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

Oh yes, the weight gain. Dulce, I've gained two stone in two months

It's steroids, chemo hunger (and wanting to take the taste away), and comfort-eating.

I hate it, but I think I'll have to make my peace with it for now, until after the chemo's finished. All my knickers are too tight, though!

Leslie, sorry to hear it's spread to your lungs . Mine made me very breathless as the nodes in my lungs were inflamed, but apparently an enlarged spleen (which I had) can also cause breathlessness. My sympathies: it's very frustrating.

My haem told me I can't dye my hair due to risk of infection. I'll probably do it once my neutrophils have recovered after the last chemo. Probably bright blue, to celebrate

Bright blue hair sounds fun! Good luck today Miles :) breathlessness is grim. Has that improved with the treatment? I hope so.

Oh and the aromatherapy massage sounds lovely too. I had a massage on holiday and it was blissful. It's good to see that more places are offering cancer-safe treatments though.

Ct scan done.now gotta cancel and rebook my echocardiogram as I will be radioactive this afternoon due to my bone scan.

I've definitely put weight on, party due to trying to get rid of the awful taste in my mouth and partly due to thinking sod it, I've got cancer so I'll eat whatever I want. I really must stop as all my trousers are elasticated

Waves to Planned. This really is the worst part when you're waiting for the treatment to start. You're in the right place here, there's a few lovely ladies with bowel cancer who can help you out with any questions you might have

Good luck to everyone waiting for tests/results today

That's the thing purple. I've been thinking well I've got cancer so surely I should just enjoy eating what I want? After 3 months struggling with anything cold, I've been having 1-2 ice lollies a day, plus loads of other crap I don't normally eat. Oh well. Gonna have to face this holiday like this and worry about it later. I've caved in and bought a swim costume as I was feeling quite self conscious about my belly. I've also bought a higher bikini which covers the bottom part of the scar (I seem to have been left with a hole at the bottom of the scar where they were draining the wound, am I the only one?)- I don't mind the actual scar but this hole makes it look like my belly is split in two, not to mention the fact that I appear to have two belly buttons. I know it's vain in the scheme of things but it's annoying especially when I love swimming and sunbathing

Can I be really inappropriate?

I was hoping the chemo would help me lose some of this weight. You know silver linings etc

Pandora that's not inappropriate at all! I lost weight after surgery and was hoping it would stay that way but sadly for me it went the other way!! Hopefully for you it will :)

Dulce I'm sure you'll look lovely whatever you wear but could you get a kimono/wrap type thing just incase you do feel self conscious? I've never worn a bikini in my life so you're braver than me anyway

Pandora you might go the other way. Once chemo starts you'll find that food that you normally love tastes weird so you might lose weight. What doesn't help is the lack of energy so you'll find yourself just slobbing about on the sofa most of the time

Sorry the hear you’ve just been diagnosed planned. I feel your frustration! I should have been referred months ago and only have just been to see a specialist. I’ve not been told specially I have cancer but from requesting by scan notes it looks like a high chance.

I’ve got an adrenal tumour and possible lymphoma. SCan says SUV uptake 8.4 (for lymph nodes) and 7.7 for adrenal tumour. Does anyone know if that’s good or bad?

I’ve been told they can’t know 100% until it’s out.

Pandora oh god that properly made me laugh 😂

Planned - what an awful journey for you, sorry you had to go through that

Hello

Jeez I’m having a bad day mentally. There was an MDT meeting this morning and I don’t know if tuesday’s biopsy sample was done in time so I don’t know if I was discussed. I’ve called, been passed around a few people and apparently someone is going to ring me back. Ffs I’m a mess. I keep bursting into tears and if I have to wait another bloody week for the next meeting I may go and throw myself off a bridge (I won’t).

I realised yesterday that it’s a whole month since the bowel tumour was found and I’ve had sod all treatment. How is this ok?!

Tso how very frustrating. Forgive me if you've explained before as I've missed a few posts but have you been told if you're having surgery first or chemo? What about staging?
I felt the same about my treatment being delayed after surgery but I was reassured problems arise when the delay is over 3 months so try and not panic. Easier said than done I know. Good luck

Hi Dulce

Originally I was told surgery first but when I had my tv first CT they found a lymphoma in my chest, which I discovered on Tuesday is on the outside of the lung, so they want to shrink that’s with chemo first now and I think the hope is that the chemo will also shrink the colon tumour. Tbh because the specialist nurses have all been on annual leave at the same time I’ve had no one to contact so I’m pretty much in the dark.

They were confused by my presentation at the last MDT meeting (2 week’s ago) and thought it may be two separate primaries which the biopsy on Tuesday was going to confirm or deny.

The pain after I eat is getting worse and it feels like I’m getting nowhere with medical help. I know that’s not strictly true but I’m running out of patience.

Tso I'm sorry you are having such a bad day... I'm new and can't really offer anything, it's a whole new world to me, but I can send

Had my vac assisted biopsy this morning. Nothing like the last one! Very invasive and painful - had to have a second lot of local anaesthetic part way through, but it's done now! My poor battered and bruised boob! Because of where the lump is and where the consultant performing it had to stand, it meant my face was right next to the suction equipment! They advised I keep my eyes shut, but I did on ocassion open them to see the contents of my boob disappearing up the tube! I imagine it's a bit like liposuction!

I have an appt on Wed 22nd for results - so a long wait. They tried to bring it forward to next Wednesday's MDT meeting, but because of the type of biopsy it is it takes longer apparently.

An afternoon of TV and painkillers.
I hope others having scans and procedures got on okay today.

