Recently diagnosed

Phil - you have pets. I recently lost my beloved Lab and was on a list to get a new puppy - in July. Now this diagnosis has probably put the kibosh on that right? I work from home and so miss the company of a four legged companion that I now regularly babysit some dogs who are alone at home (like me!). Should I be stopping this kind of thing? Walking is going to be so good for me. Perhaps rubber gloves with me to pick up after them when we are out?

Hi, Cee,

Steroids are used to help with anti nausea, give a 'feel good' feeling, help with appetite and prevent any possible allergic reactions to the drugs, so they have a big part in modern ABVD ( by modern I mean they weren't used as recently as 2004 when daughter had ABVD) 

Precautions? Washing hands more often than usual, plus the whole family doing the same, keeping well away anyone who wants to visit but has a cold, avoiding busy potentially virus-filled areas, shopping centres, busy supermarkets and so on, certain foods, like undercooked eggs, blue cheese, unsterilised milk and cheese, unwashed salad foods, and so on....common sense really.....but daughter actually worked each second week of her ABVD, and that was as a professional musician in a show, so could have picked up bugs from fellow artistes as well as the big audience each night! (but didn't!) 

Oddly enough, it also includes a daily shower of yourself, as if you are ever in a hospital isolation ward, they cite that as being one of the risks of infection! 

Just be sensible and try to avoid obvious problem areas.....and please don't isolate yourself, you'll want company when you are feeling a bit more yourself. One thing steroids also do is some mood alteration so you may well feel grumpier than you normally would for a day or two! 

Keep posting, keep asking, keep on coming! 

Hugs xxx

Yes, I thought as much ... thanks for confirming. I'll put that one on hold now. 

Can I ask about the timing and the yuck days? When are the NON yuck days! I thought a day or two after chemo were low days, (days 2/3) followed by a good week, but if the week after is not good, then it's time to go back for the second cycle? So doesn't sound like many good days in between! Oh dear. 

Like everything else with chemo yuck days vary with each of us! I have chemo on a Friday and usually it's Sunday evening before I start to feel yucky, although I'm pretty knackered Friday evening. I start to come out of it Wednesday or Thursday and then great after that and ready to be nuked again on the Friday, it can also drag out the further you go down the path. Phil

Cee, usually there is an entire week of feeling good with each half cycle of chemo, an entire cycle is this: you get 4 chemo drugs and the same again 2 weeks later....... then another two weeks before you start the next cycle. 

So, everyone tends to say; chemo 1b, 2a and so on, then you know exactly where they are on their planned treatment of, say 4 or 6 cycles. Not sure why two lots of chemo counts as one cycle, never questioned that, to be honest! 

Hugs xxx

Glad chemos have gone as well as they can, reading this.

So.. Quick question. One of the key indicators of HL for me was pruritis. I have a lot of itchiness in my legs now. Equally, my legs were hairless after chemo. I'm assuming the itchiness is just regrowth. Would I be right in imagining so? I'm waiting for speak to my lymph nurse but thought I'd ask here, too.

T

Wow, busy, busy thread today. Going to concentrate on Cee as I do have two boys.

We do have a much more anti bac approach at the minute, previously just used normal cleaning products as and when.

We encourage the boys to wash hands regularly and particularly when prepping food. Because of the nature of teenage boys I have taken a couple of extra precautions. I have a shelf in the fridge which has my own cheese, ham and marg on, the stuff everyone shares and could put loads of germs on, my eldest often opens fridge and grabs a slice of ham straight from the pack. I cannot guarantee that he will always remember to wash his hands first, youngest is a cheese monster and, again if he grabs the block without cleaning hands it is potentially full of bacteria!

I have my own hand towel in the bathroom and my own bath towels which I wash after 2 uses (I know some people wash their towels every time but my new approach is better than my previous sniff test lol!)

Both my boys can cook and eldest is particularly good in the kitchen, during chemo though I haven't let either of them cook, really due to the risk of cross contamination. Hubby and I hand wash regularly, are very aware of raw meat hygiene and hand wash throughout the preparation, to be honest I am not willing to put the lads under that pressure! They will get me a piece of toast or cuppa, I always remind them to wash hands first.

I guess what you do depends on your boys ages, they can be helpful in other ways if they don't get you food.

Elena, Glad your chemo went ahead, think I must be young at 41 cos chemo went ahead with neuts at 0.27 and I am often below 1, haven't had any delays yet.

My pattern for feeling yuck is (chemo on Thursday) nasty taste and queasy Friday and not able to eat many things, tired and queasy Saturday with yuck mouth, horrid Sunday then back on the up Mon and Tues. The rest of the time I am more tired than pre chemo but able to get out and about. An example is today, 5 days after chemo, I have done the washing, been to the tip, had a 1:1 yoga session, met a friend and her little one at the park and prepared tea, I am a little more tired than I would normally be at this time of the evening but it is manageable. As Phil says, it gets harder the further on you get but you will do it and there will be good days; I was still running during cycle 3 and did a 12 km bike ride the weekend after 5a, slower than before but still doable.

