Hi @Karenb56 your story is familiar to me too. I was diagnosed with MM in 2018 and had my SCT in 2019. Have been in remission since and understand your anxiety totally. I’ve had both vaccines for Covid and it’s my personal decision to try and take part in life as much as possible and do as much as I’m allowed to. But that’s a personal decision not a recommendation as I know not everyone finds it as easy to overcome their fears and try and get back to normal. I hope you find the way forward that helps you best and don’t be lonely. We’re always here. Good luck!
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@Franko hi thank you for your message, its very reassuring hearing from everyone, makes me feel better and I’m trying to do things gradually. Great to have people who have been in the same position. Pleased to hear you’re in remission, take care
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Hi @Erica @Nichola75 @Alice_BloodCancerUK @Franko @Joan @Lockdownsue60 @Quentin hope everyone OK, is anyone else feeling anxious about the changes due to happen in 2 wks. I’m really worried about the increase in Delta cases. I know we have got to live with this but I thought masks would’ve been kept in place. I’m still not going out unless I have to. Dr’s appointments are still being conducted in phone calls, keeping us away from hospitals unless it’s really necessary. I find it difficult to explain how I feel over the phone. I’m more worried now than when I was diagnosed, had chemo and SCT just can’t sleep and feel sick. Any help would be appreciated
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Hi @Karenb56, I think you have expressed how many of us are feeling.
You say you find it difficult to explain how you feel over the phone, I have found it useful to write down my fears, thoughts, feelings, questions, practicalities, symptoms etc. beforehand so I ensure I cover everything I want to and also I need to ask follow up questions.
You also say you cannot sleep and feel sick so make sure you fully cover these issues.
Do you feel some counselling might help you, it has me, if so ask for it.
So perhaps you might feel a GP appointment is needed.
I think I feel more resigned that this was going to be announced today.
Look after yourself we are all here to support each other and let us know what you decide to do.
Look after yourself
Thank you @Erica I have contacted my GP this afternoon via the website and I did put in writing exactly what problems I am having. I was put on Amitriptyline at night for the aches/pain in my lower back, hips & legs which at the same time helped me sleep. Dr thought I could have nerve end damage from the chemo. I’m hoping to get a telephone appointment. I did have counselling before for panic attacks/depression and it did help so that’s a good idea. Don’t seem to be thinking straight at present, very frustrating. Thank you for being there and for your sound advice. Take care
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Hi @Karenb56 please let us know how you get on with your GP and counselling and take lots of care of yourself.
Hi @Karenb56. I’d suggest giving McMillan a call. They are currently working with Bupa, offering 6 sessions if you fit the criteria. Let me know how you get on. I completely understand where you are coming from and how you are feeling. Please take care X
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Thank you @Nichola75 I will have a look at that and see what I can find out, hope you are keeping well. Take care x
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Hi @Nichola75 I had my COPD check and had a long chat with my Nurse about how I was feeling, she has put me back on Amitriptyline for the aches in my lower back,hips & legs and they also help me sleep. My anxiety has improved a little and I’ve been out with my daughter and grandchildren, they took me for a lovely meal for my birthday. Had my 3 month check with my Haematologist and the myeloma is stable and iron levels improving so some good news. Hope everyone is keeping well, best wishes
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Hi @Karenb56. It’s great to hear from you. Hopefully the medication will make you feel better still. Pain is so miserable! It sounds like you have a really good nurse which is so great.
I bet your daughter and granddaughter really enjoyed the day with you. Has anything in particular helped the anxiety? I’ve just asked for sleeping tablets. I go through phases but know when I don’t sleep my anxiety is worse.
Stable is good news. However, I often feel deflated when I get that news bacause I just want them to tell me the lymphoma has gone away which I know will never happen!
You take care of yourself and be nice to hear how you are getting on.
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@Nichola75 well sleeping better is definitely helping, I’m not being so hard on myself if I don’t feel like doing things. I still wear a mask outside of my home environment. I think the Covid issue is not going away anytime soon so I will continue to do what I feel is right for me. I still keep clear of main shopping areas but I get my shopping and prescriptions delivered and Tesco have said they are keeping the priority slots. Its been nearly 2 yrs since I had my SCT and my blood counts have been the same since the start of this year, my checkup is 3 monthly but still phone consultation as they don’t want us going to the hospital unless really necessary.
Like you stable is as good as it gets but when I tell my family and friends they are so pleased it’s puts it into perspective 
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Yes @Karenb56 and @Nichola75 stable is very good.
I like your philosophy @Karenb56 especially the bit about not being so hard on yourself.
