Socialising

[Manchesterlady]

Hi , it’s just a week since my chemo. I have stayed in my house all week. When is it considered safe to mix with people . I should have had my grand daughters for tea tonight , but they have got a cold , so have put them off . Should be going to a birthday party on Saturday, but just don’t want to risk catching anything. Thanks .

[Hidden]

I think they generally say days 10-14 are when you're at your lowest ebb (chemo day is day 1).

But, you know, the longer we live with the beast, the more relaxed we get about it.

I was soooo cautious first time around I missed out on things.

Now I tend more to be guided by how I feel and, of course, avoiding obvious risks, like people with colds etc.

We mustn't let it spoil our pleasures!

[Manchesterlady in reply to Hidden]

Thanks Mac ,can’t believe I will be ever relaxed about this . I’m a nervous wreck .x

[Coldethyl]

I was told by my CNS that it was more often our own bugs that cause the problem so aside from avoiding snotty children, i went out and about a lot when I felt up to it- first cycle I was cautious but by the time I'd had two trips to A and E and been left to sit in crowded waiting area for 3 hrs plus and being given chemo by nurses laden with cold, I figured my immune system didn't need the added stress of fretting about it and missing out on living - so I would go to pub quiz and cinema and out for coffee to quieter cafes. Facing a possible recurrence, I'd say life is for living and there's not much point in enduring all the treatment and trauma if you don't get chance to live a little while on it x

[Cropcrop]

I think you just have to be sensible, if people are obviously poorly then try to avoid them if possible and people should be considerate when visiting you.

I had my chemo weekly so I would have been housebound for 18 weeks and really didn’t fancy that so I avoided big crowds where possible (although there were always lots of people at Christies so that was a chance I had to take) and everybody knew they couldn’t come to visit if they were unwell. On the whole I had no issues so it’s all down to individual situations and your judgement.

You can do this lovely ❤️Xx Jane .

[LittleSan]

The first lot of Chemo, I was extra cautious (the video they used to show at Christies was a horror film about the risks!). I got a really bad chest infection! The second time for a recurrence I relaxed and managed to to get by without any infections despite having low neuts. I feel it's about being sensible as others have said without being so constantly fearful that you don't have a life. I was always fanatical about hand washing though.

As long as no-one has a cold etc. I'd go to the party. Xx

[Tesla_7US]

manchestergal, The chemo in our bodies exits via sweat, tears, nasal discharge and our toilets! The doc told me to not share toilet or bedding with my husband for at least 10 days because chemo is toxic to my family! Also told not to kiss or have skin contact with mates for at least 10 days. As far as catching bacteria goes, you're exposed to the worst of it at hospital. All that aside, if I'm concerned about giving or getting a cold I wear a mask out in public during the nadir. I also agree with every single comment already made. There is no point to living if we are in a constant state of fear. Been battling this for 3 years now and common sense rules my days. I'm actually having a wonderful life as I continue to adapt to the "rolling target of new normal". All the best to you.

[Manchesterlady in reply to Tesla_7US]

Thank you Tesla, just waiting for common sense to kick in , as you say no point in living in constant fear , which is what I seem to be doing at the moment . All the very best to you too xx

[Tesla_7US in reply to Manchesterlady]

No worries. Constant fear is a phase! It will exhaust you to the point where you stop being afraid because it sucks up all your energy!

[BeeWild]

Hi Manchesterlady I was like you during first chemo, terrified of catching anything and getting an infection! Towards the end though I went to the supermarket, did my Xmas present shopping and round to friends houses to socialise. I just got so fed up of being isolated and in a bubble and like everyone has said we may have OC and be having treatment but we still need a life!

