How do you cope

Hi Multimylomadaughter welcome to the forum. I am so sorry to hear what has happened for you and how you are feeling. I don't know enough about the treatment regimen you are asking about. However, my fellow Champ The Highlander will be along soon to offer information support and knowledgeable experience for you..x

Hi again MultiMyelomadaughter and well done coming across to the this corner of the community...... I did see you post yesterday but was leaving it to allow the group members to pick up on your post.

There are a number of members who are on post Stem Cell Treatment (SCT) so let's look for them to come along.

As I said before I have had 2 Allo (donour) SCTs for my 2 Lymphomas but have not required any further treatment over the past 9 years...... but from what I have read the post SCT treatment is more like maintenance to keep everything under control and is not as demanding as SCT.

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.

Quick background: I am a MM patient but I am all too aware that my family go through a lot in caring for and supporting me.

There is no need to feel guilty. Just like when looking after young kids, you need to make time for and care for yourself too. There is a small advantage in that your mum will understand that whereas babies won't!

Please spend time on yourself, whether it is work, hobbies or exercise. It will take your mind off things too.

Can you ask friends or relatives to help? I know that this may be complicated by your mum's immune system being weak, so visits could be an infection risk, but if someone else does the shopping and leaves it at the front door (or you order online) for example that could help.

I don't know how long the next phase will be, but it is often 2 cycles of consolidation before maintenance starts. There is light at the end of the tunnel, and you will then have your mum back again!

Thank you! She has a cycle of consolidation then into maintenance. She is deemed to be on the high risk branch. 

We had a cruise booked for next year and I’ve just took the decision to cancel my booking simply because of the unknown and she is still within the treatment phase/starting maintenance. I can’t risk her being ill abroad or infection.

thanks for your replies. It just seems so unknown at the moment 

On your mum being high risk, please don't feel too low. I am high risk too. The drugs have improved in recent years. I have been in maintenance for quite some time now and aim to continue to be so for a lot longer.

Although you have cancelled the cruise, there is scope to have holidays together. I have had quite a few since going into remission! A bit of planning on destination etc may be prudent, but there can still be plenty of travels to look forward to.

Thank you! I just think it’s too soon. Would rather be in the UK than stuck in the sea at the moment