Recently diagnosed

Hi Emeraldalou,

I was diagnosed in August and, like you, I was blindsided. I’m asymptomatic, stage one but not started treatment yet. Cancer is a terribly lonely disease, even when you’re surrounded by family and friends.

This is not my first experience of cancer unfortunately but I have always tried to read up, research and face it head on. I’ve also tried to keep myself in the same routine of working, keeping busy and staying fit. The local macmillan nurses recommended CBT to help me deal with the shock of it. I wasn’t too keen but went along anyway. The session was surprisingly helpful, it made me realise I’m the same person I was the day before those horrible words were said to me. There is also stages of grief that everyone goes through when they’re given awful news, disbelief, anger bargaining etc. I absolutely know, because I’ve been here before, that at some point you come to accept that this is what I’ve been given now let’s deal with it.

As horrible as all this is, advancements in myeloma care are happening all the time and I have been told that there’s a good chance that despite this being a relapsing and remission type illness you can live quite a long time and fairly normally for long periods. I’m holding onto that. I’m not sure if this helps, we are all different but, as you will see on this forum, there’s lot of support and understanding. 

take care x

Hi Emeraldalou 

I completely understand how you are feeling. I was diagnosed with asymptomatic myeloma 4 1/2 years ago. It is so scary, I think the not knowing when it might progress is the worst part of it. I spoke to a nurse at Myeloma UK who was super helpful and it made me feel as though help, advice and support was there for me whenever I needed it. Through a conversation with her, I learnt about Curcumin, and how it can help support your immune system. I started taking it and my paraprotein level reduced and has stayed stable ever since. Apparently, it doesn’t work for everyone, but I’m convinced it’s helped me. Please don’t feel alone, this forum is here for you and there’s plenty of help and advice to be had elsewhere. Hope this helps x

Hi EmeraldaLou and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

I am pleased to see that some of the group members have put up replies - there is nothing better then ️ no with others who are navigating the same journey.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00 where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Thank you for your reply, it means alot to hear from people in the same boat as myself. 

I went back to work today and it's really helped me being in routine. 

How did you go about getting signed on for CBT, is it something I ask the nurse about or should I ask my GP? 

Is Curcumin a tablet? How do you get to speak to a nurse at myeloma UK? 

Thank you so much for your response, it feels better knowing I'm not alone with my feelings. 

Thank you so much for all the information

 I will definitely look into the websites and centers you have mentioned. 

It's been such a shocking December and now I have the outcome of all the tests I still feel as unsure of my future as when I first heard the doctor utter the words cancer. 

I'm such a naturally impatient person, though i do hide it well. Feel like I'm being tested in life left to watch snd wait. But maybe it will make me a better person in the long run. 

Hi Emeraldalou, The macmillan nurse referred me for it but I would think your GP also has access to the service. I’ve had counselling previously and I didn’t really rate it which is why I was reluctant to try CBT but, as said, it definitely helped and made me think about things differently. 

Hi  EmerladLou,       i am  Male   66  with MM,  not Asymptomatic   like you,  but undergone  4 cycles of DvtB       treatment  since  diagnosis in June,     the doctor called ME     9.30 am,   Monday morning !     66th Birthday,  my   retirement day!     sit down you and now on a Fast track for Cancer    suspected MM,         which  generated,  so fast    tests,  from Full body MRI ,   chest  X ray,   bone marrow biopsy,    and  the first meeting with the consultant to confirm the levels in my blood   was a BIG  Shock,   the    support of family and friends  have helped me come to terms with the   situation,    now  just had  Stem cell  harvest and planned stem cell  transplant,  for Jan,     YOU ARE NOT ALONE,   Mike  ( the highlander)  as given me and other forums users so much    guidance and his  story is  truly an inspiration to hope!      i see from other posts  you got out to work,   and   sharing the news should not be daunting,  the more people try and understand,  that you may look the same as normal, but your body and more so your mind  can    tell a different story,          there is some great treatments out there, and  the health care teams i have had to support  me and treat me  over 2 different NHS  trusts is unbelievable       thats  all i can say to support you,  and wish you well,  and of course Macmillan  help books give some great advice, in plain language .  Kevin   ( Vespa)

Hi EmeralaLou

Yes, Curcurmin is a tablet. Its the active ingredient in turmeric. I use the Dr Best brand, 1000mg. Its expensive but a bottle will last you for 4 months.

This is the phone number for the infoline at Myeloma UK - 0800 980 3332 I found them to be really helpful and supportive.

A few months after my diagnosis, I turned to Yoga to help with my mental health. Yoga helps to ground you and also it is good for bone strength, I find it a huge help.

Im a carer for my son who has learning disabilities, Im his sole carer so I have extra reason to stay as healthy as possible for as long as possible. I guess everyone is different, and you will find different things that work for you, but I would say keep an open mind. You will find comfort and support at some point.

Words aren't easy eh?  I think most of us feel alone from time to time when dealing with something of this magnitude.  I love my family, but I found I am comforting them more than taking care of my own emotions, which isn't ideal.  I'm a single mum too, though don't work. My daughter is nearing eighteen, but has autism as well as a few other things, so she is very young at heart, yet at other times incredibly wise and sensible.  Throughout this entire thing, I think I worry about her more than I do myself.  I know, not just think, but know we should all take the time to come to terms with this in our own way, and if that is curling up in bed, I really hope you get the chance soon.  Think another issue is, you can't see this cancer from the outside really. People look at us and think, they are doing ok, but I know inside I am a huge mess physically and emotionally.  It's utterly crap, but at least here you can be open and honest, vent, laugh, cry, whatever.  You're not alone.