I’m starting chemo again on Monday weekly for 18 weeks and I won’t be silly and take unnecessary risks but I want to stay in work, keep walking the dog and seeing my grandchildren. I need some sort of normality so this disease doesn’t totally dominate my life morning noon and night x

Use alcohol gel when you’re out and avoid close contact with anyone coughing and spluttering but see your grandkids and go to the parties just be careful and most people who know you’re on chemo will avoid seeing you if they’re unwell x

It’s scary when the staff and leaflets are telling us to be ultra cautious but you can balance caution with still living and being you xx

Good luck

Bev x

[Manchesterlady]

Thanks bev . Yes , ive totally isolated myself , not good in my present state of mind .good luck with your next lot of treatment, I do hope it will be successful, this disease is total c...p. There are some very brave ladies on this site.

Sheila xx

[BeeWild in reply to Manchesterlady]

I did exactly the same Sheila and like you was isolating myself. We need all the good things in life in abundance with this disease! Laughter, family and friendships are the best way to feel better x

Just do what makes you feel ok and safe but try not to miss out on nice things happening over the summer, you’ll find a balance xx

Sending hugs x

Bev

[Lily-Anne]

I was satisfactorily neurotic about people when I had chemo. I left the house in a scarf fashionably high over my face with sun glasses clutching a bottle of antibacterial hand gel, held out in front of me like a ray gun

If someone coughed I took cover and if someone came in for a hug I ducked for cover

When I had chemo again I went on holiday. I did cover my face on the plane, wore my flight socks like a good girl and had SA park me a little to one side. But it was almost rebellious, cancer came back? How dare it! I will go to the Ball!

I’d say choose the battles. Why risk shopping when you can do so from home. See your family unless they’re really poorly. Try not to let it take over everything you do. My GP gave me some advice, eat well, take vitamin C, if the environment you’re in feels uncomfortable it’s probably wrong so leave. My oncologist said the biggest risk comes in the form of food poisoning so avoid take aways, pate, shellfish and soft cheese

Just a few things that guided me, hope it helps

LA xx

[Manchesterlady in reply to Lily-Anne]

Thank you Lily-Anne for your advice , your right , no need to shop these days , need to get out of the house though , too many dark thoughts sitting here. You are one brave lady , as are many others here . I wish you all the very best xxx

[Maxjor]

Talk about germs---I live in New York City and I was sure I would have to avoid the subway where I am mostly about 2 inches from the next face at rush hour and someone is ALWAYS coughing or sneezing. I asked and her response was I don't need to avoid it--just don't make-out with anyone! I took the subway daily throughout frontline (and second treatment) and knock on wood, have not been sick once. I did use common sense in terms of not getting together with sick people but that was rare (even at the height of treatment, I ended up spending a full day in the ER where my mother had been taken!) I was fine. ooxoxox

[CynD in reply to Maxjor]

Hi Maxjor. Just wanted to say hello since I'm in the states too - Texas. I'm originally from Los Angeles where most of my friends were New Yorkers! Ha! Anyway, I managed to get through 2 rounds of chemo with only 1 cold that I caught DURING chemo from one of the nurses. Ugh! Other than that, common sense, a little extra care, and the willingness to wear a mask to really be on the safe side and even as immuno-compromised as I was, flu-season never caught up with me! Oh how I long for those days when "The OC" meant Orange County!

I hope you are doing well!

...Cyndie

[Maxjor in reply to CynD]

So nice to say hi to you Cyndie. Can't believe you caught the cold from the nurse! MSK has the flu shot on a schedule for us "OC" ladies and so far, that's been good (but who knows with the mulit-strains out now). Funny--one of my sons went to U. of Wisconsin and ALL his friends were New Yorkers or from LA. Where are you in Texas?

Doing well and hoping for a LONG remission on the PARP. oxox Judy

[CynD in reply to Maxjor]

Hi Judy! I know, right? Six other patients got sick from that chemo nurse that day. I was livid! That's funny about your son and his New Yorker friend from LA. I'm in Austin, TX. Too hot and humid for my taste. I'm glad you're doing well! I had a really good response to chemo and surgery and tomorrow is my Dr. Appt. to begin my 2nd 3 months. But more and more I'm realizing how many women on this site had the same treatment, and the same excellent outcome as me and then found out it was back after those first 3 months. Truth be told I'm pretty much a wreck right now. I know that won't help anything, and it's sure not going to change anything but, well, i guess it is what it is. Even if the news tomorrow is good I can't help but wonder.... for how long? When will I be faced with the impossible dilemma of trying to decide if my life is worth trying to extend in the face of the toxic treatments it will take to do that? Something everyone seems to have to face eventually. These days it's all pretty excruciating.

