Hi all, Nick here, 37 years old.
I hope you’re all coping okay with whatever life is sending your way today.
I have recently been diagnosed with a Monoclonal Gammopathy after some routine blood tests. The M-Spike is IGG Lambda at a level of 1.2g/dl. My free light chain ratio is within normal range but my Lambda is a little high at 30.10. I had a bone marrow biopsy which showed less than ten percent plasma cells and my ct scan came back with no lesions etc. I’ve had no noticeable symptoms so far but did notice on my last blood test that my Kidney function is slightly less than optimal. There doesn’t seem to be any other markers that the haemotologist was concerned about. She has advised a watch and wait strategy with blood tests every three months.
The question is, how do I cope with my anxiety in the mean time? After the initial relief that my diagnosis wasn’t life threatening it dawned on me that it could easily become so. My brain has gone into overdrive to try and “fix” this problem to which there is no solution. This has led to a debilitating anxiety cycle that has impacted my life in a big way.
Then there is the guilt. The guilt that so so many people have just received a far more significant diagnosis. I’m fretting about the “what ifs?” when they would give anything to switch places with me.
How do you all cope with the uncertainty?
Hi @Nick86 a great big welcome and I am so glad that you have found us and asked such a good question that most of us, no matter which blood cancer we have, have grappled with.
Firstly a watch and wait regime or active monitoring regime is fairly common with some blood cancers.
Then you say you are recently diagnosed, well I went into complete shock and anxiety when I was diagnosed and my thoughts and feelings went into high alert. This was not in my life plan, I also felt that this was something I needed to fix, but it was not fixable.
As for the guilt, yes, there are others in far worse situations than me, but I have realised on here that there is no comparing with others it is about how I feel.
Also the ‘what if’s’, ‘what could be’s’, etc. etc, going through my mind like a washing machine on overdrive, day and night.
Yes, living with the uncertainty is an interesting one as someone said to me, actually you have been living with that all your life, nobody knows what will happen tomorrow, who could have imagined Covid lockdown.
What I would say is give yourself time to come to terms with your diagnosis and it does take time.
You say that you have had no noticeable symptoms and of course you are the same person that you were the day before your diagnosis so in theory you can continue living your life as before in practice it is not that easy…
The emotional impact takes a lot longer to come to terms with.
I was diagnosed 19 yrs ago and I still get anxious before and during tests, results and appointments.
Some people benefit from counselling, I did, and your GP might help you with local services if you think it might help.
Macmillan Cancer charity sometimes offer a few sessions.
The Blood Cancer UK support line is there on 0808 2080 888 if you just want to talk to someone on a one off basis.
If you fancy a read there is a section on their website on mind and emotions
Blood cancer: mind and emotions | Blood Cancer UK
I also attach their information on monoclonal gammopathy of unknown significance (MGUS)
MGUS – monoclonal gammopathy of undetermined significance | Blood Cancer UK
I also copy the details of Myeloma UK
MGUS - Myeloma UK
Have you got any support?
Please do keep posting as I look forward to hearing more about you.
Be ever so kind to yourself, give yourself time.
Thank you so much for your reply and your very kind words.
I think part of the anxiety is due to the realisation that we have no control and that it’s an illusion. I feel that this diagnosis has been a serious wake up call and forced me to acknowledge certain things in my life.
I’m in awe of your strength and how you have managed to keep yourself together over 19 years! I used to be a competitive powerlifter and I thought that showed strength but I’m fast re-evaluating that definition.
I will certainly have a look at the links you’ve given me, so thank you for those. I think some form of therapy is definitely in my future!
All the best Erica, i hope you have a great evening and hope to talk soon.
Here is the GP guide to myeloma and monoclonal gammopathy of unknown significance (MGUS)
It may answer some of your questions and what doctors are looking for
I was diagnosed with myeloma in 2017