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

@Skap .oh that’s horrible for you .
Huge sympathies .
All healed now ready for the next onslaught !
Festival is inter-Celtic . Many many ceilidhs and workshops and music everywhere .
It’s going to be fab .

Trumpton that sounds fantastic, wish I could be there. Do you dress up? Perhaps we could have a virtual celeidh here at the Patience. .
Still waiting for a scan.....

Ha ! Thursday night is fright night . Other than that it’s comfy clothes to fling yourself around in !
A virtual ceilidh sounds fun !
Hope you are not waiting too long !

Skap sorry to hear that you are unwell. Even worse that it has delayed treatment. I hope the scan has shown nothing too serious and that you can get on with your treatment.

WTF I hope you are OK today after the Herceptin yesterday and no troublesome side effects?

Trumpton hope your appointment tomorrow goes well and that they can do the reconstruction on the way you want it.

I think there are some others having appointments/treatments today or in the next few days. I am finding it hard to hold on to the details but very best wishes.

I am feeling very stupidly down at the moment. I had thought that after all of the heavy duty treatment this phase would be the easy bit but what with this and the family stuff I feel a bit like I have been hit by a bus. Just having to hold back from crying at every turn. I think part of it is recovery from the virus I had last week but it has taken me by surprise.

Hey ho! I am sure it will pass but could do without it right now.

Sorry to hear you are feeling blue, meercat. You’ve had an intensive set of treatments this year and your chest infection etc with your family troubles on top, so I suspect that feeling down and weepy is probably exactly what you should expect from time to time. Can I offer you the fleecy blanket and best seat in the house at the Patience for this evening?

Bridget did you manage to get your last dose of poison today? I very much hope so (in the nicest way).

Let us know how you got on today minou and I hope it was optimistic news from the one stop shop.

Sorry also to hear that you are stuck on a ward and not feeling great, Skap. I hope they’re keeping you comfortable and running whatever tests are needed so you can get out of there soonest.

Good luck for your appointment tomorrow Trumpton.

Emperor I’m sorry to hear that your DD isn’t well either and needing an op. Is it something that should be straightforward to resolve with the procedure? I hope she and you are feeling a bit better, and that your DH has restocked the cupboards. It’s really important to be looked after when you’re dealing with chemo. It must be very difficult when your DD also needs care and you can’t give it as you normally would do.

I saw the neurologist today about my vertigo and have been sent for physio to try and retrain my brain or something. The Epley manoeuvre worked like a charm in setting off the room spinning but of itself won’t be enough, he said. The fact that I’ve had it now for about 4 months means it’ll take a bit of getting rid of.

Tomorrow I’ll be having the blue dye pre-op and then an early night ready for op early on Thursday. I will let you know how blue I go!

Waves to Snows, WTF, Fudge, Toofarout, Zorgoth and everyone else besides. Stay warm!

Hello, waving at you all from the chemo ward! Neutrophils had skyrocketed to unprecedented levels today, and I'm about half way through the final infusion, which takes an hour - hurrah!
Skap very sorry that you are poorly and treatment is postponed, I hope you have had the scan by now and are heading home.
meercat sounds like you have the post-treatment miseries as several others have reported - and of course the family troubles to worry about too. Much sympathy, can I get you a drink and a packet of crisps?
Good wishes to everyone else.

Hi, I had my tests today and I think I will get the all clear. I had a biopsy and will need to wait for the results, but the consultant said he us 99.9% sure it is cysts.

I want to thank you all for your kind words, advice and support. I hope this isnt too soppy, but I wish you all love and support for the treatments you are undergoing.

Thank you

Minnou, lovely to hear your good news, all the best to you.

Bridget glad you've made it this time. You're probably just about finished now
I'm in London burbs and saw a Great Spotted Woodpecker on the bird feeder yesterday. Very exciting.

Brassica good luck with being blued tomorrow. I'm kind of imagining a smurf look.
Hope the vertigo training works for you.

Meercat I think things just sometimes hit you hard. Family stuff piles on added stress.
It will pass bit sometimes we all need a bit of downtime.

