New to Forum my first post

Hi this is my first post, I was diagnosed with Multiple Myeloma in 2017 and was put on watch & wait, my treatment started in 2018 and I had Stem Cell Transplant in Sept 2019. I can honestly say that it all went very well and the Myeloma is stable at present. It has been a stressful few years but I had a lot of support. There always seems to be something at present I’m anaemic and despite medication my Iron levels are still low. I have not really been out much since the transplant and the shielding has been quite hard, I just grateful I had the garden to keep me occupied. I’m sure I’m not the only one but I am quite anxious about going out and only go for Drs/hospital appointments, I have been told that I still have to be careful and just can’t bring myself to go out. I get my shopping & meds delivered, just think it’s going to take time.
I’m not sure if post is in the right place, apologies if its not

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Hi @Karenb56 welcome to this community I’m glad you found us. This is absolutely the right place to post! It’s good to hear that the Myeloma is stable at present and that you’ve had a lot of support these past few years - I imagine it’s all been really tough. If you ever want to talk things through with us on the support line we’re only a phone call or an email away on 0808 2080 888 or support@bloodcancer.org.uk
It’s so understandable you’re still feeling anxious about going out. Really glad you’ve posted on here and shared how you’re feeling, I think a lot will relate to what you say.

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Hi and welcome to the group. It’s definitely the right place to share! I hate it when it feels like it’s just one thing on top of another so you need to take care of yourself and be kind. It’s really hard to get back to normality isn’t it. Are there some small things you can do? Perhaps a short walk or meeting a friend in the garden? I’m doing what I feel comfortable with and small steps have really helped. The support line - as Alice suggested, is so helpful. Keep posting and sharing. The support here is amazing!

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Hi @Alice_BloodCancerUK thank you. This forum is just what we need. It’s nice to know there’s help and support outside of family & friends, sometimes it’s hard to tell them things as I don’t want them to worry anymore than they do already

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Hi @Nichola75 thank you for your kind words, my family are coming to see me now which is great, I’ve missed them so much. My friends will come and see me when they can but only if they can sit outside so hopefully the weather will improve soon. Taking small steps and doing what is comfortable is a good idea, thank you

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Hi @Karenb56, as others have said we really welcome you to our forum, I find it supportive and I hope you will too.
You have posted in exactly the right place, but as long as you post it doesn’t matter where.
Shielding must have been isolating for you, because of your treatment it must seem ages and ages.
Your garden must have been so therapeutic for you, I am in a flat so I do not have a garden as such, but on the flip side I always found gardening quite hard work.
I am so lucky to have lovely communal grounds and 2 local rec’s locally here.
You are certainly not the only person on this forum to feel as you do about venturing out. This is my new normal and in a way safe life routine with online deliveries.
I am glad that you have support, but I find sometimes family and friends do not understand me as people do on this forum. Also I see that you have the support line details, I have found them brilliant.
I have realised family and friends are going be government guidance whereas we are listening to medical advice.
I am waiting for the warm weather before staring to socialise and I will not be pressurised by others, although I miss family and friends so much…
As we all agree taking small steps and doing what we are comfortable with seems a very sensible plan.
I look forward to hearing more from you, take care.

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Hi @Erica thank you for reply, I totally agree with you. I hear a lot of people say we can meet again but they do not realise the advice we get is not from the Government but is medical. I really have to pace myself when doing anything from housework, walking and to do the garden it has to be dry enough to sit on the floor, I live with my 90 yr old Dad and we quite often laugh as I struggle to get up and he says he doesn’t know whose worse, me or him. We do have someone come in and help with the garden as we can’t do everything. Sometimes I think if we laugh about things it really helps

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Karen, Laughter is a great therapy so good if you can laugh about things. I do understand your reluctance to enter the world. I will be meeting up with friends soon so we agreed we would both do a lateral flow test. You can order on line or get from most chemists. We just feel it adds a little reassurance and I am determined to get back to some normality although I am avoiding crowds. Take care Joan

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Hello @Joan, I try to stay positive and laughing is very good medicine, I have the flow tests and use them. My Mum is in a Home and not at all well now, late stage of Alzheimers, the family are now able to see her 2 at a time, anytime by appointment, so we all test before going. It’s been so long being away from her but she is well looked after. I am determined to get out gradually but definitely avoid crowded places. Thank you, take care too

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Hi @Karenb56 I am glad that your mum is being well looked after, it must have been so tough not being able to see her for so long.
As @Joan says the lateral flow tests are so handy aren’t they.
@Karenb56, @Joan, @Alice_BloodCancerUK and @Nichola75 the old sayings are so true ‘laughter is the best medicine’ and although I am keeping in contact with people remotely it is not the same as being with the person and really having a good laugh together.

