Hello Nick
Thanks for that, I really hope all goes well for you with the transplant. As I said, I gather it’s quite a gruelling experience, but well worth it if it’s successful.
I just wanted to let people know there is life after Acute Myeloid Leukaemia, it’s been almost 25 years for me. It does make you look at things differently, though, and alters some of your values and perceptions, as I’m sure you know.
All the very best
David
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Here, here David I have another leukaemia and I was diagnosed in 2003 @DavidW @Yorkshire1962, I know @DavidW a mere spring chicken, but I am still alive and chirping away !!!
I agree, Erica, I was just thinking how I wish we had this sort of forum when I was diagnosed, so valuable to get the thoughts and experiences of others. I probably can’t contribute very much from the medical point of view, I expect treatments have altered in 25 years, but I will keep banging on about how important it is to try to maintain a positive attitude; not always possible, I had my share of ‘down time’, but it really is worth making the effort. Helps if you have good support as well, as I did with my wonderful wife.
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My hope for 2022 is that we can live without a fear and dread in the pit of our stomachs. I know I and other people say take a day at a time but I want to plan a future, holidays, meals out, trips to cinema and theatre, day trips with granddaughter, visits to friends etc. To be able to go to hairdressers, nail salons, pilates/keep fit, supermarkets, chemists, shopping for clothes without me/us taking precautions and worrying if everyone else is.
I want my son, daughter, granddaughter and close family to visit without not taking tests and worrying they may pass on infections. To hug and kiss people
But above all I want my husband to keep well, to get and stay in remission. For him to feel like he is living a life of a healthy person not a sick person. And for both of us to feel happy.
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I really hope you can plan for all off those things. I agree, it would be lovely to know that the holiday that’s booked can go ahead, my daughters prom, weddings to attend. Everything crossed that we can all move towards this this year X
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Oh @summer123 what absolutely beautiful sentiments and something we should all all be able to take as normal life.
Thanks so much @summer123
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Hi all and thank you to those who commented on my thoughts, it is very heart-warming to know that people care and also that I didn’t get shouted down for my honesty.
I think my mood has improved now that Xmas and New Year is over - the relentless images of others getting together and having fun was tough as I approached my second Xmas alone.
I still don’t have any grand hopes or plans for 2022, but I don’t feel so down!
I do think that my adventure-filled life and achievements mean that I don’t really have any ambitions left, other than to see my son prosper and to put more effort into enjoying the life I’ve curated since the pandemic struck. However, I do have one hope for all members of the Forum - that you achieve your personal aspirations for 2022! Best regards, Angela
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Oh @SpaceAngel I am really pleased to hear from you and what a lovely last sentence to us all from you.
Yes, I think Xmas and the New Year period is so, so challenging and really exacerbated by the media and advertising portrayals of everyone in huge gatherings with happy, smiling, laughing faces and a table full of their wares.
I also think that I feel better when we have bright, long days of sunshine.
We are here for each other and really respect and support people being able to be so honest as you are.
I left school with hardly any qualifications but my training and achievements came later in life.
I would love to hear about your adventures and achievements.
How is your son?
I also wonder what 2022 will bring.
Take lots of care of yourself.
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Hi @SpaceAngel, its really good to hear from you.
Its good to hear that your mood is lifted. The Christmas period and new year can be so difficult and its completely understandable that you felt the way you did.
What things do you enjoy doing?
You mention all of these adventures that you’ve had. It would be great to hear about some.
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Wow, I know how you feel. I have multiple myeloma diagnosed end of August 2021 with several compression vertebrae in my back which makes walking very painful. I need walking aids to get me around and a sackful of pills to keep the pain at bay. To add to this my husband has diabetes, failing kidneys, a dodgy heart and recently incontinence. I am constantly cleaning up after him which is very depressing especially in my condition. Imagine having a bathroom full of s**t on the floor and having to clean that up together with clothes covered in excrement, what a wonderful life! I was hoping to be looked after but I think I drew a very short straw. I have had a very bad day and I need to sound off.
