Hello Ann @Aabeaton. Welcome to the forum. I am sorry to hear of your diagnosis. It must have been a shock to initially be diagnosed with a mini-stroke, and then to find that you had a blood cancer. There is a section on the forum dedicated to Watch and Wait, where others in a similar situation to yourself have shared ways of how they manage. You are also welcome to start a topic.
There is patient information on the Bloodwise website which can be downloaded or requested as a hard copy at no cost to yourself. There is also a support line which can be contacted on Freephone 0808 2080 888 which operates Monday-Friday 10am-4pm, or email support@bloodwise.org.uk
Hello my name is Becky i have mantel cell lymphoma, diagnosed in February 2016,after 4mths of tests,from finding a lump in my armpit in Oct 2015,told to wait till after Christmas and then had a core biopsy done the pathologist didnt like what he saw and i had it removed from there they gave me the result. Im on watch and wait presently until they think i cant manage with it then strong chemo and a stem cell transplant at St Barts. It has been tough for my mum and husband, i remain upbeat and positive. Ive been told its treatable but incurable.
Thank you so much for sharing your experience with mantel cell lymphoma and talking honestly and openly about it with the forum. It sounds as though you’ve had a particularly tough time given your core biopsy and then the removal from your armpit. I cannot imagine how difficult it has been for you as well as for your husband and mother, but I am pleased though that you are remaining positive and upbeat after all you have went through. Becky, there are a few topic threads regarding watch and wait on the forum. It could be hugely valuable for people to hear your thoughts and insights into different aspects of watch and wait, so if you feel comfortable perhaps you could join the conversation or start your own topic regarding your experience?
Gosh, you must still be in shock, I know I was for many years so many thoughts and feelings whirring round inside me and in my head. I am on watch and wait but I think research, trials and treatments are coming on line so fast I am not worrying about the future, I am just trying to keep myself as fit and healthy as I can, but I also believe in treating myself to good things and goodies. I am glad you have joined the community forum, I find there are lots of interesting topics. Take care of yourself. Bloodwise is here for your husband and mum as well as you. Their Freephone support line is available Mon-Fri, 10am-4pm on 0808 2080 888.
I would like you everyone to welcome the newest members of the week, who are affected by blood cancer in some way, shape, or form. Please welcome the following;
Please welcome them with open arms and say a friendly ‘Hello’ to them. Also new members, please feel free to share your story to the online community and start having some conversations with one another. Once again, thank you so much for joining the online community forum and remember, you are in a safe space to share anything you would like.
I would love to welcome you all to the forum and I hope this post is doing so. I find this forum very informative, interesting and supportive and I hope you all will too.
Hi Carina @MissP143 We had a very good turnout at the Impact Day and if you look on the Bloodwise page FB there is a link to the video of the day, where you can hear the CEO of Bloodwise, researchers and Anna.
Hi
I’m Sarah, and nearly 60. I am nearly two years post Allogenic Male Sibling 10/10 match SCT at Kings in London. Prior to that I was on watch and wait for MDS, with transformation to AML in June 2016. The chemo and conditioning progressed me to full remission prior to the transplant. I started my re-immunisation program in February 2018 and have not looked back in terms of my progress and living of the life I’ve been given - travel, sports, grandchild. I have been very lucky so far in that, apart from a couple of DLIs last year, I have had no experience of needing any transfusions. I have not yet experienced GVHD and I have had only one hospital re-admission 3 months post transplant for a chest infection/pneumonia.
So why, do I feel the need to be on this forum as all is apparently so well, you may ask?
Well, I have, like many it seems, that fear of relapse and experiencing GVHD despite all the signs being to the contrary. I don’t know what I’m looking for, so any little symptom can set my mind racing. So being able to run concerns past fellow Bloodwisers is something I would value. Also, being part of a community which can potentially help those still on their treatment journey is something that I can put back into the system.
I am on a Facebook Group for those in the post transplant stage, but this doesn’t seem always to fit the bill for me.
Finally, I have been involved in some fundraising for Bloodwise. Again it’s something positive I can do for those who may go through the same journey as me in the future.
Hi Erica, I was diagnosed in early January 2018. To say I was in shock, is an understatement. I am also on the “watch and wait” I was beginning to think my being tired and feeling fatigued all the time was all in my head. I feel I am on an emotional roller coaster. I think joining this group may be a god send for me. Even though i know my lovely husband is here for me, I think it will be nice to talk to people who can relate to how i am feeling. Ann xx
Hi Ann, I agree with everything you say and I think just be kind to yourself and give yourself time, your world has been turned upside down both emotionally and physically. I also agree that it is nice to post with people who really understand what you are thinking and feeling, take care.
Hi Sarah, thanks for joining the forum, I find it supportive and I hope you will too. Sometimes it is the thoughts and feelings we all share although the diagnosis and treatment might be different. I have CLL and I have been lucky enough to be on watch and wait for nearly15 years, but I certainly know those feelings of fear you mention. Thank you so much for fundraising for Bloodwise. It really helps Bloodwise fund vital research, trials and treatments. I think we all passionately believe in supporting each other. If you do have any concerns or questions the Freephone Bloodwise support line is also there for you and is open Mon-Fri, 10am-4pm 0n 0808 2080 888. Take care
Thank you so much for sharing your experience with CLL with us and that you are currently on watch and wait. Our online community is growing and feel free to share any advice regarding watch and wait or about CLL.
Hi Jacqueline, I also have CLL. I was diagnosed in 2003 and have been lucky enough to be on watch and wait ever since. Be kind to yourself , if you were diagnosed with symptoms, without treatment, you are learning to live with the symptoms. My thoughts and emotions were very much still on high alert and I was looking at others behaviours and not my own. And as for my anxiety before medical appointments, well. There is more on watch and wait on this community forum. Take care.