New here? Feel free to introduce yourself here 👋

@JoshuaBloodwise @Blackhat I’m not one for reading myself but noticed you mentioned “Dylan Thomas “ I’m guessing you mean the welsh poet ?? If so I used to live In Laugharne where he did most of his writing and lived some of his life along with where he is buried. It’s a lovely walk along the top looking at his writing shed and the boathouse.
I’ve moved now to a bungalow due to my mobility issues but am only 5 mins away from Laugharne.

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My husband has done the Ride London a few times, I have taken up the role as official photographer!!
Would be happy to help if we can? Do you do any cycling at the moment?
IMG_6610

Regards Anna

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Anna, you take some stunning photos.

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I’m Jude and I’m 43. My husband aaa diagnosed with a particularly rare form of NHL called SMZL on 27.11.15. He was critically ill at the time and it was expected that he’d die before Christmas. 2.5yrs down the line and he’s still here. He has now finished treatment which was ongoing for all that time - he has not achieved remission. Staff have not treated someone with his condition before so they tell us regularly they don’t know what they’re doing or what will happen - it never inspires much confidence I’ll be honest.
We have faced this challenge with all the stength, focus and determination we have and we do all we can to ensure our young son understands what is going on. We have fought and fought for 2.5 yrs, raised over £25k (I ran the London Marathon this year for Bloodwise and raised almost £20k!) and do all we can to make our situation count in the long term. Both my husband and I are very proud to be Bloodwise Ambassadors

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Hi,
My eldest son was 17 when he was diagnosed with Acute Lymphoblastic Leukaemia with a rare mutation. He was coming to the end of his A level exams and we had put his tiredness and lethargy down to this, and the fact that my brother had suddenly passed away a couple of weeks before. We were all struggling! As it was a Sunday, he seemed so very pale and tired and took him to urgent care at our local hospital, expecting he may need some iron tablets, but wanting to get him checked over before his last few exams. We were sent to another hospital and then I was told it was likely he had Leukaemia and was red lighted to The Christie hospital within the hour! He was diagnosed that night and treatment and blood transfusions started that night. He stayed as an in patient for a total of 15 weeks and I stayed with him whilst my husband and family and friends took care of my younger three children at home. My son failed induction dramatically and they then found out he had a rare mutation. We had a difficult couple of weeks where his chances were uncertain, he received his A level results and an offer for medical school and turned 18 in this time in hospital and couldn’t celebrate. When his doctor found that a targeted drug might work, we continued on with aggressive treatment but told he would need a stem cell transplant as soon as he would get to remission. They tested his 16 year old brother to see if he was a match for transplant, and we were very lucky that he was and on 1st December, my eldest started very gruelling chemo and radiotherapy called conditioning and my second eldest started on his injections to boost the number of stem cells. They harvested his stem cells in a six hour procedure and they were infused to his brother on the next day. It was a tough road, my son had sepsis from pneumonia three times and he was very sick before Christmas, but Christmas Eve he turned a corner and his cells showed signs that a graft was taking place. We left hospital on New Years Eve, and he rang the bell to signify the end of treatment. He still is being looked after closely and has had mild GVHD( graft versus host disease) but he is doing ok, and for him life is getting back to normal. He gets to go to Medical school in 4 weeks! I’m so very proud of him, but so terrified at the same time. Letting your child leave Home is hard enough, but when he has been so ill, it’s tearing me apart. I don’t let him see this though! We have been told, that there is 40% chance the cancer will come back, and I’m not really dealing with everything that’s happened in the last year! I’m struggling moving forward, my son is doing so well and very positive and excited for his future. I wish I could have the same attitude!

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Hello @judesadventures,

Thank you for sharing your experience with your husbands rare form of NHL called SMZL within the forum. You informed us that you had a son you kept involved in the process. I was wondering if you could share your experience about telling children about a diagnosis in the topic thread. I think some people in our community could you use some of your valuable advice.

Hello @hlb,

Thank you so much for sharing your experience around your eldest son’s acute lymphoblastic leukaemia and talking so honestly about how you’ve been feeling throughout. Even though your son is about to take a fantastic step forward in his life going to medical school, I cannot imagine how stressful the situation has been for you, and continues to be. Have you had access to any counselling or support services that have helped at all? I doubt you are alone in your struggle to move forward, and I imagine this may resonate with many carers who join our community. Perhaps it would be helpful for you to open up this conversation within the ‘Caring for someone with blood cancer’ section on the forum so other people can begin talking about how they’ve experienced and coped with similar feelings too?

@hlb If you would find it helpful to talk with a blood cancer support specialist either now or in the future, you are very welcome to get in touch via email support@bloodwise.org.uk, or via our Support Line on 0808 2080 888 (Mon to Fri 10am-4pm).

