Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

ranout the PICC line is ok. I have met a few people with them who are really pleased with them. I think I will be in the end, I have only had it a couple of weeks as my 1st chemo was via the vein in my hand. It is an odd sensation to begin with, I think it maybe presses on nerves slightly, so I had sensations in my wrist & I could feel it if I moved my arm too high in my upper arm. It took around a week for me to not be as bothered by it. I am a bit of a wuss if looking at the tube coming out of my arm. I have a PICC cover (from bold beanies) which is a liberty floral print & my Mum thinks it looks like I have a sleeve tattoo, so that looks less medical and makes me feel better about it too. It is ok though. My uncle is a doctor and he suggested if issues to re-site it to my chest, but he said whatever I do I need one somewhere for ease with the injections etc.

I chopped my shoulder length hair (which was blonde/violet type highlights) to a close crop. It had a slight quiff at the front until it started thinning so much. I went super short as had heard the cold cap was better the less weight there was on the hair, but it doesn't seem to be working for me.

Lesley I hope the injection works and you manage the chemo 2mo. It reassures me to know you have had similar with your glands (although the windpipe propping sounds quite scary!)

purple I hope the surgery date comes through quickly.

Waves to everyone

Pebbles how did it go? I hope no news is good news?

noodles sorry to frighten you. I like to think of it as a good sign that the whole body is reacting to the chemo so hopefully any cancer cells are too :)

Also hoping it went alright Pebbles

Waving to TQ

Hello all - thanks for the messages. Well, it seems I'm still in limbo! I thought I'd know one way or the other today but more tests are needed!

Basically they THINK it is something called a Radial Scar - an area / lump that looks like a malignant cancer on a mammogram, but is infact benign. However they don't have enough tissue from the biopsy to rule out that it's a cancer.

So - I have to have another bigger biopsy on Friday. Still under local anaesthetic, but more invasive / takes more tissue through a vacuum!!!! (images of a Dyson attached to the end of the needle this time!!)

Then have to wait probably ten days for the result of that biopsy!

If that shows it's benign then it can stay where it is (apparently they used to always operate and remove radial scars as they could cover up cancers on further mammograms and would need investigating every time a mammogram was done) - but this new system gives them a definitive result!

Or, if malignant cells are found then it will mean an operation. It is apparantly 6-8cm across so quite large which is the bit worrying if it is cancer. Does large always equate with advanced can anyone tell me? I don't mind how much they'd take (it was suggested if cancer it would be quite a large area) but I would worry about how advanced that meant a cancer might be.

I was half an hour late going in, so it was nearly 6pm before I was seen - thank God I'd had 2 diazepam!! The consultant was very hard to understand - a very heavy accent and not particularly good at explaining or reassuring (I hope that doesn't come across wrong - I just desperately wanted to take in all he was saying but found it so difficult to follow) But my partner was great at asking questions & this time I had a lovely Breast Care Nurse and she took us into a room after and explained it all again.

I mentioned to her that last week I had been told I was between a 3and a 4 on the Bi-rads scale and told it was 50/50 and asked had this changed. She said my scores were 4 for the mammogram (ie appears as a probably malignant cancer) 1 for the ultrasound (ie - didn't show up on it, which radial scars don't apparantely) and 3 for the current biopsy (ie proabably benign) - so I am a strange case with weird results and they need to go further to rule it out... so if you don't mind I might hand around a while longer if that's okay!

Appointment is 11.40 on Friday - so quickly in again!

Sorry this is so long and sorry I'm talking so much about myself and not up to any kind of speed with what you are all going through... but I think you are all amazing - thank you!

To be honest I'm not even bothered what they're going to do to me, I just want it done so I can get back on the chemo. I feel rubbish now and I'm panicking because I know it's not the chemo making me feel ill as it's been over 3 weeks now since my last lot. I'm going to ring them again tomorrow and keep ringing until the get so sick of me that they'll have to book me in.

Do you another appointment rearranged? It's a nightmare trying to get into my doctors. I didn't know lymph nodes could block your wind pipe

Pebbles that must be really frustrating but it does sound promising that it isn't cancer! Feel free to hang around here for as long as you want but hopefully when you get your results back you won't need too

Pandora at least you need to worry about work for a while although I've been off now for 3 weeks and although I'm missing it there's no way I could go back at the minute. You'll have plenty of time to get organised and do whatever you need to do.
I used the clippers on my hair and I've just gone over it today with a razor so it's all smooth

@purpleunicorns keep phoning them it's always the ones who shout most who get seen first. I hope you get some news today.
@Pebble21uk everything's crossed for you. My lump in my breast measures 5cm x 5cm and luckily it's stage 1 or whatever the term is. I'm still learning all the lingo!
Quick question ladies I'm venturing into town with the kids today is there anything you'd all recommend clothes wise for ease of picc line or for chemo?