Tso that sucks. Have you got an appointment booked to see oncologist though? I had surgery on 4/3, saw surgeon on 22/3 when he confirmed pathology results as cancer, first oncologist app on 28/3 and started chemo on 23/4 (due to wound needing more time to heal). So time does seem to go on and I get how you feel. To be honest nurses on holiday is no excuse, there must be someone in. If you don't have an app I would try to push for one. This must be ever so frustrating for you.

Wildboar sorry I have no idea what those results mean, hopefully someone will be along soon who does. Do you know when you'll be getting your results?

Tsonly I know it feels like forever but it takes so long as everybody's treatment plan is tailored to them so they're trying to come up with the best plan for you, although this time of year a lot of doctors take their holidays so that can cause a delay too. A few weeks won't make any difference to the results of the treatment. and for you x

Ouch pebble! That sounds awful, I don't think I'd have dared to look. I know it's not ideal in this weather but try a hot water bottle on your poor boob to ease the pain a bit

Hope you managed to get sorted with the job centre TQ

Another one of my surgeons is on annual leave so they're getting my consultant to chase things up

Dulce

Nope no appointment with anyone at the moment. Zero zip zilch.

Excuse me whilst I scream at the void...

And apologies for awful grammar and typos in my previous post, it appears I can’t type today and my phone didn’t get a decent education 😂

tsonlyme it’s so stressful waiting and not knowing! That’s what gets me too. I’ve found it helps to have copies of results and to ask lots of questions. I know that’s not for everyone though.

pebbleThat’s sounds horrendous! I bet you’re glad it’s over. Hopefully rest up and take it easy the next few days.

I get my results on Wednesday which I’m nervous about.

Hi everyone! I hope I'm ok posting on here. I'll start with my back story. I'm 34 with 2 DC, DS14 & DD10. After my DD was born I used the combined pill as contraception and I've only ever been with my husband. Tried a few pills until I found the right one.....suffered bloating and digestive problems and was diagnosed coeliac in 2012. Gallbladder out in 2014. For the last 2 years my period started becoming very irregular (sometimes v.heavy then nothing), even tho on the pill. In the last year I have pelvic pain, slight bleeding between periods and occasional pain after sex + bleeds. During my periods I get IBS symptoms too. My doc sent me to see the gynaecologist. He examined my cervix and whilst up there he said he wanted to do a biopsy as he saw something he wanted to check. He said he doesn't think it "looked" like cancer. Now him using this word alone terrifies me.....I came off the pill about 2 months ago and my periods are so heavy it's horrible. My biopsy was done on 30th August.....does anyone know when I might hear back? I just also clarify that I had a smear last year which was completely normal.....never had an abnormal one. We have to family history of these kind of cancers but I am so scared. This wait for the results is making me overthink everything. X

Best of luck with your results Wildboar

Tso that sucks to not have an appointment. Maybe one of the more clever ladies Leslie can give you some ideas of where to go. Surely someone must be able to at least book you in? Sorry I'm not helping, I'm just frustrated on your behalf!

Thank you tsonlyme. I really recommend chasing people up for appointments and results. I would have had my tumour removed by now if I had done the same. I was always under the impression that if it’s cancer they’ll act quickly, but it’s not always the case. With my pet scan results I went into a routine appointment and asked about them. I was reassured if they were bad, they would have been shoved under his nose (5 weeks after the scan this was). When he looked on his computer I saw his face drop and thats when I suddenly had referrals left right and centre. I was so annoyed!

Is there anyone you can call? I ended going into the hospital myself at one pint when I couldn’t get through.

Mumof diamonds I would suggest calling after a couple of weeks if you haven’t had them before. Fingers crossed all is okay.

Mum it's good that the doctor didn't think it looked like cancer, I have cervical cancer and they could tell pretty much straight away. It took around 2 weeks to get my results through but there's no harm in ringing them and chasing them up

pandora I haven't done chemo for long (have had 2 rounds so far, fortnightly with pretty much no time feeling normal since I started) but I am so nauseous that I really really hope no weight has been gained as I really don't feel like I have eaten that much. I was also hoping to shed a stone or two as a silver lining to having to endure the treatment. That said, I have mainly fancied rich tea fingers and avocado on toast, so not overly healthy, and have drunk lots of chocolate milk as have had acid indigestion. I haven't moved much either, my poor dog is waiting for my friend to come over & whizz him around the block for half an hour or so.

Pebble that sounds awful. It made me feel queasy just to read the description (but that does seem to be my constant feeling just now anyway!) Rest up infront of the tv and remember to keep topped up on painkillers so it doesn't suddenly feel unmanageable.

Leslie how are you after chemo yesterday?

purple will you hear back today re surgery? How frustrating. Can you request another chemo when you speak to the consultant if the date for surgery doesn't look like it will come soon enough? I know for me, which I know is different totally, but they are doing chemo before surgery so they could start treating it sooner and for a less invasive op as had I had op 1st it would have delayed chemo by quite a lot. Can they give you a time frame for when you can resume chemo after the op? I feel for you & the amount of chasing you are having to do.

I am waiting for my friend to come with the clippers. I nearly bottled it earlier, but caught a look at my reflection in a mirror this aft and my hair as it is upsets me so much, as I feel like I look like an aged man with thinning hair who has tried to cover it by spraying it in a bouffant way. I don't look like me that's for sure, so I rang my friend up and said come round now before I change my mind. I would hate to think anyone thought my current 'do' was my choice and I feel like I look ill as my hair is so thin (I normally have a thick head of hair) so am posting whilst I wait to distract myself... I have a cotton cap at the ready. Eek!

Good luck with the big chop noodles

Sorry to hear about the long waits for results and frustrations - it’s not good. Hope you all hear soon and it is as good news as possible!

Currently eating chips and drinking a chocolate milkshake at Ed’s Diner! Mm healthy!!!