Hi everyone was diagnosed with myelofibrosis this time last year after various other illnesses. I’m 46 years of age single mum with two kids. I’ve been on ruxolitinib now for three months and so far doing well. I found it tough in that there wasn’t any local groups in my area for support. It feels like a lonely place to be at times but I’ve learnt to live your life as best you can. Thanks to friends family and bloodwise things don’t feel as lonely x

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Hi Jude, great to hear from you and this site is exciting isn’t it.

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Hi, thank you so much for introducing yourself and telling how your whole family have been affected by blood cancer. I am not surprised you are not dealing with everything that happened to you last year. I know I struggle with bereavement, shock and anxiety and it takes me a long, long while to take it all in and come to grips with it, let alone starting to move forward. I also found that the person who went through treatment moved forward a lot quicker than me. My mind can be like a washing machine with all my thoughts and fears whizzing around in it. I hope you find this site supportive and you can always write posts yourself if you have questions. So all that helped me was time and the most difficult one - be kind to myself. Take care of yourself.

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Hi Dawn, it is great you have found this on-line community and I hope you find it supportive and informative. You can always write a post if you have any questions. There are a couple of posts about feeling in a lonely place, I know I really felt the only person in the world in my situation and I was not a single mum responsible for two kids. You certainly know who your friends are, but that sometimes I found that does not take that lonely feeling away. If you would find it helpful to talk with a blood cancer support specialist either now or in the future, you are very welcome to get in touch via email on support@bloodwise.org.uk or via our Support Line on 0808 2080 888 (Mon to Fri 10am-4pm). Take care of yourself and give yourself time you have had a lot on your plate over a short period of time.

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Hi Jude. I am sure that you will be able to help many others with your experiences, and I also hope that this is a place where you can find additional support when needed

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Hi Dawnieb. I hope that you will find answers to questions you may have and additional support when needed in the forum. I hope you continue to do well

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Hello @Dawnieb

Thank you so much for sharing your experience and I’m pleased to hear you’re doing well so far on your ruxolitinib. I’m glad to hear you’re not feeling as lonely a few months on thanks to friends, family and your connection to Bloodwise and as @Erica says, please do get in touch with us if we can help at all. Perhaps you’d like to join the conversation within the ‘newly diagnosed’ section of the forum in order to connect with others who may have be going through, or been through, similar circumstances?

Hi, I’m new to the Forum. Six and a half years ‘watching and waiting’ with CLL and finding fatigue particularly disruptive to my daily life. Look forward to seeing this Forum develop further. Kindest regards to all.

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Hi
My name is Yvonne and I am 57 years old. Back in 2014 I was diagnosed with MGUS and monitored every 3-6 months and came to terms with this. However following a further bone marrow biopsy last September was told that I have now progressed to Smouldering Myeloma. My consultant has said I will more than likely progress to active myeloma at some point although not able to say when. It’s been a difficult year mentally but I am being monitored every 3 months so feel reassured by this. I also am supported by myeloma nurses . I am okay most of the time but feel nervous round blood test time in case anything has changed and treatment needs to be started. I have great support from my husband Steve and my 2 sons and daughters-in-law. I love reading so that is my main escape mentally. We are having a family holiday abroad soon in Crete so that is something to look forward to . I realise that I have just got to carry on and make the most of life and a cancer diagnosis certainly makes you realise what is important .

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Thank you everyone for replying I joined the buddy system initially but not heard from her in while and didn’t like to pester in case they weren’t too good. I certainly did know who my friends are but hey there loss x

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Hello @Sandy You may like to have a look at a couple of topics on the forum, especially the thread ‘What helps you cope?’ which touches on fatigue, and there is also a section on Watch and Wait. I hope you find the forum useful

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Hi @Yvonne. I am pleased that you are getting support from Myeloma nurses, and getting regular monitoring. I don’t know whether you might find some useful threads in the Watch and Wait section, or would like to start a thread? Even 10 years on I still worry about blood tests, so you are not alone there. You are right in saying that a cancer diagnosis makes you realise what is important. and I hope you enjoy your family holiday in Crete. It has special memories for me as I came home 28years ago with an extra passenger, unknown to me! Also you can get in touch with the support line if you need to talk to somebody. The Freephone number is 0808 208 0888 (Mon-Fri 10am-4pm)

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Hi Sandy, welcome to the forum, I think it is exciting how it is evolving and the interesting, informative posts.
Yes, I am also on watch and wait with CLL and people do not realise that because you have not had any form of treatment you still have the symptoms you were diagnosed with. I have written about my fatigue and how I manage it daily.
Take care

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