroom .

Hi again all,
Sorry, haven't read through all the posts but thought I'd post as really shit after results appt :(
So they took a sample of the "lump" in the airway and two consultants are convinced it's cancerous (but mild) but apparently the result came back negative. So now I have to travel 3 hours for an overnight stay to have a rigid scope down there under GA.
They also said that depending on findings they might want to remove TWO bloody lobes of my right lung. I'm really not happy about this at all and feel so shit. They keep saying I'll be "fine" with that amount of lung removed but I don't what that means. I feel "fine" just now!
They're talking about carrying out the op "in the new year" so quite soon - this will be a week's-ish stay in the same hospital 3 hrs away.
My little dude isn't even 4 months yet, my big dude has just turned 19 months and I just can't fathom being away from them for so long. Because of the distance and their ages it might well be that I'll need to go on my own as well, as no way would they cope in hospital accommodation for a week.
Sorry for the rant, I know others are feeling worse and are less wimpy than me but I just need to tell somebody. I haven't told family at all (just husband and one friend) and don't really want to so feeling a bit alone.

Oh I forgot to put the consultants are still convinced it's cancerous and that's why they want the second test

Oh brownies that's shit. I've got older kids, but can imagine how awful it seems to be away from them on top of everything else.

Brownies that really is crap, I am very sorry. I think you can probably trust the consultants that you will be fine after having the bits of lung removed, but of course it will be very hard for you to be away from your LOs.
You and your DP will have to decide how to manage things while you're in hospital; you might decide it's best for the DCs if you're just not there for a week and they stay home with daddy - and is there anyone who could come and stay at yours to help out, and allow DP to visit you? If you wanted to see your DCs while you're in hospital, could the return journey feasibly be done in a day, or would they need to stay somewhere?
I have a friend who had cancer treatment over three years, her younger DC was six months old when it started. Friend had numerous hospital stays and I don't think the baby ever saw her there.
Never apologise for ranting here! Everyone on the thread deserves support and handholds, and none of us is a wimp.

Oh and skap sorry you were feeling so awful yesterday. And that sodding bowels are misbehaving again. Chemo really is horrible.
I will see the oncologist for scan results next Wednesday, I'm quite sure everything will be fine - the chemo was just to deal with any stray cancerous cells, but surgery apparently achieved clear margins.

Ohhhhhhhhhhhhhhh look ---------->>>>

That is my hair.

Disappearing at a rate of knots.

@Bloodybridget and @TenaKween thanks for letting me know it actually is shit and I'm not just being daft! Genuinely makes me feel better to read your replies :)
@NaomiFromMilkShake that's shit!!

Well.....here's a thread I didn't expect to find myself on.

I was diagnosed at the end of October with an endometrial tumour, following some post-menopausal bleeding. Initial thoughts were that it was a grade 1 stage 1A tumour, and a hysterectomy would be a total cure. No need for further treatment, farewell cancer, nice knowing you.....

Two weeks post-hysterectomy, and the histology results are saying that it's at stage 1B, so further advanced into the uterus wall than initially thought, AND with "evidence of lymphovascular invasion". Oh shit. Dr Google says this is not a good thing. I've now been referred to an oncologist, who I'm seeing on Monday, and will most likely be having a course of radiotherapy. NOW I feel like a cancer patient.

I haven't told many people the reason for the hysterectomy, notably my children (20, 18 and 16) are still in the dark. Partly because each of them have a lot going on in their lives at the moment (off to uni, job changes etc) and partly because I thought the hysterectomy would be the end of it, so I could parcel up the bad news in plenty of good news (a.k.a. a "shit sandwich"). Ugh. Will wait until after Monday before deciding what to do.

I have loads more thoughts swilling about right now, but thought you seemed like an amazingly supportive bunch, so I'd love to join this thread. Hello @catnidge from the hysterectomy thread!

One last thing; I've started a separate thread in General Health about whether to go private or NHS for the radiotherapy. Anyone with experience, please comment here. Thank you!