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Hi @Anita and @SpaceAngel , I think that it is so important to be honest and to feel able to sound off about how we are feeling. Nowadays everyone talks about the importance of positive thinking and of course it is important. But it’s also important to be able to say how we’re really feeling when things are very difficult for us. During this pandemic I’ve realised that I there are some people in my life who I can’t talk to when I am feeling low as I end up feeling more frustrated by their lack of empathy and understanding.I now choose carefully who I speak to when I am feeling down. As the saying goes you
realise who your real friends are. @SpaceAngel your honesty on this discussion actually helped me to be honest with myself over the Christmas period and I wish to thank you for that. I’ve realised that being honest with ourselves is one of the most important things we can do. You are both dealing with a lot. Take care of yourselves.
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Good morning @Anita. I’m glad you vented on here. It sounds like things are pretty tough at the moment. It sounds like you are doing a great job looking after your husband. However, as I read your post I wonder who is looking after you? Have you got any support in place as it sounds as though your husband and yourself will need support for the long term?
Don’t forget the support line of you need to vent some more.
Can you plan in anything nice today to give yourself a little treat?
Sending lots of love X
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It is one of the most important things but I find sometimes the most difficult. It’s something I will work on this year 
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Oh @Anita I think carers are the forgotten, unsung heroes and you are more than entitled to sound off and here is the best place because we understand as others just don’t.
As @Nichola75 says I also wonder who is looking after you. I was not brought up to ask for help, but I know realise that it is a strength not a weakness.
Have you any family or friends that you can be in contact with if not currently in person, perhaps by phone or virtually. I find it gives me a boost sometimes.
I also need a little space sometimes, perhaps a little soak in a hot bubbly bath (mobility allowing) or a shower.
I really agree with @Kirsteen, so well put.
I also have several healed fractures and compressed vertebrae in my back so I sort of know what living with the pain is like, it is relentless.
Please keep sounding off, I find it helps me and be kind yourselves.
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Nichola75 & Erica
Thanks for your messages. Yesterday was just a bad day. I do have family 2 daughters and a son. When I first came out of hospital at the end of September they were ultra helpful but as the months passed and I started feeling stronger I didn’t want to bother them as they lead such busy lives and my youngest daughter lives over 100 miles away. My husband’s health wasn’t that bad then but has gone downhill since with two 6 day stays in hospital in December. The district nurse came round today to dress his legs so at least getting help from her, she will come back on Tuesday and they are sorting out his medication so hopefully his health will improve. I am going to my first myeloma meeting on Monday where I shall meet other people with the same disease as myself so will be good to hear how they cope.
Thanks again for your support it really does give me a lift.
xx
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Angela, before myeloma caused my vertebrae to collapse I was a healthy, active and extremely busy 63 year old. I was so looking to retiring at 66 and getting 3 chickens to run around in my garden and a greenhouse. I love gardening, I used to spend hours planting, pruning and growing things to eat. Will I be able to do that in the future when I can’t walk without aids or bend down? If the future treatment which will leave me bald and feeling rubbish for a few weeks will allow me to do this then I will be happy. At 58 I was going down ridiculous water slides with my granddaughter in Egypt, watching my eldest daughter get married in Sicily. Life has so much to offer although when I was at my worst in August I was ready to give up, the pain and sickness was so bad. The medication I take has brought that under control so maybe I have a future. You mentioned being alone during the holiday period, is your son unable to visit?
Would like to hear from you. Anita x
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I think we all have those days don’t we and we need somewhere to offload.
I know you don’t want to bother your children but it might it help them knowing?
The support group will be great. Please let us know how it goes.
Really glad you are feeling a little better today
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For me it’s to travel abroad again (which I’ve penciled in for February) and to see live music again. I’ve got tickets for Tori Amos in March and I’m going to the Abba Voyage show in May.
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Hi @Anita it really comes over that you love gardening.
I have certainly had really black, bad days too, thanks your honesty really helped me.
Please let us know how your first myeloma meeting goes on Monday, exciting and scary.
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Hi @Franko it ‘sounds’ as if you are planning your music adventures for 2022.
I am typing this listening to Stevie Nicks in concert.
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