@Erica I really admire you going to exercise classes. I’m afraid even walking any distance does for me these days. I have however found a lovely lady who does wellbeing, reiki etc locally, and after consulting with my doctor he has allowed me to have massages. After the first one I slept for a week without pain, the first time in a few months. I have now booked to have a full body (including every part of me except boobs!) massage fortnightly. My daughter said that it sounded more like a necessity than a luxury, so I don’t feel so bad now, and the lady was so pleased when I was able to tell her how much difference it had made
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Oh Louise the full body massage, minus boobs, sounds worth every penny to me, you would tell everyone else to go for it. Why are we so bad at spending money on ourselves? I blame my upbringing and having periods of my life when I had to watch every single 1d and 1p. Pain and lack of sleep are so debilitating. Your daughter sounds very wise, she must get that from you and Gordon.
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A full body massage sounds amazing and especially if it helps with your aches and pains. Is it quite expensive to get one?
Joshua, this lady works from home and only charges £35 for an hour. She does not worry about money, but more about the client’s wellbeing. She tailors oils and treatment to how I am on the day and often over-runs. I can also message her to let her know how I am getting on. Nothing is too much trouble
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Jane …I was diagnosed in July 2018 out of the blue as you were writing this comment and now 18/12 since the end of treatment ( which was sooo tough and nearly killed me off !) I am still struggling with fatigue and so was soo reassured by your advice and also that it took you 2.5 years to get back to more normal you ! Thankyou it is so helpful .I have only just felt able to look at forums etc as they often are not about AML and also emotionally I have not been up to it ! Helen
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Hi Helen, a very warm welcome to our forum, your treatment sounds tough and if you think about what it must have taken out of you physically, emotionally and practically it is going to take quite a time to build back up again. Why does it always take longer to build back up than to get run down?
I know we have a range of blood cancers on this forum but we often seem to share symptoms, thoughts and feelings.
We are here to support each other as perhaps family and friends sometimes cannot and you can contact the wonderful Blood Cancer UK Support Services Team to talk on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
Take care of yourself.
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Hi @Hellenjoy and welcome to the forum. I’m glad you have felt able to join us. Its such a supportive and informative forum. Sometimes we just need to share thoughts and feelings or just have a rant - whatever the reason there is always someone to listen! How have the last few months been for you?
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A warm welcome to the forum @Hellenjoy I am so glad you’re feeling able to look at forums, it’s totally understandable that you’re only just feeling able and emotionally ready to access this sort of peer to peer support. I can only imagine what you have been through these past couple of years. Really pleased to hear that you found @Jane’s advice helpful and reassuring. I do hope it reminds you that you’re certainly not alone in what you’ve been through and what you’re still experiencing.
You mention that you struggle with fatigue - we have a few conversations on here about that which you might find helpful to read, and we also have this page on our website - https://bloodcancer.org.uk/support-for-you/living-well/fatigue/
How have you found the past few months?
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A bit bowled over by the lovely kind comments from Alica,Nichola and Alice , makes me teary !
All through my treatment and since I have been overwhelmed by the kindness shown by all the staff at the hospital and outside ! I had the most wonderful psychological support whilst in hospital and up until a year ago but sadly my psychologist moved away. Also, have a brilliant Clinical Specialist Nurse who has been supportive . COVID lockdown has been fine as I enjoy my own company and found lots to do at home ; blessed with a lovely home and garden . I did have support from 3 very close girlfriends and a friend who had AML 9 years ago and had a SCT but even with her it took me along time to chat with her about me ! I have done mindfulness for years and found that has helped enormously throughout but it is this ongoing fatigue which makes me feel “yeuk” ; achey and nausea , I have to go and lie down ! Thankyou soo much for all your replies.
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You’re more than welcome @Hellenjoy. That’s what this forum is all about. It’s sounds like you have so many amazing people around you which must really help you on your journey. I hope we can continue to be a support to you as well. It’s funny isn’t it, I also found it really hard to talk to people about me, especially family and some close friends. It just takes time doesn’t it. This journey has its ups and downs but a good support system is so important. I look forward to hearing from you again - only when you feel ready off course. I’m sure you’re experiences will be a great support to others as well X
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I’m organised like you @Erica. I’ve done my will and written down instructions for my funeral, disposal of my ashes and what I’d like done with any possessions not covered by the will. I’ve also got a crate with little presents for all of my friends and hand written notes to them.
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Oh, @Franko, your crate with presents in for all of your friends and handwritten notes sounds an absolutely lovely idea. So thoughtful.
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That’s such a lovely idea Franko! X
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@Nichola75 apologies for not replying sooner. I am doing well and turned another corner with my fatigue helped by doing a form of exercise called somatics ; neuromuscular retraining ! Which has been wonderful , I was a bit cynical at first as i can’t grasp the science but actually it has really,really helped . A bit stressed with a frail elderly Dad who has lost hi get up and go , given up which I find frustrating and does affect me but …it is his life and he has all his marbles ! One more bone marrow to go and then I will have made it to 2 years from end of chemo in remission. Thankyou for all your kindness .Helen x
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Hi Helen, it’s really great to hear how you are getting along onyour journey. Fatigue can be so debilitating can’t it so I’m really glad that has improved for you. Hopefully, when things improve, your dad will get a bit of his spark back, I hope so. In the meantime please take care. Here’s to your two years!!! X
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Hi @Hellenjoy, I am not familiar with somatics but it sounds it has been wonderful for you. Fatigue seems to have become just part of my life and I understand mine now.
It must be so difficult to watch your frail dad.
Let us know how your bone marrow goes and you really celebrate your 2 yrs from the end of chemo, spoil yourself.
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Im Jay , I was diagnosed last June 2021 with aggressive diffused B cell , non Hodgkin’s lymphoma which turned out to be Burkitt’s lymphoma , It came as a big shock , only people on this site will understand the impact it has on you , your life as you knew it is no more , I get emotional very easy , and sometimes it comes from no where , I’m still struggling at times with what’s next , what do I do now , where do I turn , the list goes on , this group has been great , I should use it more often , I find when I’m on a bad day I hide , I don’t want anyone to know I’m struggling but I should , or should pop on here , I’ve started a computer course so hopefully be able to use my laptop , which I can’t at the moment , everything is done on my phone , so baby steps , see what’s next for me
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Hi @Jay so much has happened to you in 9 mths and for me my emotions are also so near the surface and the anxiety is never far away.
I think you do brilliantly using a mobile phone on here all the time, I find the laptop is so much easier.
Yes, we certainly live a new normal now.
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