Hi CointreauVersial, sorry to see you here but welcome. I haven't posted much in the last few weeks as I have finished the planned treatment and am now waiting for scans next week.
My two adult sons still know nothing about my diagnosis and treatment, in fact the people who know anything about it can be counted on the fingers of one hand (DP and work people who needed to know). DP and I have not regretted keeping it from them so far - they both work away from home so with some covering up for cancelled holidays and pretending to be at work when I wasn't we have been able to keep the secret.
The reason for the decision was that I didn't want to burden them with it when they are getting on with their independent lives. Also, I was that young person and had to deal with my own mum's (unsuccessful) cancer treatment when I was nineteen - I didn't want to put them through it.
My treatment only lasted six weeks from start to finish (combined chemo and radiotherapy followed by brachytherapy) and I didn't lose my hair so I appreciate that keeping the secret was easier for me than it may be for others.
Hope this helps in case you are considering keeping it to yourself for a bit longer.

Thanks, @redspook. I was always planning to tell the kids, but was hoping to wait until it was in the past/done and dusted. I will struggle to keep radiotherapy a secret, as two live at home. I think my youngest already suspects she hasn't had the whole truth, as she was very suspicious as to why I needed an MRI. Hopefully, in the next couple of weeks I'll have a treatment plan, DS will have started his new job, and DD1 will be home from her first term at university, so the domestic dust will have settled. Not looking forward to it, because of course they will worry.

Hello @cointreauVersial. I'm going to PM you(need to work out how to do it) re your other thread. Bit hectic at the moment so might be tomorrow.

@redspook, good luck for next week.

CointreauVersial Hello and welcome to the thread (also known as The Patience Inn). There are others on here with knowledge of your cancer but I just wanted to comment on "the telling the children".
I was diagnosed in July with breast cancer. My DC are 21 and 23. The two of them had a holiday booked plus the youngest had his graduation. We deferred telling them until after those two events. It was hard, keeping that secret and I can't imagine how tough it has been for you to go through the surgery and so on without letting on. All I can say is that when I did tell them they were initially resentful that I hadn't told them earlier and the delay was only a couple of weeks, although they accepted my reasons. They were both very clear that they wanted to be fully informed in future. In turn I wanted them to live their lives as normal and not change plans or do things differently because of my cancer.
I get the not wanting to distract them from early careers and busy lives. I feel guilty because although cancer can strike at any age I was an older mother and they are facing this in their early 20s.
I found this blog useful when I was mulling over the dilemma.

Thanks skap. Will have a look at that blog. Yes, I spotted a few mentions of endometrial/uterine cancers as I scanned through. Many of you are on tougher journeys, though, and I can't imagine having to combine all that with looking after small children. My three are effectively adults, and have been amazing since I've had the op, cooking meals, fetching and carrying....it's a side to them I've not seen before, and I'm proud of them.

I fully expect them to be pissed off at first that I didn't give them the whole story, but I'll take it on the chin. DH also has redundancy hanging over him - that will be more bad news for them in the New Year I expect. Gah.

CointreauVersial, I am very sorry that you need more treatment than you had expected, and of course you will be worried now. I hope your meeting with the oncologist gives you all the information you need atm, and it may be somewhat reassuring, maybe?
I don't have any DCs, so my opinion isn't so relevant, but my feeling is that yours may think you should have told them earlier - there's a risk if you don't that they will always wonder if you're keeping them in the dark about something.
This thread is a good place for getting advice and support, grumbling and worrying! But also for sharing good news, and I hope you will have some of that eventually.

Cold cap worked too well and I had an episode . My core temp plummeted and I went a bit weird . Loadsa people making sure I was ok .
Chemo switched off for 30 mins. Temp bought back up to normal and chemo resumed .
BUT ... it means I am not permitted to continue with cold cap . Watch this space for hair news prob lose it starting two weeks time . Might book haircut .
And I couldn’t start Her emptiness . That will happen next week now.
Now on my couch under two blankets and with a hot water bottle .

Lovely Nurse said the right thing and just asked , gently, if I was disappointed.
At least I tried . Not everyone’s body can cope .

Her emptiness = Herceptin.

Trumpton. So sorry to hear that your session was so traumatic. I hope you are being well looked after and beginning to feel better.