Newly Diagnosed

[chris]

Hi Claire

Commiserations on your current problems. Hope they can soon get rid of the MRSA as it needs to be well out of the way before you embark on any conditioning for the stem cell transplant. Makes one a bit nervous about the hygiene at the hospital needed re the stem cell transplant. If this had happened when your bone marrow cells were eradicated it would be disastrous. How on earth does that happen - have you had an explanation?

Presumably you were swabbed for MRSA at an early stage and found to be negative so this must have happened during your various treatments there? I hope the hospital is taking this very seriously as it can seriously compromise your health?

Hope it all resolves soon.

Best wishes

Chris

[murrayfs]

Hi - I thought Chris's comment here about links between causes of MDS was really interesting. It is truly astonishing for two people of this age who know each other to develop the same disease and it definately does make you think about factors around us. I have MDS 5q- and I used to play basketball at international level, and two of my basketball colleagues that played on the same time as me have suffered with blood related disorders. One of my friends died of Myeloma and she was only in her late 30's/early 40's. I also have another friend from the same team who was diagnosed with Leukaemia about 10 years ago, and has been able to control this with drug treatment. It definately makes you think about environmental factors, as this is spooky!

Wishing you all the best Claire - keep in touch with the forum, it's always good to have someone to talk to, and we're all in the same boat to a certain degree in terms of being diagnosed and then trying to come to terms with this crazy and unpredictable disease - I hope things go well for you. xx

[clareybabs]

hi chris, about the MRSA diagnosis, when i was initially admitted in november i was routinely swabbed - nose and groin, which came back positive, i expected it to as i work with patients everyday who have MRSA, and due to my immunity being low i have probably picked it up this way. I was given 5 days treatment of a nasal ointment and a wash, but was never re-swabbed, so i don't know whether it actually cleared up in the first place or this is a new form, as it was out of a seeping wound. your guess is as good as mine x

Hi fiona, thanks for your post, yes it is very strange that so many young people are coming down with these disorders, i think if another nurse from the same area was diagnosed with it, they would have to do some research, could be certain IV drugs we are being exposed to or something more simple, we'll never know x

[Jayne]

Hi Claire

Thank you very much for the message you sent me. You prompted me to get my MDS UK Patient Support group password sorted!! So I am back!!!

I was sorry and shocked to hear how quickly you have progressed. How on earth you functioned with a HB count of 4.0 is beyond me! You must be very determined which will stand you in good stead for the future.

I'm glad you read my blog and found it helpful.....it always gives me a lump in my throat when people say it helps. I initially did it so that Martin wouldn't have endless phone calls and updates to do, but in the end it was such a support to me as well.

Hello everyone, it will be good to catch up with you all again.

Love
Jayne

[clareybabs]

Hiya Jayne, when you got home after your transplant, how long was it before you were allowed to go out to the shops, pub, other peoples houses etc?

Been reading the do's and dont's post transplant - think i'm gonna struggle with no take aways - especially indian, not too bothered about the alcohol one. There's quite a lot of food isn't there you can't eat.

what do you think you struggled with the most during and after your transplant?

think it will be stuck in the house for me - cos hubbie and daughter will be at work, i'll have to take up a hobbie, as you can only take so much day time tele and i must of read hundreds of magazines whilst having blood x

[Jayne]

Hi Clare

I'll try to answer all of your questions, but you have to remember that we are all different, we all start from a different place and chemo affects us all differently
.
Regarding going out to the shops....I left it a few months but I would always try and go when I thought they would not be busy, I didnt always succeed and on those ocassions I used to feel very uncomfortable and worried. I always took hand gel and still do! I went to my first pub at Christmas, so 5 months post transplant and again I didn't feel totally comfortable but I'm ok now....but I still avoid crowded pubs. I think if it hadn't of been for Christmas I would have left it longer. Regarding other peoples houses, if I knew they had a clean home and understood my situation I went from about 4 months. I have only just started visiting my brothers as he has a dog (7 months). I wasnt told to do this it is just how I felt most comfortable.

I had an indian take-away at about 4 months, but this was from our local restaurant who I know cook fresh and their food always seems hot, fresh and clean if you know what I mean. They also knew my situation and cooked my curry whilst Martin waited and had a beer, they then shoved him out of the door as soon as it was ready so that I got it piping hot and did not have to re-heat it. We still do that now. I have eaten out at restaurants a few times now but only go to those that I know cook fresh and I generally have a chat with the waiter/waitress and if possible the chef to explain my baby immune system!!

