I am approaching my 3rd FEC chemo. I don’t know if I am paranoid or not but having been told to try and avoid infections especially during the second week after chemo I am unsure how far to go with this. I meet friends as long as they don’t have colds etc and go into town for a mooch around or shopping. However, I have avoided going into crowded places such as cinemas, or theatres. Also I would love to go to playgroups with my daughter and her baby but once again scared of infection. Am I just a scardy cat, or being sensible? I fould love to go to see a film or go to a meeting. By the way I have made a decision to rejoin my Tai Chi class that I have been going to for the past 7 years. I won’t be able to do the sometimes strenuous Chi kung but the form is nice a smooth and I will enjoy this. Have gone mad at knitting - is this a side effect of chemo?? (joke)
I personally have not been that lucky when it comes to infections and staying out of hospital. When your white blood count is low (usually after end of first week onwards) it’s important to keep away from crowded areas and especially children’s playgroups. Other than that though I managed to keep going to the gym and doing other things such as going to cinema in the afternoon when it was less crowded and going to shopping centres. All my friends knew not to spend time with me if they had anything. Having said that, all the infections I had were from an infected portacath and more recently a kidney infection so none were caught from other people. I think that a lot of people are just fine and don’t pick things up during chemotherapy. Although I finished chemo at end of October, I still suffer from a low white blood count and hence have to be very careful like when I was on chemotherapy.
Hi Judka,
I had chemo last july-dec, i was on the tact2 trial so had 4 epirubicins followed by xeloda. I was told my most vulnerable time was indeed from about day 10 - 14 after the epi. My white cells always stayed within normal limits & i carried on seeing my friends, godchildren & doing town for lunching & coffees. I would have gone mad otherwise i think. I like knitting but not for 12 weeks solid with little other entertainment!!! I didn’t pick up any infections, i had a mild cold when i was on xeloda but it didn’t develop into much and the chemo nurses said not to worry as long as i didn’t get a temp. They said they don’t worry about colds generally. They were great & if you have any worries just phone them for instant advice. As ruby says my friends knew to avoid me if they had bugs of any sort. I think you need to be sensible but not go overboard as its such a boost to your fragile emotions to be able do nice things with friends. Hope it continues well for you. Take care,
Best wishes Rivergirl.
I have had loads of chemo sessions and have never particularly bothered about risk of infection. If I am well enough to do things then I do them…travel on London tube, trains, cinema etc.
Yes I do avoid individual friends if they have flu or a bad cold or something, but can’t avoid my partner and she has had colds while I’ve been on chemo and its not affected me.
I am getting progressively tireder on chemo and when I’m exhausted then I can’t go out any way but when I’m feeling reasonable I go for it…
I’ve been pretty lucky in never getting a major infection
I am in the same position as you, Judy, am terrfiied of infections. I carry a small antibacterial hand gel thing around with me and use it after the loo when out ie wash my hands as normal then once back out in the caff I use the gel, also use the gel before eating anything out. Make sure I wear gloves on buses (those handrails!) too. I have just had chemo 3 and my OH has had a hideous virus for the last few days. I am totally avoiding him! having said all that, I think you should do things you want to do, I do a lot of lunches out and stuff and if I go to a film, I sit in the side section so I am not squashed in. When I work (week 3) I go on trains that aren’t too crowded (not possible in London, Jane RA!)
I had two 6-night stays in hospital last August due to infection and needed IV antibiotics to sort me out.
I was told that it is more than likely to be yourself who infects yourself, if you see what I mean, rather than other people with their sneezes and coughs etc.
We are covered in millions of bacteria, both internally and externally, and in normal circumstances would be able to defend ourselves from infection, but when the white blood cell count drops as it does usually 7-10 days after chemo, we cannot.
I did my best by taking my own hand towel to work, and dried my mug/glass with kitchen roll or my own teatowel, and even washing my hands before going to the toilet, let alone afterwards, but still I became a victim to infection. And of course I had to avoid my beloved unpasteurised runny French cheeses!