Tom how is the fatigue? Is your skin ok and throat?

Phil, hope you ok and having some fun before 6a, 6a!! I'll say it again 6a so close trucking to the end, can we have pics when the pups arrive please.

Mark take care standing up lovely, I sometimes get dizzy and I don't think my BP as low as yours, it sits about 90/50 which is only a little lower than what is considered normal. Can't believe how busy you've been sorting the house. Hope all goes well on Thursday.

love to everyone

Jakki xx

Yep Tom re growth, us Girls know about these things, just think you only have to put up with it once lol wait while your bikini line grows back in xxx

Evening all!

Busy busy day here; really, with the chemo its so differnt each time!; I was finding the affect was getting more/stronger, especially with fatigue, as I moved on through the infusions; yet, the past few weeks, I've had a lot more energy, and a lot more stable with it; I.E., not dropping quite so much; and, today, again only a few days since my last infusions; I thought I'd be  dead to  the world, after my final infusion; spend Friday, until gone the weekeend, just in bed, unable to barely make myself food, and having to have William here, to help me cook, and suchllike...

The past few days, though, lumping all this junk about, cleaning, tidying; today moving some more speakers, turntables, wooden units, rearring things; yes; I've lost a lot of muscle strength... but... a certain degree of determination, and bluddy mindedness, ment i did it all!; true; I'd not normally be stopping every half an hour for a break; which does rather drag the process out, but, I'm starting to wonder, so long as the radiation doesn't hit me too much, that I might be able to really push myself, and get fit quicker than i thought, now this whole thing is nearly over for me... - was so convinced I'd be a train wreck by the end, but, days like today... - yes I'll suddenly fade this evening most likely, but, well, I have been busy!; must try for an early night tonight though; people coming to collect all the computer junk in the morning, and I'll need to help them move the stuff out; big CRT monitor, I think two or three PC towers, and a massive box, of sundry things (OK I think I'll have to let them deal with the big box, maybe also the CRT monitor)...  - don't want to wear myself out too much tomorrow morning, anyhow; hoping to go for tea with William's daughter, midday, and then maybe even treck back to where we saw the new bed, and hand over the credit card...

I was feeling pretty light headed, and getting towards  fainting  teotority a few times, I think, today, doing all this stuff, - utter bluddy mindedness at the end, as I mopped the final bit of floor; "I'm not going to faint.... I@m going to finish the mopping now!"; seemed to work... - I did kinda collapse afterwards into the sofa, with a cup of tea and a choc bar! - and now at last I must go find food, for dinner.

With the hygine, and steralisation, - do as much as you can, its very easy to pick up an infection; I've had several (of course, no idea from where I got them); I got at least one, from my eye (touch a doorhandle..... randomly scratch your eye... infection!).

not sure if any of hte other ones I had entered through food or not, - I was very uncautious to start with, when I started chemo, as I didn't really know about avoiding certain foods etc - now I'm a bit more sensible; not quite the 'clean diet', but something approximating it, I think; even though strickly speaking I've only been  neutropenic I think maybe once; but, trust me; you wanna try avoid the infections!; not nice at all ; espeically the over night stay I got a few weeks back...

I clean, then steralise kitchen worktops, doorhandles, drawer handles, etc, every time before I cook, then again afterwards. I wash hands between touching all differnt food types, and if necessary re-steralise the worktops etc., during cooking; I.E. you realise there might be some say raw meat having touched the worktop, or you've touched the raw meat, and then accidentially touched a drawer handle, etc...  - get alcohol gel, as well as hand wash, as your hands will get so terrible!; I've a mixture now; each sink/basin has hand wash, alcohol gel, and the Putty for your hands, from Lush, and I use a mixture, plus moisturise my hands, several times during the day; they get so sore at times, they sting when I wash them, or get alcohol gel on them;

Mind, I messed m y hands up big time; the first week after my first infusion; be awaare of chemicals that may affect you more than they normallyl do; I found my hands reacted to  bleech; normally bleech is fine on my hands, but it reacted with one of the chemo drugs, and I had terrible chemical burns on my  hands; luckily now all healed, but, probably ment my hands got so  super dry  abd nessed up back then,m they're still not quite fully recovered; I tend to use buckets of aquaious solution, during the day, and then some better stuff at night, or when I'm about to go out, so at least my hands don't look quite so terrible; they  almost look scaely at times! yuk!

Tom; yeh, regrowing leg hair can be itchy, sometimes; just moisturise!

Hope everyones OK.... this thread seems to have been busy, I've probably not read everyones message, sorry!