just seen specialist and have been put on watch and wait

 SLL/CLL diagnosis confirmed yesterday and put on watch and wait . I am all over the place emotionally sometimes fine but sometimes I  feel in a very low place can anyone advise me on how to cope with this condition .

  • hi Janet,   

    welcome to the online community

    wow, mammogram then this, that's a shocker

    how did they go about finding that out ?

    I had a biopsy before my breast cancer diagnosis and it said that lymphoma couldn't be ruled out, my GP dismissed my fears

    It played on my mind when discussing my chemo options but my onco was much more in favour of looking after my immediate future than worrying about something that I might never get to face, that was a fairly grounding experience.

    I've no idea if you know this but the very earliest signs of breast cancer is where there are changes to cells and that's called DCIS and the current thinking is to watch and wait for that.

    I'm not from this group, so I'm not entirely sure about self help for SLL or CLL, other than diet and exercise, or eat less move more.

    I walk around the park and up and down the cemetery hill, I did try and do it 5 days out of 7 but slacked badly during September, October and November, but got myself back on track this last week and feel a lot better.

    do you run half marathons or anything similar ?

    chin up

    hugs

    Carolyn

    xx

     real life success stories to remind you that people do survive breast cancer

    https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

    Dr Peter Harvey

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

     

  • Hi Janet

    I have NH Lymphoma and have been on watch and wait for just over a year now. 

    I join the CLL group as my brother in law has it and it seems to be grouped together with Lymphoma. He has just started treatment after being on watch and wait for a couple of years, I suspect he is somewhat older than you.

    For my part I know how strange it is to be told you have a cancer yet they are not treating you. This seems to go against everything you read or hear about catching it early.

    My consultants have been very clear with me that as it is a slow growing cancer which in my case is treatable but not curable, they will not start treating until it is giving symptoms. It makes no difference apparently if you are treated now or at a later stage.

    I am quite happy to be on watch and wait as at this time am well and I am trying to make the most of being well, but it is always at the back of my mind, especially when making plans which I don't have the confidence to do so much in advance. I do worry about the future as I will most likely be on my own when the time comes to treat. But there is little I can do about when and if and am determined not to let it get to me and hopefully deal with it when the time comes. I would rather hold out without treatment as long as I can in the hope that better treatments become available.

    Get as much information about your own position, it seems to affect us all differently, talk to the helpline here and do gave a look at the 

    Lymphoma.org site you will find CLL there as well,they also have helplines.

    There are many people on these sites who are on watch and wait some excepting it others not. We are all different.

    All the best to you.

    Ann

  • thank you for responding everything is so new at the moment I am determined to carry on, I will be glad to be back at work on Wednesday . So my routine will be back to normal  x take care Janet  

    Janet

  • FormerMember
    FormerMember

    Hi
    Lots of help on here.
    I had a recent CLL diagnosis. When I saw the consultant it was a case of 'it won't kill you', go and live your life!!
    There is a lot you can do to help yourself.
    Firstly a good diet. I am breaking that bit of advice because I am a veggie! But I eat enough enough and have taken advice taking a range of vitamin tablets daily.
    Don't let your mind (or other people!) worry you. I am 65 and nothing really has changed in my daily routines!
    Best wishes

  • Thank you Michael It's great to hear from you , I have been feeling so confused  there is so much information to digest and the diagnosis came out of the blue .  I will come to terms with it and with the support of this group and people like yourself

    Happy New Year

    Janet .

    Janet

  • FormerMember
    FormerMember

    Hi Janet 

    Try not to worry , it is alot to take in at first. Live your life to the full , just try to be healthy and take care of your diet / sleep  etc . 
    I was diagnosed 8 years ago (aged 38) and have been very well thankfully. Counts are climbing now but hoping once I have the chemo that it will zap it! Am hoping for a ten year remission (might as well be optimistic ) 
    You never forget that you have this disease lurking but I don't want it to rule my life.. I have too much I still want to do, so going to fight it as much as I can! Any questions I can help you with I will try my best ! I hope 2017 is a good year for us all ! 
    Teresa
  • Hi Teresa I am feeling all over the place tonight I know its early days so I should expect it . Now I am worrying about  our cat will I have to give him up  . Thank you for responding  .

    Janet

  • So Much courage to everyone  with your letter :)   I try to follow you.

    Happy New Year ...

    Charles

  • FormerMember
    FormerMember in reply to boa1959

    Hi Janet

    Have a look at the CLL support pages on the HealthUnlocked website. It has a large community and is a great site to ask questions. 

    Many of us, when diagnosed, are completely unaware that we had CLL and suddenly go into a frenzy of web searching. While this may educate you for the future, the fact remains that, while on watch and wait, what didnt make you sick yesterday will continue not to do so for quite a while and most strange aches and pains are more likely due to life rather than CLL.

    I am still on watch and wait and have been for almost 10 years. I also lost my spleen in a road accident two years ago but changes to my lifestyle have been relatively few. 

    I have always made sure that I have the annual flu jab and also got vaccinated against pneumonia...both the child vaccine and then the adult vaccine. I also had a few additional vaccines that were linked more to losing a spleen. I do try avoid sick people whenever possible.....esspecially during flu season.

    For diet, i have stayed clear of some of the popular fads (eg green tea). I eat a healthy diet, take one multivitamin a day and exersize regularly. 

    One change I have noticed is an increased sensitivity to insect bites. Mosquitos are the worst. However, regular applications of jungle strength repellant during the summer certainly helps. 

    And as for the hairy critters.....I still have a large slobbery dog and a cat.

    Mike

  • FormerMember
    FormerMember in reply to boa1959

    Hi boa 1959

    I was in a similar place to start with over 2 years ago. I still am at times and I guess that won't ever leave us. I have anxiety disorder too and that makes life interesting as I have an over active imagination.  However, I read posts that show people in w and w for years and that heartens me, those that have been treated have their stories and have come out the other end.  This is all positive stuff and I try to remember it when I get an attack of the wobbles.
    I can't imagine why you should need to give up your cat unless you gave a reason to do so. I have 2 big dogs and asked my consultant whether they pose any risk and was told they're more likely to be good for me. 
    If you were poorly enough to look to the future, you would know about it and be having treatment discussions. Enjoy life and your cat.
    Very best wishes