I would like 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 āHelloā 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.
Yes getting used the a new normal has been one of the hardest things for me tooā¦ there is no easy answer but you are not the only one, a lot of us have been struggling with this but we are often discussing it so hopefully you will feel more at ease about it.
Welcome @NEW1776@JWL123@Robson@AliceS@Jude1@Ange@jj631@Tractor@Nichola75 to the forum.
I hope you find some helpful topics with answers here and if you donāt feel free to create your ownā¦ if there is something in particular pls create a new threadā¦ and if you need help with anything please comment here
Hi, lovely to meet you. Itās easier knowing my feelings are normal instead of me feeling like I should get a grip and sort myself out! How long did it take you to adjust to a new normal or are you not there yet? X
Oh please do not be hard on yourselfā¦ it is life changing and it is ok not to be okā¦ once I accepted this I found it a lot easier to deal with. Itās three years since I finished treatment and I am still adjusting, it does get easier but it takes a lot of adjusting, changes to your life and talking to others who truly understand. How long since your diagnosis?
I have found that being proactive and finding out all of the facts about my situation helpful as I feel in control that way and keeping up to date with the research thats going helps me feel more positive about it too.
Is there anything in particular you find hard
Hi. I was diagnosed January 2017. I think the most difficult bit is knowing that itās inside me and growing. I feel like Iām waiting for it to catch me! I feel totally out of control and thatās the hardest thing. Have a PET scan in snatch. I expect a lot from myself and constantly remind myself people are worse off which I know isnāt effective in helping me deal with my needs. Itās just all so very hard. I just feel like itās happening to somebody else and then all of s sudden reality kicks in and panic mode starts! I agree being proactive is good and I do read a lot and that gives a little bit of control back.
Hi Nichola, I was diagnosed with CLL in 2003 and just reading your post the thoughts and feelings that you describe came whizzing straight back to me. I can remember feeling in a bubble and this urge to pull the CLL out of my body. I thought I had a life that was planned out and suddenly I was completely out of control. The symptoms I was diagnosed with, especially the fatigue, felt overwhelming and in time I realised my fatigue either set in immediately or up to 48hrs after I had overdone it either emotionally or physically and I do not deal with what personally stresses me well now, I now manage my symptoms. It took me a very long time for my thoughts and emotions to calm down. It does feel surreal. However what I have realised is that I want to enjoy my life and to do what I want to do and spend time with family and friends that are special to me. Be kind to yourself and keep posting.
Everything you have said here is the same as I have feltā¦ control is very important isnāt it. Think its because we have no control over this cancer so its finding other ways to take control backā¦ if that makes sense?
My name is Jess and about 12 days ago, I was diagnosed with Chronic Myeloid Leukaemia. I am only 24 years old so it has come as a bit of a shockā¦Iām facing this with as much positivity as possible, but it is hard none the less! I donāt know if there is anyone else here with newly diagnosed CML but it would be great to know if there wasā¦my understanding is that it is a relatively rare cancer so I havenāt come across anyone who has also been diagnosed recently!
Hi, I do not have CML, I have CLL and I am older than you, but I am sure you will find people on this site or on the Bloodwise Facebook site who do have CML. However I sense your fear and anxiety because I had the same, you have had a life changing diagnosis, life is suddenly out of your control. What I have found on this site is what we do all seem to share is the fears, thoughts and feelings. !2 days ago is so recent you must be in complete shock, the freephone Bloodwise support line details are above if you would like to talk to someone. Please just give yourself time and be kind to yourself and keep posting we are all here for you.
Hi Alfie, thanks for introducing yourself. What I have found on this site is, as you say, everyone is very special and unique and no matter what our diagnosis is we all seem to share the same fears, thoughts and feelings. Keep making the happy memories and what is it like having such a rare form of blood cancer?
Hi,
Iām a mum of a daughter who was diagnosed with ALL in may, she is 30, has an 11month old daughter, and she has had a stem cell transplant in October with her sister as an identical match,even same blood group. It was a shock as it was caught by chance when she had a blood test for something else, she was in remission after the first two lots of chemo but given her age and health it was decided to go for the transplant as a cure so hereās hoping.
I thought I would join just as a mum as even though I donāt have leukaemia or anything, it does affect the whole family and we all try to stay strong for Katy when sometimes we donāt feel like it.
Judith