79 year old mum just diagnosed - feel lost

Hi Bec a bo , it's Sue here and have just seen your post .You have so much to manage at the moment and I really wanted to send you and your Mum all the best at this testing time .

I was 66 wgen diagnosed a couple of months after I retired .I have had alot of treatment including the injections meds at home and a stem cell transplant Aptil 23 .

I'm in remission now and thankful for all the care I have had and continue to receive. I'm really sorry but I can't answer your question about know any one in a similar situation as your Mum .Hopefully someone on this site will .However I can say that there is likely to be alot of sitting around for the first few visits to hospital so from my experience clothes that are soft comfortable and layers that can easily taken on and off are handy .Also prop best to avoid tights and skirts , trousers , socks and comfortable shoes are the way to go.Check out the snack and drinks situation at the hospital a hot drink and favourite snack are usually welcome. 

If your Mum has been assigned a specialist nurse she will be very helpful to you and your Mum .My nurse was brilliant and so helpful kind and professional x

Myeloma UK are a good site to look at  Avoid DR Google if you can. Sending you all my very best wishes .Always here to chat .

Sue x 

Hi Sue, 

Thank you so much for your reply and how amazing that you are now in remission

Yes we have been assigned a specialist nurse so I will drop her a message to see if there is anything I need to prepare for next week.

I will take a look at Myeloma UK thanks

I'm preparing to learn alot over the coming weeks and months.

Thanks again.

Bec x

Hi Bec, so sorry you have received such devastating news and all in the same week, my heart goes out to both you and your mother. My husband was diagnosed in Nov 2020 and his myeloma was very advanced. He was given just months if he didn’t have treatment and here he is still with us today having gone through all the chemo etc. So there is strong hope you will have your Mum for quite a while. As Sue said, comfortable clothes are absolutely the best with tops that are loose and easily pulled up from the sleeves, as your Mum might at stages be in the position of having lots of blood tests. In the first six months I found having a chart with the medication on very useful as I couldn’t keep up with all the names and dosages, I’d tick them off as they were administered. It does become easier as time goes by and everything becomes familiar. Also, a written list of the medications kept to one side, just in case an ambulance is ever called, they will ask for all the information and it is so much easier to have it all written down and you can just hand over a piece of paper. I purchased a blood pressure monitoring machine, an oxygen monitor and a digital ear thermometer, so I could have as much information as possible ready for the specialists/doctors if you ever need to make calls to them. Over the next few months you might want to consider taking out a Lasting Power of Attorney, in the event that your Mum is too ill to make decisions you will be able to make them for her. Again, I put this in place for my husband and my Mother, but as yet haven’t had to use them, it’s a ‘just in case’ precaution. Particularly as your Mum has vascular dementia and Alzheimer’s, both conditions in my family so I understand the implications. There is so much for you to think about and it can feel completely overwhelming, but Myeloma is very treatable and gradually you will find everything settles. As a fellow carer I know how scary it all feels right now, but you will find you have amazing support around you. One of my friends said to me ‘don’t ever turn away help, Marion, lean on your friends and family who love you’. I haven’t forgotten those words and that same friend is coming round to see us today and I’m looking forward to a lovely hug and hours of chatting and laughter.

Lots of hugs to you and your Mum, Marion x

Hi Marion,

Thank you so much for your kind words and advice. The memory issues seem to be the main issue at the moment as mum is so confused about what is going on. I already have power of attorney so all good there.

It's just feels like all my head is consumed with is this and I cant work on other issues. I'm still only in my 30's and have two young children also so alot to do.

I will look at getting the things you have mentioned and get a note pad to make a list of medication. I have just ordered a tab time automatic medication dispenser so that will help when I'm not with mum.

Iv been told to prepare for alot of hospital admissions and ambulance calls, did you find this to be true?

Glad your husband is doing well and that you have a good friend for support. Enjoy your day of hugs and chats.

Thanks 

Bec x

Hi Bec,

I’m so glad you have an LPA in place already, one less stressful ‘thing’ for you to do. You sound like you are getting organised and prepared already, fantastic! It’ll really help to make you feel you have some level of control. As to the hospital admissions and ambulance calls…. the chemo causes the immune system to lower substantially and infections can be an issue, so yes there could be a possibility but it’s not always the case. As a rule of thumb, as soon as my husband started complaining of headache, or feeling unwell, I took his temperature. If above 37 I monitored regularly throughout the day and if it continued to rise then I treated with paracetamol. If the paracetamol stopped working and he started to develop a fever with his temperature continually above 37.5 I either called for an ambulance or took him straight to A&E (after I have made a call to the specialists). But, as a word of encouragement, my husband had a stem cell transplant which made him weaker and more susceptible and I suspect your Mum, because of her age and vulnerability, won’t be having that treatment. It’s coming up to two years since I’ve had to take emergency action and although my husband has caught viruses etc., he’s managed to fight them off without intervention. 

You mention about your head being consumed, I felt the same way. At first all I could think about was Myeloma and I read everything on the Myeloma website so I could learn as much as I could and then be able to help. I listened to the MacMillan nurse who told me to steer clear of google which meant I didn’t read incorrect information. Gradually I settled down and, believe it or not, ‘things’ became ‘normal’. Our life has changed but not in as bad a way as you might expect. We just try and be sensible, we steer clear of crowded places or supermarkets when they are really busy. We asked our friends and family to respect my husband’s needs to steer clear of viruses and to not take risks, apart from one friend who didn’t respect and passed on a chest infection (which then brought on a hospital admission), everyone has been amazing and steer clear if they suspect they have a cold etc. I know it will be a lot harder for you, having young children to look after, but any help and support you can give your Mum will be just perfect and if by any chance you make a few mistakes along the way, you’re only human with a lot on your plate. It’s a big learning curve but I know you will get there. Just remember to look after yourself as well xx

If at any time you fancy chatting more, please feel you can.

With hugs, Marion x