Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

No, I used to get a horrid metallic taste in my mouth after chemo for my primary cancer.

@catmomof3
I had chemo every three weeks and was wiped out for 10 days after each cycle. If you're tired then sleep if you can. Keep on top of nausea with any anti nausea meds they've given you and take them straightaway as soon as you feel ill. I used to take mine as soon as I got up in the morning and top up as needed. If you get diarrhoea then let the chemo unit know when you've had 3 episodes and they will probably tell you to start Immodium Instants. Immodium was my very best friend during chemo! If you feel odd or unwell then contact the chemo unit - they should have a 24/7 service for emergencies.
Most importantly, be kind to yourself. Don't worry about doing stuff that can wait. If you only want to lay on the sofa and watch tv then do that.

@MothralovesGojira I've been taking my anti nausea and resting, did pop to my brothers who shaved my hair and came home and had some lunch. Now I'm just taking it easy. Gonna have a nice bubble bath now and relax.

@Enigma52 Maybe what I'm tasting is metallic idk but it kinda tastes a bit fruity lol then again I do have sensory issues with taste 🤔

@catmomof3 could be the chemo. Gives you an excuse to eat some nice food! Relax now, you've done good today!

@Enigma52
This is the first GP I've seen who's taking it seriously so I'm hopeful that I will find out what it is and what the hell is going on.
I will be so gutted if I have to miss the first festival of the year. I'm going to Slam Dunk followed by Download, Foo's, Placebo and Kaiser Chiefs in June. I just love live music!

No, I haven't managed to complete DC's PIP form yet. DC has many conditions and it's really tricky to explain how each impacts them on each question. I'm going to have to ring PIP on Monday and ask for an extension as DC's doing A-level exams too and it's a bit much for them.

I hope that everyone has been able to enjoy the sunshine today!

@catmomof3
Yep - chemo does weird things to you. I think that I used to suck Haribo jelly babies and chew minty gum for the strange tastes and dry mouth.
Anyway, glad to see you're all good so far xx

Good job getting chemo #1 behind you, @catmomof3 ! I had some sort of foul taste in my mouth during chemo as well. Not metallic, but yucky. I found that very salty or very citrusy food cut through okay. Also drank gallons of cranberry juice as I couldn't stomach water, and the nurse suggested that cranberry juice would help prevent bladder issues.

@Daisy03 Welcome to the best thread on Mumsnet. Just try to get through these next few weeks best you can. The fact that you have a surgery date does suggest that they expect the liver thing to be an incidental, non-cancery thing. Sometimes scans show lots of random stuff, but Knowledge Is Power. So the more tests they do, the better.

@Whatevershallidowithmylife Bloody kidneys. Did this show up in bloods, or do you have any symptoms?

I'm just procrastinating over here. Should be packing for yet another business trip, but I don't leave until lunchtime tomorrow, so I have plenty of time... DH and DS are watching Eurovision. The cat is asleep in my lap.
I did a Good Thing this week. Started work with our disability community group at work to educate them on cancer & work, the need for better sick leave policies, etc etc. It went well, until the group leader described cancer as a "temporary disability". I then lectured them on The Aftermath for a good five minutes. I think they might have learnt something.... 😂

@Enigma52 I don't want to scare you but please get your tooth looked at asap. Ribociclib increases the risk of osteonecrosis of the jaw so you need to get it checked out and ruled out urgently x

@SewingBees Thanks for the heads up on that. Said tooth has calmed, but I do have a dental appointment on Thursday.

How are you getting on?

@Enigma52 I'm doing ok thanks. I seem to be tolerating the Ribociclib fairly well but I do get quite fatigued by the end of the 3 week cycle. Still unsure whether it's working properly because my latest scan wasn't compared to the one immediately preceding it, but to a scan taken before I had radiotherapy. Now waiting for the results of the proper comparison. I do know that the cancer hasn't popped up anywhere else, just not sure if it has done anything to stop or reduce the spinal mets.

Spent all day in bed exhausted hoping I'll perk up a bit tomorrow. I didn't think a low dose of chemo would exhaust me this much tbh. Plus I'm already panicking about going back next Friday, part of me doesn't know how I'm gonna get through it. I think I'm just feeling sorry for myself today. Also worried about going out tomorrow to the shop with a shaved head and having people who know me ask questions.

