Hi i was diagnosed october 21 with myeloma pps at 28 and light chain ratio of 125 . I am checked every 6 weeks at hospital but im finding it difficult mentally coping with the anxiety caused between appointments. Any advice on how to cope with this would be appreciated.
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Hi@Cliv77welcome to the forum ,you have come to the right place to ask advice onnhow to cope as its a common thread on here .
I am on watch and wait for MGUS IgG kappa every 3 months .However your levels are 28 I am reading and thats good you are having 6 week checks. I am a Grandma and having a diagnosis of MGUS is not unusual but if you are younger it will be more of a worry I think.I do find it really hard waiting for results until they come in then I try to get on with life .However to get to the point of advice for how to cope.I have hobbies I can loose myself in ,that helps, also I try to stay in the now and use the breathing meditations every day on BCUK website.The Nurses on the BCUK support line are very understanding and helpful as are the Nurses on the Myeloma helpline .I have a set routine for exercise,and a daily walk(.www.myeloma.org.uk ),you will find info on both.Do you have family for support? Anxiety is a horrible thing ,I have the T shirt on that one !
@Clivv keep posting and let us know how yiu get on .There are others on here who can also help you with their advice.
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Hi @Cliv777,
Well done for posting and sharing your current difficulties on this forum. The forum is a really great place for you to share and be supported. You’re very brave for posting.
From experience, it’s absolutely natural to feel uneasy in between appointments but speaking to family and friends may ease that burden. Also, you may want to consider speaking to your GP or to Macmillan who I understand have services to support you. Talking about these feelings can help you cope and make you feel much better.
Please be kind to yourself and do everything you can to stay positive. Please keep us posted with your progress.
Take care
Nick
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Hi @Cliv777
I have myeloma diagnosed 2017
Could I ask what is giving you anxiety so that I can try and answer your fears a bit better
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Thanks for your advice i do have my wife at home but myeloma is hard to understand.
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Hi the hardest part i suppose is getting my head around that it is cancer but is not treated straight away , i have had 2 previous cancers where ive had surgery and then chemo straight away so being on watch and wait is to me in my mind just delaying the inevitable and od rather just get on with it .
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Hi@Cliv77,thank you for your reply,if you are able to look on the myeloma web site it does explain the various stages leading to Myeloma and yes as you are saying to@ 2DB its hard to get your head around because there is no treatment as per your other cancers but lots of blood cancers are watch and wait and it is hard ,in itself watch and wait is a treatment because then you know something will be done if the MGUS is progressing.There is a very interesting video on the Myeloma UK website on this subject of MGUS.In the meantime can you find something to distract you .I understand your concerns .
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Hi @Cliv777 and another great big welcome to our forum, I am so glad that you have found us and had the courage to post so honestly.
I have to say @Bannanacake @NickB and @2DB have given you such great responses.
What a difficult time to be diagnosed in Covid times
I was diagnosed 18yrs ago with another blood cancer and my thoughts and emotions have been on high alert ever since.
I still get anxious before and during all medical tests and appointments, and as you are on 6 weekly tests no sooner has one appointment finished and the next is looming.
I think realizing that you are certainly not the only person in the world and that many of us share the same feelings.
You are now part of our forum family and I have found it the one place that I can be really honest about what is going on for me.
Yes, your GP is a good starting point and really tell them how you are feeling, the severity and impact on your daily life
I found counselling very helpful, I know it is not for everyone. I have also found the Blood Cancer UK support line brilliant if you would like to chat.
I look forward to hearing more about you and take lots of care and be kind to yourself
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HI @Cliv777 , welcome to the forum. I am sorry to hear about your anxiety. I have been on watch and wait since diagnosis and treatment for Follicular Lymphoma in 2016. Weirdly, even though I am an anxious person, I am not anxious about relapse which I know is highly likely. However, I completely understand how difficult it must be to have 6 weekly checks. I remember how I felt during diagnosis and it’s no picnic.
I have done CBT for General Anxiety Disorder following the death of my dad this year from bladder cancer and it was explained to me that my anxiety is mainly about things I can control. I found CBT very useful for providing tools that help manage worry. You can self-refer to use talking therapies for free via the NHS. I can’t recommend it highly enough.
BCUK also provides a list of things you can do to manage anxiety during watch and wait.
I hope that helps you. You are having a very difficult time and I am so glad that you feel able to seek help.
Take care of yourself and come back in to tell us how you are doing any time. We’ll be there for you.
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Welcome to the forum @Cliv777
You have come to a great place where you will find tonnes of support.
I am in the same position as you I was diagnosed almost five years ago and I joke about the fact I should have a reserved car parking space at the hospital. Not least I spend more time there than anywhere else , waiting for results and going to appointments is still an anxious time.
I find these hints and tips help :
- telling people close to me how I am feeling so they can provide me support or understand if I am cranky.
- planning to do something special after the appointment ( I have a neck ultrasound Friday so we are booked in a restaurant for a nice meal afterwards).
- try to see your check-ups in a positive light - you are being cared for by our amazing NHS
- I practice yoga mindfulness and meditation skills, the deep breathing that comes with this helps me to manage stress.
- try and get the first appointment of the day or plan another activity beforehand so you are busy and don’t have time to think about the appointment.
- Try to book your next appointment at the same time as any tests so you don’t have to wait a long time for the results.
Hope you find lots of support in the forum
Jules
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Hi @Cliv777
I can see your anxiety especially having treatment when diagnosed with your previous cancers
Myeloma is a relapse remit cancer so there will be times that it won’t be doing any damage and you will be monitored to when treatment is required
It may well be a while before your numbers rise enough to need treatment for myeloma and your bloods will be monitored for this.
It’s good to see your 6 weekly so you will be kept a close eye on
You won’t be left to the last minute there is usually time when numbers rise to discuss treatments and it will be started when one has been decided on.
See how your PP and light chains go over the next couple of appointments and ask your consultant how high would the numbers need to be to be talking treatment. You can monitor this which can give you a bit of control back
Myeloma is very individual so what worked for me could be different to you.
Same pp light chain wise
I decided that I would control the myeloma not let it control me
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Welcome @Cliv777 . I have same diagnosis. If you see things with myeloma as ‘not a quick fix’ and that each individual’s myeloma is unique , it might help . It’s easy to give advice as our personal and social situations differ , but treat the interim spaces as times to organise yourself , diary , medicines , reflective journal and identify something positive that you might want to achieve.
Groups like this has helped me at times but pop your head up when you feel able to
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Hi @Cliv777 I have been thinking about you and I just wondered how you are feeling now.
Be kind to yourself