Your wellbeing comes first and how important are other things.
Your nurse sound really good.
I bet that birthday meal felt so special.
Spoil yourself and keep posting
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Hi @Karenb56
Im in a good partial remission with myeloma
Had a SCT in 2017 I was very poorly through my treatment and it took 5 months post SCT to get going I returned to work phased return but my paranoia for staying germ free took quite a hold
Apart from work I only went to two coffee shops and only drank out of takeaway cups
I carried hand sanitiser everywhere
I did manage the cinema a couple of times.
Fast forward to Covid March 2019 and I was relieved that I was sheilding. I had and still have my shopping delivered the drivers know about my myeloma and follow the instructions I leave for them
We have a therapy centre called Yeleni who put on a weeks worth of activities so I joined gentle exercise, reiki every morning, yoga, meditation there was a coffee and chat afternoon. All these things done seated we had a go at seated ballet too all on zoom
It gave me a routine and structured to my day and I’m fitter now than before
My friends visited I had a chair outside my living room window where they sat and I talked to them through the cracked open window
I make a cuppa and put it on the window sill for them. I provide cushions and blankets on cold days and an umbrella of needs be
I still do it now as they understand my anxiety surrounding Covid
My two kids 19/23 stayed strictly social distanced from me they hand sanitised before coming in clothes in washing machine then showered and stayed in their rooms
I cooked plated I went into my lounge and they collected food
I’m lucky that everyone around me understands and although I miss hugs and I’m happy keeping safe for now.
Going back to a secure Covid work space gives me the interaction with people
4hrs is enough and I’m glad to get home and shut my door
I quite like life without all the drama
My bloods have been stable
My PP5 my light chains 75
Neutrophils and WCC are normally low up until I had my vaccinations
They have improved slightly
My PP is 8 and my lightchains have risen to 220
They are being monitored watch and wait but while my overall bloods are good my team aren’t too worried and rely on me reporting any changes with pain.
If I could give one bit of advice it’s get a good routine (that will help with sleep) drink plenty of water eat well and take each day rather than looking too far ahead then getting disappointed when that goal isn’t reached
Some days just getting up and having a shower and making a cuppa is all you can do and those I call rest days and after all my body has been through I deserve them 
Always be kind to yourself your living with myeloma stay in control of IT rather than the other way around
One day at a time how ever long it takes
You got this 
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Thanks so much @2DB for this comprehensive update since 2017. i
You have really shown how taking one day at a time and listening to your body is so important.
Your Yeleni therapy centre sounds wonderful.
Your family and friends sound so caring and understanding too, boundaries are so important.
I am glad going back to a Covid secure workspace is working for you. Interaction with people is so wonderful. Although I am sure you are glad to get home and shut your door.
Always be kind to yourself, one day at a time and living with myeloma you stay in control of IT rather than the other way around.
I like your philosophy, Keep posting.
A life without drama sounds good to me too.
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@Erica
I have had my fair share of drama and lockdown has shown me that I don’t have to put up with it.
Your best friends will be there whatever the feelings going on those that don’t care will naturally disappear
For me life is far too short for drama anymore I have even deactivated Facebook and what a difference that makes
If my story can help one other person then that’s beautiful
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Oh and I was gifted a Fitbit at Christmas and that has been my turning point mentally physically and sleepily 
PPS I downloaded an app that counts steps onto my app and have used my downstairs to walk all sorts of places too it’s called Walk the Distance, you don’t need to leave your house either
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Hi @2DB. A really good example of how important it is to take care of yourself and be kind to yourself. We all need to do a bit more of that!
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Hi @2DB it was lovely reading your story, your therapy centre sounds brilliant. I’m glad you are back working in a secure environment. I worked as a Carer in the community so have been advised it’s not a good idea going back as too many people are in and out of their homes, if I had a one to one job it would be safer. I only have 11 months before I can retire, would’ve been this year if the age hadn’t changed.
You make some very good points, my family and good friends all understand how I feel and support me. I spend a lot of time in the garden and have just dug up the last of some potatoes I’ve grown for the first time. Its very rewarding and I’m now looking to plant some late potatoes which should be ready for Christmas 
I also have peas & beans growing 
Take care everyone 
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Hi @Karenb56 thanks for showing up so well the problems of returning to work as a carer and with you so near retirement, if the goalpost hadn’t been moved on you. This also affects you financially I expect.
I am very impressed with your gardening results and I bet it is rewarding seeing the fruits of your labours, literally. Christmas potatoes sounds great to me.
Is anyone else gardening in these times?
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