Leslie a friend of mine who is a health visitor said when she was nursing they were always told that the more grotty people felt during chemo & the more side effects people have meant they knew chemo was working. I have taken a bit of comfort from that.

There was a reason I said my hair colour yest as was about to complain it is now a mousey and grey short crop (my friend popped in so I lost my train of thought when posting) it used to look how I wanted it to, so I feel less sad at the thought of shaving it all off now as I feel it has totally changed since my diagnosis. My neighbour (who turned up yesterday afternoon with 2cups of tea, a magazine & flowers is getting some clippers today for me hopefully & will help me shave it off)

I have been feeling like I am totally on my own at the moment partially down to my marriage break up (we separated over 2 years ago but have got no further with it due to my ex's behaviour) I feel let down not to have that husband support at the moment, plus we have been trying to sell a house which fell through 2 weeks ago, plus just dealing with cancer on top of all that all feels too much to contend with in one go. Then people are really kind and it makes it all feel manageable & slightly less lonely. I think my good cry over the last couple of days has done me good too..

purple keep calling & make a royal pain of yourself. You are bound to be reading all sorts into the fact you are feeling crappy & it isn't due to the chemo. I hope you get a date for surgery ASAP.

pebbles that sounds nice and complicated and yet another wait unfortunately for results. Fingers crossed it will end up being benign. At least they are being thorough and you should have a definitive answer in the next couple of weeks. When they do the biopsies they may be able to put your mind at rest if you have any questions then. My radiologist consultant who did my biopsies knew exactly what she was looking at. She said to me it was definitely something, but that it was treatable and I would be fine at the end of it. Her words were what have stopped me going into a blind panic when waiting for ct scan results etc. They may be able to give you a positive outlook even if it does turn out to be malignant.

Waves & hello to everyone

ranout my PICC line is on my right side (cancer is left boob/node) and it is in my upper arm. I have mainly worn vest tops or short sleeves with a PICC cover over it (the hospital put a tubi grip over it when they do it) I have worn a couple of short sleeved cardi's to cover it, but it has been so hot since I've had mine I have not worn long sleeves. In winter long sleeves would be fine, but probably nothing too tight. Happy shopping

ranout for chemo (esp with the cold cap) it gets cold. Sounds obvious, I wore a wrap type scarf round my neck whilst I had mine. They gave me a blanket too and I had a heat pad in my lap the 2nd time as well as a cardigan.

Thanks @noodles44 I thought I'd need thin layers.

This has made me laugh thus morning. Me and the kids are in our local cafe and as everyone asks are we going away so I sat no I've been diagnosed with breast cancer. Obviously they are shocked but not as much as my kids when the owner serves them up icecream for breakfast!

Hope everyone has as good a day as they can.

Morning morning!

Sorry about your continued uncertainty pebbles: that must be so hard

Also sorry to hear about people's hair loss. I've lost handfuls, but it really doesn't show, as I've got so much hair. The thing bothering me the most is not being able to dye it. I'm not psychologically ready to be grey. Sucking it up, though, obvs.

The massage was glorious. I felt all floaty afterwards.

Booked in for another one in September; it makes such a difference having things to look forward to.

Hope you're feeling less weepy today noodles ** It must be so hard doing this without a partner. My DH can be difficult, but he's been a real rock through this process. You'll just have to lean on us all the harder!

Hi Lacies! Hope everyone doing ok today.
Leslie hope your injection worked and you were able to have your chemo. Thanks for replying to my hair concerns too, interesting you had the same - I am still really anaemic so maybe it's down to that.
Pebbles sounds like good news. Hope they have something more technical than a Dyson though .
Ranout the only thing I found with my picc was that sleeves couldn't be too tight. Otherwise most things ok. I had a cover which folded it up inside two layers of fabric (picc perfect but there are loads of companies that do them). Much better than the tubigrip.
Had my review appointment yesterday only they hadn't done the CEA test in last bloods - doh! Got results by phone after they did more bloods after appointment and is 3.1, up from 2.6 in April but apparently under 3.8 ok (and from reading seems is a not a very accurate test anyway). Appointment with surgeon after holiday when he will advise on follow up on his side (oncologist seemed very surprised I hadn't had one already). Feeling a bit down and no idea why as good news. Maybe prospect of packing though as off on holiday tonight - better stop procrastinating and get on with it!

Noodles good luck with the hair shaving, make sure you have some comfy hats on standby as can get a bit chilly. Do you have family/friends around you? I'm not surprised you're feeling a bit down with all that going on too

Tayto enjoy your holiday, hopefully it'll take your mind off things for a bit

I've rang the hospital again and the nurse said she's been chasing the surgeon since last Friday and that she's marked it as urgent. Hopefully I'll hear something by tomorrow but I'm not holding my breath

Hi everyone and hope you're feeling better noodles & Leslie
*
Tayto* I felt exactly the same after my last appointment, and interestingly my psychologist said that's very common. She also said "we" are more susceptible to depression at the end of treatment than any other time - something like a feeling nobody is looking after you and a fear something might come back when nobody is looking. So a holiday might just be what you need!

