I’ve been trying to find out about vitamins & supplements too, for ages. Popped into maggies centre to speak to a nurse about this today but she said I need to ask my team. The very few times I’ve spoken to my oncologist I seem to have forgotten to ask the question. I’ve got collagen supplements, echinacea and probiotics i want to take
Oh my good god, you’re going through it too. I winced when I read about the spade. Do you need someone to check it out for infection or anything?
Is the cream working or does it take time?
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Oh ffs what is wrong with these people, I am so angry for you. And also everything is “really simple” but it’s fucking not is it!
I’d be loudly screaming if I were you.
Also, I was told when I agreed to get a PICC that there would be 2 nurses doing the procedure - there was 1 and I queried it & she told me they were short staffed. It sounds like there was just one there for you too? I am so annoyed and angry for you honestly.
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I feel like some people may just not be suited for PICC lines! (Myself included). My arm still feels awful, they’ve put a “honeycomb dressing” on which gives it a bit more breathing space & I can’t see it but my mind is wandering as to what I will see under there next time the drsssing is changed 
Bloody hell! It doesn’t rain it pours. Have they asked you to go back so they can check? I’m not surprised you’re blue and weepy have a good cry.
People will help if they can don’t worry about asking if they can’t help they’ll say they can’t. X
@sunshineandunicorns I have only seen my oncologist once and no idea how to get in contact with them. You think there would be a leaflet or guide of what to take or not to take etc. I’ve heard so many contradicting info on what we can eat etc too. Some say you can have probiotic foods some not. Some say can’t have painkillers - well im in too much pain so sod that . There should be general diet and supplement info available for all treatments . I wasn’t given anything apart from a consent form
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Volunteer reflexologists come in to do foot massages while you’re being dosed and it was my turn this week. She saw it and massaged an extra lot of oil into it. I presume it will fall off at some point but it’s still attached for now.
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I’ve only seen my oncologist once. She’s based in a hospital 30 miles away and only visits my hospital 2 days a week. But there’s a very good Senior Oncology Nurse who seems to do her job when she’s not there.
It sounds horrendous. Did they give you a choice of cannula or PICC or is their some medical reason for the PICC?
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So sorry about your PICC nightmare @luckyduck1 and transport issues dont help. I already hate my PICC line…just another thing that doesnt make me feel human. And sorry about your toe @magl. Seems all these poisons come with tgeir joys!
I absolutely love about a ton of parmesan on my pasta and have just discovered i shouldnt be eating it as its made with raw milk… WTF! Good job I’m mainly craving sweet stuff but not sure dolly mixtures are a great diet! I have been using paracetamol and ibuprofen when needed. I did check at first EC dose re headaches etc and both types okayed by chemo nurses.
@magl its way back in the comments but round 1 was cannula and it leaked. I was sent to another hospital miles away for a flush out of my skin / tissues. Horrible procedure. Then they tried a picc line as needed to finish 1st interrupted round and my veins kept blowing. Small and fragile so was booked in to have a port put in and he tried one more time for picc first under x ray and got it in. Round 1 and 2 done through this picc but twatty nurse pulled it out after changing dressing after round 2 on monday which is why i was back today to have it replaced. Im just so super anxious about it now. 
not my usual positive self.
@sunshineandunicorns
She had someone assisting her. I was given paperwork with all the info this time too. Someone else mentioned that. I didnt get it because it was done by x ray dept in the main hospital 
I’m just a bit burnt out with it all today.
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I asked today about bio yoghurt and she said not recommended as its a live culture and therefore an infection risk. Its basically the pregnancy diet to follow. No unpasteurised cheese, cured meat, pate, raw fish or meat so smoked salmon. Fully cook eggs etc i think i read houmous not good either
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I’m not sure who it was who posted about not being able to be given pegfilgastrim - a few of us I think (@sez i think was one?) but due to now having to have blood thinner injections every single day for the foreseeable then the filgastrim for 7 x days every cycle I’ve just practically begged my chemo nurse on the phone for pegfilgastrim & said I can’t handle 2 x injections a night! To which she’s now said that they are going to try to get me on oral blood thinners after 4 x weeks. Which is good news at least for me but they really really don’t want to give out the pegfilfastrim do they! I even asked at the pharmacy at my hospital today & found out they do have it there! So not sure what you need to do to get it!!!
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My oncologist told me (re pegfilgrastrim) she would have to beg the board, that it’d require lots of paperwork and that they would be unlikely to consider it if I hadn’t trued anything else first. I told them it wasn’t even so much about the pain but psychologically I struggle administering something via injection knowing it may cause me pain (feels like self harming) and was told instead if addressing that issue they would rather I focus in eliminating the potential pain instead. I felt very unlistened to and dismissed and that it was all about money and them trying to avoid paperwork rather than focusing on me and my treatment needs.
I can’t imagine having to adminster a second injection a day, I struggle so much mentally just doing one (have to really psych myself up to do it), I empathise, that must be so crap.
I think the only way you get it is if your trust isn’t cheap.
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I can’t believe the torment you are going through with your picc lines sunshineandunicorns and luckyduck! I’m so sad for you both, it’s just extra bollocks you don’t need right now. And then magl with her toe…we need some good news!
Which I can’t provide…tomorrow’s treatment has been cancelled as my liver blood test was too high. Liver issues after only two treatments??? Much as I don’t want to have the red poison I’m actually gutted at the delay. Really gutted 
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Hey all, anyone getting chemo cystitis to add to the list of side effects?
Went to my unit yesterday due to 
when peeing no infection and treated me for thrush instead! But the wow!! I am upping my water intake again but any other suggestions welcome xx
I read chemo cystitis is a thing! X
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I’m having organic kefir every day and that’s live. I think my guts would go into shock if I suddenly stopped having it. And I’ve started having a forbidden glass of wine with my supper. I can see as the weeks and months roll on I’m going to get sloppier and sloppier with the rules and regulations.
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I was also told this but I’d already been eating it and Actimel and the nurse said and how have you been and I said OK and she said well carry on then 
so I am.
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Aww this made me laugh! There’s so many do this don’t do that, memory is shite so I’m sticking with what I’ve always done. I’m also taking kefir water and I’m not stopping either. I didn’t have any of these things the first week and I was awful, the second two weeks back on it all and felt much more normal!
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