When you think about it, everyone here has reason to be stressed. You're all bloody amazing. No one should ever feel guilty for having tears or feeling down.

Trumpton enjoy your festival, it sounds amazing.
You do a lot for your MIL, she is lucky to have such a fab DIL.

skap hope things are happening on the ward for you. Sounds very stressful.

Emperor wow, you've got your hands full at the moment. Hope the local girl is some kind of Mary Poppins to you all!
Good luck to your daughter for her surgery.

wtf sounds positive on the heart front, fingers crossed for that to continue.

fudge hope you are comfortable and well looked after post op.

Good evening to everyone else.

The Patience is gearing up for Halloween . No tricks only treats for us.

minou fantastic news! So pleased for you and really glad you have turned out to be in the big group! And I personally am all for a bit of soppiness....
skap sorry to hear you've landed up in hospital...fingers crossed you break out soon!
Aw meercat ....you've done so well getting through it all....and all the cancer crap that we have to deal with is on top of real life that still goes on and throws a curved ball here and there, like family issues and horrible viruses. I'm sorry you're feeling down. Just remember that nothing lasts forever and you will feel better than this. Soppy hug in the meanwhile...
trumpton i have to take my hat off to you for planning to party hard with all this hanging over you. You're made of strong stuff girl!
zorgo hope you're doing ok with the waiting game.
bridget ...last chemo? Woop! And I hope last set of side effects are kind to you unlike mine!

I've been a bit quiet, cos I didn't want to jinx the fact that I'm feeling kind of...ssshhh....ok. My mouth still hurts like buggery m, and I've just had a visit from tunnocks teacakes man who told me he's getting over a terrible cold if he's given it to me I'll kill him but that aside....yes, ok.

Apols to those I've missed but thinking of you all

brassica I had the radioactive stuff the day before and the blue stuff when they were actually doing the op, so woke up blue and had to ask the staff to warn my lovely man when he came to get me so he didn't run away screaming at the grey/blue entity before him! To be fair, I am quite pale of skin so maybe thats the reason it showed up.
Good luck with it anyway

Three cheers for that, @minou123!

@Minou123 that is really excellent news, and I hope you get the official all clear very soon! I'm very happy to get some love!
WTF you've had more than your fair share of post-chemo ghastliness, so I'm decreeing no cold, mouth to stop hurting prontissimo, and strength and stamino to be restored without delay.
We got home at 7.30 and ate supper in front of Bake Off final, I fell asleep as they started on the show stopper and woke when it was all over. Now in bed. Night all!

Hi all, just dropping back in and sad to see the loss of some of the lovely posters who were so kind to me when I first posted in here a few months ago. Namely TQ, Lesley and purple unicorns.

Quick re cap, I was sent off for a scan after what looked like an infection in my gall bladder and raised LFT's, no stones or sludge seen but a couple of polyps found. Polyps in the GB are where size matters! Around 10mm or larger is almost certainly malignant, cancer in the GB is usually found late stage as there are no symptoms normally until the cancer is advanced.

One of the two polyps was borderline size so agreed with doctors that we would scan again in 6 months, I am really averse to surgery if not absolutely necessary.

Had my consultant appointment on MOnday and as I'm now symptomatic he thinks the polyp has grown (which is Not A Good Thing) and blocking the bile duct which causes the symptoms. He also felt what he thinks is either a lump or a hernia in the area of the pancreas so I'm waiting for an appointment letter to have a day of tests. I'm having an MRI, ultrasound and a colonoscopy followed by a camera down my throat.
I'm really quite frightened but determined to be in absolute denial until someone medical actually tells me I should be worried.

Can anyone tell me about the colonscopy procedure? I don't want to google anything at all but I would like to try and reassure myself a little about stuff like that if I can. ( I know that probably doesn't make sense!)
Also, has anyone any idea about how soon results come through? I know with the ultrasound the sonographer told me straight away what he had found but not sure about MRI and the colonoscopy or camera thing.

wotonearth I'm so sorry you have had bad news, I hope all the investigations and results happen very soon, it's worse when you don't know what's going to happen. MRI results can come through very quickly, certainly when I last had one the doctor was able to see it within a couple of hours.
Brassica thinking of you with the lumpectomy today, and Trumpton with the consultant appointment and scan today.
Skap are you still in hospital?
Snows have been thinking of you, how are you doing?