Regarding what you are allowed to eat or not eat, I haven't really found it too hard. I missed having my berries, and can you imagine I missed lettuce. I have been told I can have lettuce now but perhaps only once a week and to make sure it is washed well. I usually soak it in salt water and then rinse. I have JUST started eating berries, I am still very cautious and feel happier when they are in a crumble!! and I started having muesli this week too! I still dont eat seafood or pate or soft or mouldy cheeses...it is a bit like being pregnant and I still boil my water and I do not drink bottled still water. I drink a lot of sparking water. I love smoked salmon and you are allowed this, so I mix with philadelphia and make a pate....scrumptious and feels like I'm not being denied. Focus on what you can have and not what you cant.

I was very fortunate not to struggle with anything really, either during of after. When I was in hospital I taught myself to crochet (Kids learn to Crochet) and crocheted a throw for the bottom of my nieces bed and several hats! I used to listen to the radio and crochet on a morning, and then put the tv on at 1230 for Loose Women or Lets do lunch. I would then have a snooze, then my husband would visit and then it would be tea-time! Before I knew it was watching Pointless, the news and getting ready for bed and then watching evening tv.....I managed to avoid the majority of daytime tv. I had books and my kindle but I didnt really have the concentration for reading, I had brain training on my kids DS and I also did a bit of meditating....I found this extremely useful, calming and peaceful. I would thoroughly recommend getting a meditation cd.

Once home, I initially slept a lot. I did 12-13 hours and was getting up around 11am! I have enjoyed just pottering around and being at home. It was the kids 6 weeks holiday so it was a lovely change to be home with them (I've always worked) and with kids there is always something happening. I did use to LOVE ferrying them about. I was safe in my car and it felt like freedom!!!!

I hope some of this helps and that I answered all your queries. It is best to think 6 months for most things, anything earlier is a bonus. You just have to go with the flow, try and be calm and peaceful and if there is something you are worried about try and make it a positive. I thought of my transplant as my journey to being well and what an opportunity......to be cured. In some ways we are lucky, we can get the cure . Believe in yourself and say "I can do this".

You can do this.

Jayne xxx

[clareybabs]

Hi Jayne, thanx for replying
like you said everyone's different and we all cope with situations differently. Thanx for giving me a run down on your milestones, I will take them on board and take one day at a time. I'll let U know when I get dates for going in and keep in touch once I'm in x

[clareybabs]

Hello to the women with mds - I'm a bit concerned coz I haven't had a period for about 40 days, deffo not pregnant as done test. I'm wondering if I'm going through the change as my mum was 43, or could it be the illness affecting it, with all my cells being deranged. Jan - I had a really heavy period, then 2 wks after I had a pv bleed - lasted a day, nothing since. Has anyone else experienced problems with there periods?

[janetstanford]

Hello Claire
Yes i am almost 54 in a couple of weeks and i was diagnosed in 2008 (49) i had my last period in 2007 i did have my regular period and for about the a year before that i used to bleed in between and i too thought it was an early change as 2 of my sisters went through this due to medical problems ...how silly now it seems as i told the doctor that i thought the hot flushes i used to get where the change and not cancer !?!?!?!
so i do believe that when your body is unwell all else fails as well i have aplastic anemia when first diagnosed my hb was 4 and i am blood transfusion dependent ...i do have to say that around the 2nd week of the month i do get a couple of days of cramps and my hormones go dancing

Hope this helps Janet
Can not sleep had a bi-op yesterday

[chris]

Hi Claire

I think that your doctor can do a test to check your hormone levels so you can find out if you are in the peri-menopause. Perhaps if your Mum had an early menopause, you might, too? Also, you have been very anaemic and that could affect menstruation as your body tries to keep everything in balance and your haemoglobin has been very, very low. Not to mention the stress you have been under and the illnesses since this diagnosis! It all causes imbalance. Yes, as Janet says, easy to mistake some of the symptoms (e.g. flushes and sweats) with the menopause rather than the illness itself.

If you have a stem cell transplant, this can also affect your hormones - read Jayne's Caringbridge blog and ask your transplant doctor what can be done to help you through the transition.

The joys of womanhood! Take care.

Best wishes
Chris