But if at ANY time feel you have a fever, i.e. nudging 38 degrees, then it is well worth ringing the hospital/chemo unit/wherever for advice, even if it is 3 in the morning. As I said on another posting yesterday, I got a real rap on the knuckles for leaving it until 9 in the morning because when your body has no defence again bacteria, you can go downhill very quickly indeed.
I have just finished last of 4xFec and 4xTax and have been lucky enough not to have any infections or even a cough or cold throughout my treatment. At first I was very paranoid about crowded places and children with runny noses! but after first two chemos couldn’t bear it any longer and like Jane, if I felt okay I did what I would normally do. I did however buy one of those First Defence nasal sprays and used it if I was travelling on busy bus, going to watch kids in school play etc. I also took a multivitamin with immune booster stuff and a spoonful of Manuka honey every day - who knows if it helps but it made me feel better mentally and stopped me worrying too much!
Good luck with the rest of your treatment, I hope you have a trouble free course,
Love Louisa xxx
PS Good for you carrying on with your Tai Chi, I have managed to carry on with riding lessons throughout my treatment, it’s given me something else to focus on, even on days when I’ve felt really worn out it’s been good to have to get out and do something else (apart from today when my instructor was shouting at me for being nervous whilst the horse I was riding was trying to buck me off!! - days like this I wish I’d stayed in and watched telly!!!) Lx
A big thank you for everyone who responded to my post and for your good advice - I guess I was a bit over cautious! The general feeling seems to be go ahead, do stuff I normally do but stay away from infectious friends etc. I will go to the cinema as I miss it but maybe in my third week when feeling good.
Louisa if you can jog about on a horse, then I can definitely do some gentle stretches in Tail Chi - and I won’t get shouted at!
Hi ladies, yes infection is a worry. i am coming up to my 7-10 day oeriod after my first epi. My sister is supposed to be visiting next Friday but has said that at the monment has a heavy cold and will not go near me if she still has it. How long are others infectious? It will be a bout a week after she showed symptoms of her illness. i do not know how fussy to be.
Rach
I’ve had one chemo session so far and have been really careful about going out in crowds and keeping away from poorly people. Also I’m not allowed to go to work as am a teacher, and there are too many infections to catch. Nevertheless I started a fever on Sunday and luckily rang the hospital and got antibiotics yesterday, otherwise consultant said I would have been admitted today. Scary stuff init.
Do you have any tips about finding a good tai chi teacher. I’ve been wanting to take it up for years but haven’t got a clue how to tell if a teachers good.
Fingers crossed that I develop no symptoms tonight. I do have the 10 day bloods tomorrow so will be at doc anyway and I have no symtoms or open wounds so I decided to go for it tonight. If I had lots of ulcers of something I wouldn’t have done it… probably
I’ve only had the first session - 2nd due friday - but I didn’t think about immune system - although think I shoould probably be more careful. Felt so good in last week - went back to doing the horses in mornings mucking out etc. All good exercise and made me feel good - until looking for a good place to burn some rubbish… found a flat piece of ground by the muck heap…Not …so good …wasnt solid…lets say i found out what it might be like to step on quick sand!!! up to my knees in smelly wet manure!!! - only then did i think oh no immune system (comments were prob more explicit than that)…managed to get out with boots still on (now in bin)…got to horse wash hosed myself down fully clothed with cold water… anyway must have good immune system cos been right as rain… Just thought best not tell onc what ive been up to and will try to be more careful from now on…I was then told by youngest that dad doesnt burn the rubbish there…! Um neither will i now!!!
I will say foing out I prefer if its not crowded - but note sure thats a ‘immune system’ reaction more I just dont like larege crowds & too much noise at the moment.
But I would def say - go for the thai chi - i used to do it and i think its an amazing form of relaxation & exercise.
Im hoping to get back on my horse soon - but will say after Mast - think I may be lopsided when riding (lol) but am more concerned of falling off… may have a few lessons first on riding school horse get me back into swing of things. really miss it.
Leesha
Life must go on I say, it’s hard enough without getting too worried… do check out the first defence foam if you want to pull any stunts like I just did.