Hello all can I join you?

I was a member of the tamoxigang a few years ago and everyone was lovely. Unfortunately I’m back again. I previously had DCIS high grade in left breast so had a wide local excision and radiotherapy. Thought I had got away very lightly until my most recent mammogram in June showed mass in left breast again. Biopsy showed DCIS again and was told I should have mastectomy but could have another WLE if I wanted. I was perhaps too blasé about it as I chose WLE and waited until beginning of September for op as I wanted to go on holiday for the first time in 7 years. Unfortunately results of op showed there was also a grade 2 tumour in there. Tumour was completely removed but didn’t get clear margins for the DCIS. Was told I now need mastectomy and just wish I’d gone for that in the first place! I had to have a Sentinel Node Biopsy last week to check if it’s spread and get results next week. so now have a blue boob for who knows how long. Am going to have a DIEP immediate reconstruction when I have my mastectomy but still don’t know when. Rang consultant’s secretary yesterday to be cheerily told “ don’t worry we haven’t forgotten about you you’re still on the waiting list, He’s on holiday til next week so we’ll discuss when you’re having your op in the next couple of weeks.” She couldn’t tell me how long after the “discussion” my op would be. The waiting and not knowing is unbearable. I keep thinking what if there’s still cancer in there?
Maybe I’m just having a particularly bad day today!

Wotonearth I’m sorry you have so much worry at the moment. Let me put a shout out for @Borntobeamum who I know has had colonoscopies and can tell you what to expect.

MrsL that also sounds like a whole lot of worry for you and the secretary’s tone doesn’t sound very appropriate. Have you got people to support you at home? We will look after you here while you wait. Order what you fancy from the bar!

Thanks Bridget - it’s the pre-op today (and I’ve just been told I have to have a guided wire thingy shortly which I hadn’t been told about before) so it’s all treats for me. Op itself is tomorrow (Thursday) xx

Thank you Brassica I’ll have a large glass of red wine ! Am I right in thinking you’re having a lumpectomy and node biopsy? I’ve had the guide wire twice and it’s not as bad as it sounds. I had the injection for the radioactive tracer last week and despite being told by one lady that it would really hurt it didn’t at all! I hope all goes well for you.

I do think being stuck at home off work doesn’t help. Most of my friends work so I end up with too much time to think. My partner is very supportive and lovely. We’ve been together for 2 years now and I feeel guilty that he has to go through this with me already.

Thanks for the shoutout Brassica
watonearth Hello - sorry you’re here but welcome. I’ve had a couple of failed colonoscopies and despite pain relief, they were abandoned due to my severe diverticular disease.
My cancer was discovered via a CT colonography and I had surgery in March. My wonderful consultant was determined to have a successful colonoscopy and planned to use optimum sedation and a paediatric scope. As it was, I had a 1g paracetamol drip prior to sedation and this seemed to be the answer for me as he was able to use a regular scope and this is how we will progress in future.
Prior to the colonoscopy, you will need to have a good clear out, and also follow a low fibre diet for a few days before. You will be advised all about this when they give you your Moviprep which will empty your bowels. It’s not pleasant, but the knack to taking it is chill it well, flavour it with cordial such as apple flavour. And drink it through a straw.
In reality. It’s vile. But a necessary evil.
With regards to finding out the results, that’s the beauty of a colonoscopy, because you find out immediately, or at least I did. They went through it with me and were very patient when I wanted to ask questions about it.
I hope this helps, and can put your mind at rest a little. X x

Hi All, just checking in. Had my ECHO at the Christie today - heart is ok, thank god! Had been stressing out that there would be s problem and wouldn't be able to have the herceptin.