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@Erica definitely, I completely agree with you. For me speaking to my family on face time really helped but is not the same

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Totally empathise, I feel that I have become people phobic and few people understand that therefore it is so good to be in a group of like minded people.

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Hi @Belinda, yes, you are certainly not the only one. Have you been keeping in contact with anyone remotely?

Hello Karen
Much of your post sounded familiar to me. We seem to be on a similar path. I was diagnosed with MM in 2018 and had STC in Feb 19. I keep telling myself that in some ways I have been fortunate to have completed treatment before Covid hit and have just been on watch and wait.
However as you say the uncertainties of our situation make life very dull and monotonous. I too feel very anxious about getting out and about. At the moment I am just seeing my adult children and my granddaughter but have no idea how I’m going to expand my horizons. Not sure what I will do about social events at all. If you just keep turning down invitations are people going to stop inviting you or think you’re being a misery or over cautious?
I torture myself sometimes trying to imagine what it would be like if I didnt have MM. How would I be feeling now fully vaccinated at 61? Ready to do anything I want to or still pretty cautious anyway.
Like you I have got used to ordering everything I need and hardly leave the house or garden. Keep telling myself it can’t go on this way but the weeks pass and little changes for me.
At least the weather seems to be picking up. Back to the garden!
Best wishes
Sue

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Hello Sue its good to hear from you and totally know what you mean. I just can’t get myself to go out, I see all these people walking about in crowded areas with no masks and no social distancing. Like you I see family but they all do the flow tests. I am very lucky in that they’re all as concerned as I am and that makes me feel better about what I’m doing. I needed petrol in my car and I wouldn’t go out earlier I waited until 8pm tonight to go and get it as I knew it should be quiet. I’m just waiting now to see what happens with this Indian variant which is not helping. The weather has been lovely so making the most the garden and potting some of my pots, I’m really happy with how they look. Take care of yourself
Best wishes
Karen

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Hi @Belinda that’s exactly how I feel and it’s so good to know its not just me, my real frustration is not being able to sleep properly, it drives me mad then when I eventually sleep I don’t get up until later in the mornings. I suppose it will all sort itself out sooner or later.

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Hi Karenb56 - firstly welcome to the forum and well done for posting ! it takes courage ! I went through a Stem Cell Transplant a year or so before you and really understand your frustrations - wanting the freedom of “returning to normal” but wary of social contact because our immune system may not be as strong as other people’s… Whilst e-shopping and home deliveries allow us to eat and survive from day to day, for my sanity I like to get out and about in nature. A short (or long !) walk or cycle in the green / countryside really lifts my spirits. And even better if I can explore somewhere I haven’t been before - it really makes me feel alive again. And of course there are not many other people around so I don’t worry about contact and infection. But above all, keep smiling and laughing - it is a natural therapy !!!

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Hi @Karenb56, isn’t it good to know you are not the only one, one of the great benefits of this forum.
Your garden sounds much loved and I am impressed with the sound of your potting efforts.
Yes, I think our similar message is to do and venture out with what you feel comfortable with.

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Hi @Quentin your walk or cycle exploration adventures sound absolutely wonderful and free, aren’t we lucky.
Also as the saying goes ‘laughter is the best medicine’ and that is what I miss the physical social interaction and smiling and laughing with people. I talk to everyone whether they speak back or not, whilst I am social distanced and masked up on my walks.
The best things in life are free, aren’t we lucky.

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Hello @Quentin thank you, it’s so nice hearing from people who have been through the same treatment and know exactly how I feel. I try not to let things get me down and usually have a good laugh most day even if it’s at myself for trying to get up off the floor after sitting down, it’s a good job the plant pots in the garden are big enough for me to hold onto for some leverage.
Best wishes
Karen

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