...Cyndie

[SuziTench1]

Hiya Manchesterlady .. I like you read to much and worried about germs.. I ran a pub and you cant get more public than that so I advised my staff and regulars if they have a cold stay at least 10ft away🤣🤣🤣.Family advised not to see me if ill also avoided children first 12 days as they carry germs etc .I take B12 vitamins off the doctor and zinc they worked great and helped . Try it 😁😁.postive mental attitude always helps 🏋🏋🏋🏋🏋🏋🏋🏋🏋🏋🏋xx

[coksd]

I have a child in a creche and just finished chemo the week before he went back he got a head cold but I didn't I would use vaseline around the outside of my nose as a barrier and my mouth too and carry hand sanitiser eat lots of fruit and drink green tea for antioxidants, 10-14 days is the weakest days of your immune system and my first chemo was Dec 14 so I couldn't really avoid everyone over christmas I didn't get a cold. Take care

[ZenaJ]

I didn't even know you weren't supposed to mix with people. I carried on as soon as I was home home hospital. It shows how different the information we're given is.

I hope you're lucky enough not to get any side effects, not everyone does.

Best wishes, Zena xxx

[CynD in reply to ZenaJ]

Hi ZenaJ! It's true the info is VERY different. I'm in the states. I was told that for the 1st 48 hours I had to cover the toilet and flush twice every time I used it, and that I was MOST immuno-compromised the week BEFORE my next chemo (when I was feeling my best!) so to try and limit any possible exposure to sick people. If I had a doctor appointment at that time to make sure and wear a mask - which I did. My chemo was 3 rounds every 21 days. Other than that bit of advice I just tried to be self-aware and safe on that basis. Got through cold and flu season without a hint of trouble. Wish I could say the same for the side effects of the chemo! :-)!

I hope you are doing well!

...Cyndie

[ZenaJ in reply to CynD]

Hi Cyndie, It's as if you're talking about a completely different disease. I had chemo weekly, I caught a cold and still had chemo. I thought they would want me away from all the other chemo patients, but no. They did suggest I kept away from as many illnesses as possible. I wasn't told about peripheral neuropathy even though I repeatedly mentioned my toes feeling numb and twisted. It took a neighbour to tell me about that. It was a neighbour that told me about the toothpaste and mouth wash as well and to keep out of the sun. I found out about scar tissue damage by personal experience when I had the bowel blockage last year. It was the overcome ladies that told me about the BRCA gene. I wonder what else I don't know.

I can't say I wasn't treated really well and the staff were lovely but the information was a bit underwelming. They lost my notes twice, too. All fun.

I'm fine though thanks, I sorry you didn't get on too well with the chemo, we're all different with that one. I wish you all the very best for the future.

Zena xx

[Mptelesca]

Hi, Manchesterlady! Having tea with your grandkids sounds wonderful, and, in itself, a boost to your immune system! It kills me not to be able to go near my one year old grand daughter, Eleanor after treatment.

I am in Human Resources which makes it difficult for me to avoid germs since anyone who is sick and making the effort to prove to HR before they go home...comes in with their germy snot and shows me. Ugh! I have surrounded myself with lysol spray, hand sanitizer, vitamin C and anything else that can protect me. When out of patience for this, I gather my stuff and go home. lol. Not always an option, though.

You have a great head on your shoulders and I know you will know when it's safe to socialize. Does come in handy when you really don't feel like attending a particular party. lol.

Stay well and enjoy that tea with your grand daughters!

