[neilwParticipant]

Hi,

Just started 2nd cycle of VCD treatment, so still very new to this…..

Looking through forum is a mixed blessing as there is good news, plus indications of just how difficult this can be.

Unfortunately, I am suffering acute panic & anxiety attacks and have only a very limited support network (nobody close enough to go into / share all the details!).

Any suggestions / pointers / urls to good information welcome, please…?

[greg777Participant]

Hi Neil,

Thanks for posting. Hopefully you will find support on here from loads of people who are in a similar position. I had a really rough time with panic and anxiety attacks. One thing that really helped me was having regular sessions with a psychologist. They really helped me understand how my brain was working and how to deal with the situation I was in and after a few months I can genuinely say that I am feeling much more in control of things. Your hospital team should be able to refer you to one if you think this is the right route for you.

Other than that, all I can say is that whilst everyone has a unique journey with MM, everyone on here is always available to support you in any way we can. I know that these forums certainly helped me to feel less alone so please use them to help you in whatever way you need.

All the very best
<p style=”text-align: center;”>Greg</p>

[peterlParticipant]

Hello Neil,

What you’re experiencing is entirely natural, and it would be very odd to know you’re suffering from MM and have little anxiety.  I’m still coming to terms with my diagnosis (nearly 18 months ago), and having gone through 8 cycles of VTD, I’m also pretty certain that these can affect mood and certainly anxiety, especially in my case that after the last course of treatment (Feb 16), I was still walking around with a loo roll tied across my shoulders until Sep!  It was rare, but the drugs affected me personally, in that way.

Now I can go through hours/days giving MM no consideration at all, but some days I wake up and it hits me like a thunderbolt, especially when I get a pessimistic blood test result.  BUT, we are where we are…  I have two specialist oncology nurses that are very busy but devote time to me and answer questions when I’m at the hospital, or even over the phone, so they are an invaluable source of support.  And as Greg says above, this www is a brilliant resource for information and support.  You can always use the ‘ask the nurse’ facility (myeloma uk) as well, either online or using the phone (I go online, so I don’t know about the phone usage).  But the nurses are very caring and professional, and have helped me no-end.

Very best regards to you, and I hope all goes well.  Keep us informed regarding your progress.

Peter

[bandityogaParticipant]

My husband was diagnosed in October 2012 and we both suffered from anxiety. He was give a phycologist to talk things over with whilst he was in hospital but it didn’t help very much. He was put on anti depressants which calmed him down. Everyone has anxiety in the beginning but you learn to live with myeloma. Not the same life before diagnosis but live one day at a time and try not to look too far into the future.

Talk overr your treatment with your consultant and ask if you are having a SCT if you get into remission. Find out all you can about your myeloma and keep asking questions. If you are not happy with your consultant you can be refered to another or ask for a second opinion. The myeloma nurses are really excellent so don’t be afraid to phone them (calls are free)Knowledge is good. Hope all goes well.

Maureen

[davidainsdaleParticipant]

Hi Neil

I would suggest having a look to see if there are any local myeloma support groups near to where you live.

There are now over 90 around the country so hope you fill find one suitable.  These provide an excellent opportunity to meet and talk to others in a similar position.  In the absence of a myeloma specific group there are plenty of haematology and macmillan support groups which may be able to help as well.  From a personal perspective as a patient I find these groups invaluable.

 

There are also regular patient information days held around the country which are great events to go to.  If there isn’t one close by there is always the option of combining this with a short break?

They say that having myeloma is like being in a marathon, not a sprint , so you have to keep going!

Hope this helps.
David

[smugglerdaveParticipant]

<!– .bbp-reply-author –>Diagnosed in July 2015. Treatment routine has been interrupted several times by admissions to hospitals for unrelated illnesses.
<div class=”bbp-reply-content”>

I live in West Wales, and receive chemo at Glangwili (Carmarthen)Hospital day unit.

I have never been able to contact anyone to share thoughts and/or feelings about this disease. The nearest place I have found to attend talks or meetings is in Cardiff 96 miles away from me.

It would be good to communicate with someone, anyone, and I hope that someone will make contact with me to help break the seclusion of being in such a remote place.

My E-Mail is: mcwilliam573@btinternet.com

Thanks, David<b></b><i></i><u></u>

</div>

[neilwParticipant]

Hi,

Thanks for the messages and apologies for not replying sooner – this ‘stuff’ can takeover your life…..

I was fortunate to live in Bedfordshire which has a very good NHS mental health support team.  Once they realised how bad my anxiety had become, they moved fast and got me into a hospice for a couple of weeks to sort out medication (and I’m still on the anti-depressants along with the pain-killer, etc., etc.).  Interestingly, they changed the slow release morphine drug and that made me more ‘awake’ which also helped my mental state.

However, I am ”fortunate” in that I found a cousin had also been through Myeloma and his family took on my care based on renting a small flat just down the road from them – expensive, but life changing support.

I’m coming to the end of the 4th cycle of chemo, so plenty of things still to happen (especially the transplant) but I’m at least able to face life and see some future.

I would recommend anyone to get as much psychological support as they can get from the local NHS teams (and it probably means you having to do the running around, chasing, etc., yourself).  Your local specialist nurses, and any from MacMillan will also be able to help and point you in the right direction.

Whilst the NHS staff I’ve dealt with (at ALL levels) have been superb, the system runs in silos.  It seems to require the patient to make the links with psychology, orthopaedics, etc., rather than assume it will happen because you are in the system.

Good luck finding the support – it is around, but it will take effort!

Cheers,

Neil.

 

 

[Author]

Posts