Trying to be cool

FormerMember
FormerMember
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But you all know how it goes...

So far I've been so lucky - no hospitalizations at all since my transplant almost 2 years ago. I have a regular follow up appointment with my oncologist next week, so i could just wait... but...

Little red patches have popped up on my arms and legs. I suppose its the GVHD rearing its head again but part of me thinks about leukemia again, baterial infections, etc. I may never get a good night's sleep again!

Anyone have some rational thoughts for me?

  • Hi Alissa,

    I would say 99 out of 100 things that can go wrong with the body are nothing to worry about and are easily fixable. The problem we have as cancer patients is that we’ve had the 1 thing and so now we don’t trust our bodies when the other 99 things come along. If it was me, if it is anything that is similar to a symptom when you were first diagnosed, then I would be straight onto your medical team. If it is something new, I would leave it for a few days and see what happens.

    My skin GvHD was so quick and so obvious (it was all over the trunk of my body) that I would recognize that in a heartbeat and do the necessary. I’ve never really suffered with skin problems other than that, although over the past 6 months or so where I’ve had two rashes on both legs. Three lots of increasingly strong steroid cream have not got rid of them, the dermatologist has said it is annular erythema. Once, I would have obsessed over it to the extent of making myself poorly with worry, but I am trying to file these things under 1 of the 99 until something tells me otherwise. It works for me as it helps me to forget about it. The rashes are now beginning to fade so I guess it is 1 of the 99. One day, my luck will run out and it will be something bad, but I think making the assumption that it is 1 of the 99 has helped me to build trust again and get on with life without over self-analyzing.

    Of course, if it is something that is bothering you though, you should definitely get it checked out by the medical teams. Reassurance from someone else is often very helpful as you are building the trust back up in yourself.

    Here’s hoping it’s 1 of the 99 and you can get it fixed really easily.

    Greg

  • Hi Alissa, I do like Greg’s 1 of the 99 and can relate to it in so many ways.

    It’s easy for me to say it gets less stressful as time goes on....... but as we all know any small health issue starts that “what if?” helter-skelter.

    I am better at controlling these incidents now but I am 3 years 315 days post my second Allo SCT.

    That life changing event is engraved in my mind and with that comes the joy that I have been able to get so far but every now and then...... especially when I get a bug or some lumps, bums and skin issues (I had skin Lymphoma) the mind overrides that “it’s all ok - stay cool” mindset and I can become irrational.

    I am pleased to say that these moments are becoming less now..... and more so after I was discharged from my team. I know that some folks may never be discharged but my team are convinced that removing the up coming clinic stress and the thought that they think I am doing ‘that’ good helps folks move on.

    I have had my fair share of health issues and hospital admissions but I have eventually rationalised these into a box that says ‘I now live with a defective immune system - not cancer’ and this has worked for me.

    I still go see my General Practitioner when something new comes along and I would always advise others do the same........ and the more you over come these “what if?” milestones the more confidence you develop in your body.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to greg777

    Thanks Greg and Mike, for the rational thoughts! I like thinking I have a defective immune system but not cancer. I know that is totally what's going on. I'm having serious stress at work and that probably does not help matters.

  • ((hugs)) Alissa.

    Stress is not good and not a great bedfellow following SCT.

    I took early retirement from teaching in 2011 as I was finding the pace of changes in the education system was stressing me and having a negative effect on my Skin Lymphoma......... then within 2 years everything kicked off........stress city!!

    But once all the post SCT dust had settled I developed a rhythm that helps to keep this living thing on a more level plane....... I don’t sweat the little stuff - everything (as far as possible) I see to be little stuff.

    Thinking

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    I'm afraid i might have to quit my job too but I'm only 50. Too young to spend my days puttering around and grandkids are still a long time away, if ever! For now I'll stick it out and see my therapist regularly. I really should start going to yoga classes again too.

    So grateful to have you all around keeping me level.

  • Yes Alissa, a cancer diagnosis can bring challenges in so many levels, life changing, yes...... but it is a time to reflect on what is important and push doors to see where the path of life takes you.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    True

  • FormerMember
    FormerMember in reply to FormerMember

    Hi 

    I'm only 44 and I think I may have to be retired off if they will give it to me,I have severe bone damage caused by the MM and have to walk about with a stick. The consultant describes it as destructive widespread bone damage.

    like you say, were too young to think about not doing anything but we have to put our health first. I don’t want anymore stress in My life that could make this disease return

    Mark

  • FormerMember
    FormerMember in reply to FormerMember

    Ug, Mark, so sorry you're facing all that. Keep taking care of yourself and finding ways to enjoy life.

  • Hi Alissa, 

    I’m a relative newcomer to yoga but it’s helped me lots in mental attitude even if I’m now a bit old to gain more flexibility in the joints! So yes, if you’re into yoga I’m sure it will help you. 

    Maybe if you’re forced to retire from a paid job a volunteer role that is challenging and regular would help you? That’s if finances will permit.

    hugs xxx

    Moomy