Maggie's

See what's happening in the Community

You are not logged in.   Log In

Meet the team

As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

Psychologists and experts from other Maggie's Centres and partner organisations also facilitate some group and individual sessions.

Picture of Topic  'Today I am feeling' - managing emotions

Topic

Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

How should I feel

Started by Anonymous on 13 September 2013 at 09:39

I was diagnosed with CML in March and it was a frantic time with blood tests, bone marrow etc. I was put on Imatinib to which my blood did respond. I now haven't seen my consultant since June so it will have been 3 months by the time I do. The 3 visits I had were difficult for me as I was trying to come to terms with and accept that I did have a life changing illness. My family and friends have been good in that they accept I get tired and help me but I feel like no want wants to talk about the fact that I may have a shortened life. The hospital visits have always been rushed as the clinic is so busy and I feel like I am an inconvienience and that my illness is not a bad one. Maybe it isn't and I know people are worse off than me. I have thought about joining your online forum but actually feel like I would look stupid as it is not serious. I don't know who to try and talk to about my feelings as I don't want to waste peoples time or upset those around me, I just want to know what to expect and not feel like I have a common cold and should just get on and ignore it. I know this is not what people think but I feel like it is how they act with me and they are probably only trying to make me feel better. I want to know if I should live for today or plan my future and I have no one I can ask. Am I being irrational?” If you have the illness please help.

Comments (3)

latest | oldest

Displaying 3 comments

  • From Anonymous
    13 September 2013 at 17:04

    I read your post as I was logging out and couldn't go without saying Hi and also sending a vrtual hug to you.  I don't think that there is a pecking order for life changing illnesses because the only life changing illness that matters is the one you and/or someone in your family has got.  So whilst I can't offer any specific advice, I'm just a Mum of someone who has cancer, I can say that you deserve all the help you can get, deserve all the support you need and want, and most of all deserve all the love the world has to offer.  So humbly, I send you love, urge you to listen to your inner voice and do please let this community hold your hand.  Very best wishes to you and if I can help in anyway I will (I've gotten quite good at listening to someone who faces an unknown and uncertain future).  I hope you have a peaceful weekend.


  • From Anonymous
    13 September 2013 at 11:58

    Thankyou for your reply. i appreciate that you have taken the time. I have already found the site useful as I am the kind of person thats needs facts and figures and have always been in control, which I guess is why I am finding this so difficult. I have read this kind of infromation already since looking at your site and it has helped. I guess it will be easier for me when I am at least in initial remmision. Having now seen my consultant again I am having my second Bone Marrow biopsy next week and hopefully the result will at least be positive on the remmision front. I think the rarity of the complaint is difficult, I know that my consultant said that they only have 2 other cases and both are a lot older than I am. I haven't met either of them yet, maybe that should be my next step.

    I am writing down how I feel and I am going to try and explain it to my family as I also fear that I have put his life on hold too and it feels like we both have it.

    I do worry about the future and wheteher I will see my kids graduate, get married and my grandchildren. Most of the time I am positive, I just have bad days and its those days I need someone who is not emmotionaly attached to me to talk at. I guess its those days when I am feeling sorry for myself.

    I at least know that on those days I can now log on and rant about it. Thankyou


  • Picture of SusieQ
    From SusieQ  
    13 September 2013 at 10:42

    Hello….

    Living with any life changing illness can be frightening…an uncertain future makes planning difficult, and often it can be quite isolating, as people around you may not know what to say…

    Firstly, and emphatically, you are not being irrational…I think you’ve described most eloquently how difficult it is adjusting to living with a form of leukaemia which can be a chronic condition for many years. You may have long periods of remission between treatments, but you also may be living in limbo waiting for the next potential problem. It’s difficult to plan…other people have told me they don’t know whether to buy new curtains, go on holiday, change jobs…or think about whether they’ll be here to enjoy such things in a few years time….

    CML (Chronic Myeloid Leukaemia) is relatively rare; Leukaemia Care note that ‘In the UK in 2008 (England, Scotland, Wales and Northern Ireland) the number of CML patients diagnosed per year was around 620, (Cancer Research UK statistics - 2008). This figure is now thought to be nearer 750 patients/year. ‘

    This can make it difficult to meet other people with the same illness. You’ve taken the first step in reducing that isolation by writing on here. Other online members will be able to offer you support and encouragement. We also have a monthly haematology networking and support group which you make like to consider joining (for further information about our online groups follow the link here).

    If you live near any of our Maggie’s Centres, you might like to drop by and talk about how you feel…and hopefully feel relieved that you are not the only one that feels this way…and they can help you build coping strategies to learn to live with uncertainty. I also include a link to the support group page on Leukaemia care’s website, to see if there is a support group in your area.

    I’m aware that you would really like to hear from others who are living with similar forms of cancer, and I’m sure you will hear from others on here who can share their experiences. I've added a link to Healthtalkonline's interviews with people living with CML too, so you can hear how it has been for other people in a similar position,

    In the meantime, if you’d like a private word, don’t hesitate to message Robyn or myself for some one-to-one support.

    Very best wishes

    Sue


Displaying 3 comments


Registered Office: Maggie's, The Stables, Western General Hospital, Crewe Road, Edinburgh EH4 2XU   Registered Charity Number: SC024414
The Maggie Keswick Jencks Cancer Caring Centres Trust is a company limited by guarantee   Company Number: SC162451