Hi, I’ve never written a thing like this before anywhere, so I’m not sure if there’s a right way to do this. D:
But, pretty much 2 years ago I had lymphoma (when I was 16) and recently I have been worried I am relapsing. I am not one to worry, and never had anxiety about relapsing before now. I feel like the symptoms I have are super mild, and can be summed down to just the cold I had - but I am suddenly so worried that I am actually relapsing… to summarise I have a super tickly throat which I can’t stop coughing despite no pain (and sometimes sounding demonic), and recently I have been super drowsy and needing to nap, despite me doing nothing all day haha.
I feel a little pathetic messaging my old nurses, when it has been so long, and when it is something so small. Do I go to the doctors? Or should I just wait another couple of weeks… I think I am over reacting.
I am not really sure what kinda response I am expecting from this forum to be honest, I guess I just don’t want to feel alone on this…
doorbell 123 Hi just wanted to say that I hope you get answers soon and welcome to the forum. I don’t know about lymphona as I have polycythemia vera. But I think if you have concerns it’s best to get them checked out. Best wishes Liz59
Welcome to our forum & thank you so much for posting.
We are sorry to hear you are feeling anxious about relapsing. Please know that you are not alone in how you are feeling, we have a page that may be useful for you to read over that includes feeling alone, fearing fearful of relapse and ways to look after yourself when treatment ends After blood cancer treatment ends | Blood Cancer UK.
If you think it would be helpful to talk things through you can also contact one of our support service nurses on 0808 2080 888. As well as this, if you search within the forum you will find others who have similar experiences and may have had similar concerns.
You have mentioned that you have some symptoms that may be down to a cold as well as feeling more tired. Although there are many reasons why you may be feeling this way, such as virus, we would encourage you to speak to a member of your healthcare team as they will be able to support you as best they can.
Making an appointment at with your GP or contacting your haematology team does not sound unreasonable. A lot of patients will message or ring their previous clinical nurse specialists during times like this as they have all of your medical history and will be able to provide you with individualised advice and reassurance, so I think you should definitely give them a call or message and hopefully they will be able to provide you with what steps you should take.
Hi @doorbell123 a great big warm welcome to our forum family, you are never alone on here and your post was perfectly done.
It is very natural to worry about relapsing.
My personal feeling, I am not a medical person, is that I dealt with my diagnosis fine and kept going then there was a delayed action till my emotions and thoughts burst out in all directions.
I actually did benefit from some talking therapy via my GP.
Your old nurses might help to.
I was diagnosed 20 yrs ago and I still get anxious when I have any symptoms and think it is my leukaemia.
I do always get them checked out otherwise I just stay anxious.
The symptoms you describe could be down to so many things or nothing at all.
Please do let us know how you get on and be ever so kind to and look after yourself
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Hi @doorbell123
I know your feelings too well it’s so hard, I get a pain in my big toe and go in to panic overdrive!
A lot of the advice around coping with the fear of relapse is about working out how to return to a normal life after your treatment or diagnosis. You learn to find a balance between processing what has happened and acknowledging how this has changed you. It also important to think about rebuilding what’s important to you and moving forward. While nothing can take uncertainty and fear of relapse away completely, it is possible to learn to live well alongside or in spite of these fears, so that they are present but not stopping you from doing what matters to you.
I attended a Live your Life workshop through a lymphoma action group it was very effective . It was useful it helped me to think about living not think about the prospect of I might die. We are all going to die but we are all also living and it taught me to live my very best life. Which is exactly what I am doing.
If I have a health concern I raise it with my team and get it checked out in the last six years since my initial chemo I have had three more surgeries , more scans than I can remember, blood tests every eight weeks but heh that was six years ago I am alive so all that’s a small price to pay. So don’t ignore any concerns you have speak to your doctor.
Every day new research brings newer and better treatments so there is always hope when I was first diagnosed some of the treatments that I might now be given were not even around so I always remain really positive that even if I relapse that medicine is a miracle.
Hi there
No your not over reacting just unsure of what’s happening which is totally understandable
Your old nurses I am sure would be ok with you contacting them even if it’s just reassurance
There is no harm in contacting your GP either and ask them to do a blood test
Anything to put your mind at rest
Worrying causes its own symptoms
Did you test for Covid at all?
Even when we are in remission we are still susceptible to infections and can take longer to recover
We can also be our own worst doctor thinking we know what’s wrong what other people think when we aren’t in control of other people’s thoughts just our own
Make that contact on Monday with one or both of the medical profession and let us know how you get on please
Knowing one way or another will take the pressure off your thoughts