I saw the gp and he's convinced I have a hernia but told me to wait until I see oncologist for him to confirm what scan shows which is annoying. As I'm off on holidays I won't bother complain and will see how I'm feeling when I'm back.

How did you get on today Leslie? I hope you were ok to do the chemo & don't feel rotten.

Thanks Miles, I will do. In all honesty I am better off without my ex. I left with the kids because he was an angry man with alcohol issues. He ended up in rehab last year, lost his job this year & seems to be gradually sorting himself out. It has been a stressful couple of years though & having a cancer diagnosis at the end of it feels very unfair. I am also the only one who has the kids, so hence why my parents helping and taking them to theirs for a holiday has been a godsend. I am very lucky to have some fantastic friends too, so it is not all bad.

Thanks dulce & purple I am slightly better today. I didn't get my head shaved yet as forgot I had a PICC line dressing change this afternoon, so went to my friends for a cuppa 1st and she came to hospital with me instead. I will brave the shave 2mo

Well done with the phone calls purple fingers crossed you hear 2mo (keep chasing though)

Mri breast and spine done. My breasts didnt fit in the containers so had to have all the paddintg removed so was very very uncomfortable. Then had a panic attack once in the machine and i was screaming to be let out and then vomited. It's a brand new mri suite that's only been in use for 3 days. I've got at least 5 more mri ahead.

Oh Pandora I'm so sorry. I've never had an MRI (only CTs) so I don't know what they're like. Can you get sedation next time?

Pebbles sounds like they're trying very hard to find cancer but haven't succeeded so far, so still keeping everything crossed.

Leslie how is your toe? Recovering I hope? Mine still hurt when the dog steps on them! Not sure what they're doing other than weeping...

Purple sorry you feel rough - is it pain or general horribleness? I don't understand why they won't give you chemo until after the op?

Hello, thought I’d join! I’m waiting on results and waiting for a surgery date to have my tumour removed. How quickly did you learn all the lingo? I’m trying to keep up but always have more questions when I get home!

TQ your toes sound really painful. Have your nails fallen off?
I got a set of foot care bits from my sister in law, it has nail oil in, Have you tried using that at all? Not that it sounds overly promising if they are weeping. Sudocreme also has healing properties in it, might be worth slathering on at night & putting socks on to go to bed in (if you can stand them)

pandora that MRI sounds awful. I had one for my head, I am not claustrophobic at all, so it was ok, but I feel for you as it went on for ages compared to the CT scan. Plus I developed a jaw clench which meant they had to redo part of the test.
Can they not do CT if you have such a strong reaction to being in there?
I only ask as my consultant saw what she needed on the CT scan, but I ended up with a bone and MRI just to make sure all was clear.

Oh my goodness! You lovely lacies have been so busy since I was last on!

Sorry to hear about hernias and dodgy toes and pandora that MRI sounds dreadful - I am a bit claustrophobic too and I know this can be a problem but sedation is often an option if you’re having more of them. I really hope things start to fall into place for you soon - you’ve had a rough time

Good luck with the shave tomorrow noodles

tayto that sounds positive but I can understand why you’re feeling strange - I get that whole feeling of now I have to wait and see if I’ve ‘got away’ with having the chemo and surgery or will it all come back while nobody’s looking!

How are you feeling Leslie? You have also had quite an eventful time. I hope you get some answers soon (you’re waiting for scans I think?? Chemo brain is still firmly in place )

wildboar welcome and sorry you’re here too - what sort of tumour is it you are having removed? I hope you have good support? It’s all very stressful and surreal so good luck with it all

And to all you other lovely lacies - I can never keep track of everything from reading to typing - my head is too sieve-like

And good luck tomorrow pebbles

Good evening all

Chemo went well thanks :) I have that usual weird post-chemo taste/feeling a bit out of it. But otherwise I actually feel better. Probably all the fluids and lovely medicines! I had a lovely foot rub too.

Pebbles that sounds tentatively positive. But frustrating that you still have no answers. Good luck with the next biopsy

My iPad is being a right pain so I'm going to have to post in short bursts. This will be the first of many so brace yourselves

purple try not to panic. Easier said than done, I know. The chemo side effects can linger quite a while - sometimes six months or more! I'm glad the nurse is on the case. Hopefully with you pestering her and her pestering everyone else someone will get fed up enough to sort it out

I've been really lucky with my surgery. I think they have a little flag next to my name as I always get VIP treatment. They can usually magic up a same day appointment or at least a phonecall.

ranout I hope you had a fun shopping trip. I don't think you need anything special for chemo. Though don't do what I did today and wear too tight sleeves so you have to unbotton your shirt and get your arm out surprise ice cream breakfast sounds fab!

Miles I'm glad you enjoyed your massage and yay for the next one already being booked :) annoying about the hair dye - how long is that for?