Chemo is exhausting.
Rest when you can and do the absolute minimum at home if possible.
Re your shaved head, have you got a pretty scarf you can wear until you get some chemo scarves or a wig if you prefer?
I have just finished chemo for now and I wore scarves to begin with but changed to the wig supplied by the NHS as I found it more comfortable.
Chin up.
You've got this! Xx

@KentishMama @Enigma52
Yes showed up in bloods - no other symptoms. I’ve to get bloods done again tomorrow and a scan next week sometime.
Spent all day today dress shopping and found the one I like best but out of stock everywhere so ordered a size up in petite and fingers crossed! Came home from town and slept 3 hours 😀

@Zoopet I do have some hats but it's my anxiety that just makes it difficult. I guess I have to suck it up and pop to the shop later but I am dreading people staring.

Ive woke up with two painful lumps rig at the top of my thighs on my knicker line. They are blooming painful when I sit diwn. Surely they wouldve shown on my PET scan if they were cancer? Id it because I had my covid jab on Friday? Another thing to worry about🙁

Let them stare @catmomof3
They will soon get bored!

I can remember when I was going through chemo for my primary. I had two wigs; one shoulder length and one chin length. I did the AM run in the short wig and the PM run in the longer wig. My how people were confused! These days, people wear a range of accessories on their head. You will be fine 🙂.

@EachandEveryone I would imagine anything untoward would show us on a scan. Have a they just appeared over night? Keep an eye and maybe ring your surgery if they worsen? Wonder what they could be? Are they red/ swollen/ itchy?

@Whatevershallidowithmylife So glad you had fun dress shopping, not king to go now! Still feeling calm?

@SewingBees Yes, I was quite ill at the end of cycle 4. Low Haemoglobin/ dizzy, just yuk. Hoping and praying cycle 5 will be better.

I do hope ribo is working for your spine mets. When will you get the results of the proper comparison?

The first few times I went out in my head scarf I felt really uncomfortable and self conscious. But I swear noone else pays any attention. And now I have a rapidly growing collection of really bright attention grabbing ones that I love

@catmomof3

To be honest once you've got your beanie on and a mask (don't forget to wear one!) people won't generally recognise you. I was used to giving a well practiced 'Paddington' hard stare at rude people who stare as youngest DC is a T1 diabetic so people would stare when I was injecting them outside the house.
Having said that I really hated going outside and seeing 'people' so rarely went out. My neighbours were lovely as were most others and mainly people just asked how I was doing and I'd reply that I was doing my best and that was it. I perfected the quick wave and a quicker move on with a "Great thanks" quite quickly.
All of us here understand the anxiety of the approaching next chemo session and really there's not a lot to be done apart from enduring it. From what I remember you are on a straight 15 week treatment plan? Have you thought of doing a 15 week countdown on your calendar so that you can see yourself getting closer to 1 every Monday - that may help mentally & with morale? This really is a journey of endurance like climbing Everest with starting in the valley, getting to base camp, gaining a camp on each treatment until you reach the pinnacle and then you get helicoptered off at the end back down to the valley for some R+R. You could ask for something mild to calm you the day before if your anxiety is really going through the roof.

@EachandEveryone I have these both sides and spreading upwards but mine aren't sore. You might have abscesses which need antibiotics straight away before they need drained - phone oncology basically as that will be the quickest way to get seen.
@Enigma52 yep, still calm, but my sister is freaking out I'm so calm!
@catmomof3 you got this, get out for change of scenery and fresh air. So e people might look but never had anyone stare, after all would you stare?

Hi all, hope everyone is feeling well today. I was on the last thread but haven't been on this one yet. Hoping to vent some anxiety. I finished 6 weeks of radiotherapy for a brain tumour. Felt ok throughout the course but then a bit crap the week after, it really exacerbated some visual disturbances caused by surgery making me dizzy especially.

Like an idiot, I left it too late to catch my radiographer on Friday for some steroids so was directed through oncology triage who were great.

I felt much better quickly and had a nice weekend but the ANP has just called and my oncologist wants me to go for a scan (they haven't said when so I don't think as an emergency). Bloods were fine. I'm now horribly anxious. I only went through triage as I rang too late and it was a weekend, I don't know if going through my radiographer would have triggered this. I know if there's anything there it's better to know than not but I thought I had a bit of time until the next one and that this was just in line with radio side effects.

To add, I lost a bit of vision with surgery and have had visual disturbances in that area since. A neurological exam is the first time during the triage will be the first time it's actually been recorded that I'm missing a chunk of vision so I wonder if that's anything to do with it

Hey @Catunderling, I think their protocol dictates that they should check for radiotherapy induced swelling or necrosis with the symptoms you've had. However, both very treatable with our old friend, steroids. So try to embrace the scan as it'll just give them more info to work with to give you better treatments for the side effects. Knowledge is power, remember?
I think that is quite normal for side effects to peak 2-3 weeks after rads though! Hopefully this was the worst of it, and now you will start to feel better bit by bit.