XOX

Marisa

[January-2016-UK]

I've read that you're much more likely to catch colds / flu from surfaces rather than from any coughs and sneezes. So wash your hands frequently or use hand gel when you're out and about. Do you remember those adverts when it was thought everyone was going to catch Mexican flu? The blue for bacteria on lift doors, handles, etc. When I think I am vulnerable I always press train doors, lift buttons etc. with my knuckle rather than my fingertip (thinking I'm far less likely to then wipe my eyes or lips with my knuckles than I am with my fingertips).

I echo what Lily-Anne says, also think about food poisoning. During your nadir be careful of unpasteurised cheeses, unhygienic-looking sandwich bars (take your own if you can), salads that look as if they've come from bags, etc.

You'll probably find it difficult to believe right now but you will become blasé about it all. We've never had any training for any of this but then, nor did we have for childcare. And we worked it out.

[Manchesterlady in reply to January-2016-UK]

Thanks for taking the time to reply , totally neurotic at the moment, all very new to me at the moment, xx

[Hidden]

I too was cautious during and after chemo. When I went out I didn’t kiss anyone hello or goodbye. I was careful not to touch my hands to my face when I was out. Thinking there are germs everywhere I made sure to wash my hands when I returned home. I am more relaxed now, it took a while. Although I still wash my hands when I arrive home. Be careful, and enjoy those special moments when you feel up for them.

[CynD]

Hi Manchester! So, I just got used to wearing a mask if I was going to venture out, which I eventually did. If people asked or engaged me in any way, I would explain to them that the mask wasn't because I was contagious to them, but to keep me from catching anything while I was immuno-compromised. I was surprised how few people seemed to care or even notice, and sometimes it seemed like people were almost MORE friendly. I think the mask and the scarf were probably a dead give away for cancer - and I have to tell you, I've never been treated so unanimously well by people since cancer. People hold doors more, they smile more, they treat you with more respect, they just seems to kinda go that extra mile for you. If you have to have cancer, you may as well get something that good in exchange, right? As far as treatment goes I found there was a rhythm to the side-effects. I was usually fine on day 1, even into day 2. Day 3 hit me like a ton of bricks and that would carry over getting increasingly worse through day 5, 6, or even 7. Week 2 was always better, and week 3 better still. By the time it was time for chemo again I was almost back to feeling like me again. My chemo was 3 rounds every 21 days (taxol carbo-platinum). I had peripheral neuropathy in both hands and feet, but worse on my right side. The first 3 obliterated my sense of taste and smell. What had always tasted good no longer did, smells that had never bothered me made me sick, and smells I used to hate seemed pleasant. For the 2nd round of 3 I noticed changes in my vision and hearing and the PN got MUCH worse. Both time I lost every single solitary hair on every part of my body, and both times it all came back. In fact my lashes came back so thick and dark it looks like I'm wearing mascara when I'm not. My hair is almost completely grey/silver now (dark brown before this), and I think it's going to be kind of curly whereas before it was mostly straight. My taste and smell returned to normal, light and sound sensitivity is mostly gone, but I still have some vision issues. I have a list of a ton of little things that came as a result of chemo and some of the things that are very typical with chemo never happened to me in the slightest. It can be tough not to get frustrated, but when I found myself feeling bad because of something I couldn't do, I would try to reframe it into something that I COULD DO that I never would've been able to do before. So, okay, I can't go out running around and being the busy girl I was, but now I can sit and read for pleasure, or watch movies without the worry of having to be at work at 8:00 a.m. or in class by 9:00. You give things up (at least temporarily), but you get other things in their place. I won't kid you, it ain't easy, and that's just the truth of it, but there is something to be gained in this journey - something that changes and opens us up in ways that maybe we hadn't been before - something good and valuable. I'm here whenever you need to reach out and keeping you in my thoughts and prayers!

...Cyndie

[Manchesterlady in reply to CynD]

Thank you for your detailed response. I have taken note of what you said . It’s sunny here in Manchester, which is not often . I managed a walk yesterday, got to get my brain in to a more normal way of thinking , if that’s possible, good luck xxxx

[ScardyCat40]

I never really worried about infection risk. I just did as many normal things as possible as and when I felt up to it