Back to th GP this afternoon for more anti-anxiety drugs and am going to ask about something to help me sleep, as I'm having massive problems at the moment and feel exhausted. Back to oncologist in 1 week, then probably starting chemo on thurs 7th - still trying to pretend it's not happening - not going well with that one! The reality of everything is starting to hit me now, and I think I'm veering back to complete panic mode!! still, my 6 year old is cheering me up - he is unbelievably excited about Halloween tomorrow - so I've been out to buy pumpkins and decorations today - can't wait for him to see them when I've picked him up from school

Take care everyone - thanks for all of your support; this group has helped me to keep sane in a very difficult time, and has provided such a lot of help and support - I am extremely grateful.

Hi all. I got home last night all clear. They had suspected a pulmonery embolism and had to have ct scan. It was a long day. Back to day for chemo so now it will be every Wednesday. They botched the cannula for the CT scan so now I've had 3 cannulas and one blood test in 3 days. My hand is very bruised and my "excellent" veins have taken a battering. So I'm considering a PICC line. They don't offer a port or Hickman - it's a small hospital and I consider I'm lucky to get chemo there otherwise it would be a 2.5 hour round trip to t'other one.
The staff seem slightly reluctant because I have a good vein. But they can only use right arm and I have 8 more weeks to go plus muga scans. It would mean one less trip to hospital each week as the district nurse would come and flush / take bloods.
Can I ask pros and cons of PICC line?
Does it dig into your arm?
What happens with the dangly bits?
Does the tape cause irritation?
Can you feel it when you sleep?
Most importantly to me can you bend your arm? I've had a cannula in the elbow and it was very uncomfortable to sleep.

@Brassica the guided wire is a little like the biopsy. You get a local anaesthetic first and it's a bit uncomfortable. Then they do a mammogram on your (thankfully numb) breast to check the position.

Will catch up properly later. I am in the midst of the Battle of the Pre-Meds. Chlorophenamine winning at the moment but come bedtime the Dexamethasone will triumph.

Sorry everyone for the radio silence, I’ve been lurking while feeling too grotty to post. Can I have a plug socket at the Patience for my electric sofa blanket and haul up a chair?

I had a portacath inserted in my chest and first round of chemo on Thursday and just starting to feel more human today. @skap I don’t know how PICC lines compare but I’m certainly hoping the portacath will save some time and cannula misery down the line.

PS thank you to whoever pointed me to the Ticking Off Breast Cancer site as it’s been a big help.

Brassica sorry I

Whoops! Let me start again.
Brassica sorry I got the day wrong. Hope all goes well for you.
MrsL17 that is really bad luck. You're in a very difficult place at the moment, waiting for results and dates. It will be hard for your DP too, I can understand the feelings of guilt, I had them with my DP too, but also so glad she is there for me!
Skap - so no pulmonary embolism, but your veins have taken a battering! I have no experience of PICC lines but if not too uncomfortable, it does sound preferable to having someone stabbing away at you every flipping week.
Piggles, good to hear from you, yes plug socket right here for you, make yourself comfortable! How many chemo sessions will you have? One down, anyway!
Zorgoth hope you got something to help with sleep, it must be very hard having to keep up with and keep cheery for a 6yo, even though he gives you a lot of pleasure too.
Right on schedule, food and drink all taste foul now, damn it!

Hi all,
I've just been for a lovely head and body massage so I'm floating! This is all part of my tlc plan.
I'm going along ok but very fed up with sore mouth now....one original ulcer inside my bottom lip which still hasn't gone and a new one yesterday on the side of my tongue ....so minor but so flippin painful! Doing alright apart from that.
MrsL17 I'm another one who started with surgery for dcis a few years ago (was also on the tamoxigang thread) and now being treated for a lump. I think mine is a bit more risky than yours though by the sound of it so they're throwing everything at it this time when I escaped with surgery only last time....not that surgery is a walk in the park but you know what I mean. Hope you get some definitive answers soon. Stick around in the meanwhile.
For those of you awaiting, having or just done chemo...wishing you all good things and minimal side effects.