Hello @Merlinslaney and welcome to the forum, Iâm Anna and Iâ'm in remission from AML, which doesnât mean that we wonât have a lot in common! Have you been finding anything in particular here helpful?
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Hiya I did the last one ripping up the âred card of doomâ! I was terrified of getting sepsis during the treatment so took great pleasure chucking that away once my immune system recovered! Iâve been charting my hair growth which will be the next and probably last one HL related! https://steemit.com/cancer/@knight-angel/icm86jie
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Thanks for posting with your blog, there is so much on this site that I hope to hear more about your thoughts and experiences.
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My younger sister died 3 weeks after diagnosis from ALL. She was 49. We were close having supported each other through the illness and deaths of all the rest of the immediate family.
So what could I do?
At her funeral I suggested that anyone eligible could become blood donors.
I looked at the ways in which I could support Leukaemia Research in her name. I am definitely not the sporty type, so do not fit into the excellent fundraising programme. I was already making jewellery and decided to sell it locally. I started making pottery and sell that too. Many years later my friends and I have raised over ÂŁ40,000.
Luckily when I at first felt that there was nothing I could do I found that selling in Wallingford Local Producers Market, our Craft Market in Little Milton and at other local events brings a great feeling of community with other crafters and Producers.
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Hi Im Rita, My husband Dave had a tumour removed from his testicle early March, thinking it was Testicular Cancer, but was diagnosed end of March with Large B Cell NHL. He has just completed his 6 cycles of RCHOP Chemo at Wigan Christies Hospital along with 4 x lumbar punctures at Christies, Manchester. Last week he had a PET Scan to see the effects of Chemo, and we go to see his consultant on Monday, next week, 1st Oct, for the results. We have everything crossed for goodnews, but the waiting, is getting to us and causing sleepless nights just now. Thank you for adding us to the Forum
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Hi. Iâm Ian and my 18yr old son Tom has recently been diagnosed with ALL. He is one week into his chemo therapy at The Christie in Manchester. It been a hard couple of weeks since he was diagnosed. Coming to terms with his condition and all that is going to happen has been difficult but I have realised I have an amazing son who has taken it in his stride and will fight this condition and come through the other side. Chemo has started and he is tired and slightly sick and the muscle pain is difficult for him. The Christie is an amazing hospital and he is being looked after by an amazing team of doctors, nurses and admin staff. He has another 3 weeks in here and then a long road ahead of therapy and the plan is for him to start medicine at Manchster Uni next September.
Please follow his instagram page @tomhuntsleuks. His brother has already raised ÂŁ6500 for the teenage cancer trust which is amazing. My wife Andrea and I have been blow away by the support from friends and family with the help we have been offered.
Regards
Ian
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Hi Maggie, I am not a natural fundraiser either, but I think you have certainly proven that you can fundraise in different innovate ways. ÂŁ40,000 is a wonderful amount, thanks so much and please thank all your friends. It would be great to hear more about your fundraising experiences?
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Hi Laurita, I would expect you are all still in shock and as for the waiting, my mind just goes into overdrive with fears, thoughts and feelings. Yes, I think sleepless nights are natural, but perhaps that does not help your well being. Hang in there and please keep us posted next week and keep posting because I think so many people will relate to you. I find this site very supportive.
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Hi Ian, you must all still be in shock. I remember my fears, thoughts and feelings were on high alert and overdrive for absolutely ages. Family members are the unsung heroes and wider family and friends can be priceless. Please thank your other son for fundraising ÂŁ6,500, wow. All you can be is there for your son when he wants and needs you. Please keep posting because I think so many people will relate to you, we all support each other.
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Hi there, thanks for the reply. Yes, once we have been back to the consultant on Monday, I will confirm how we have gone on, and what our next steps are Thanks again Rita
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Apologies for calling you Laurita instead of Rita.
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Erica, Laurita is my full name, I get called both names, so no worries x
Rita x
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Hello forum members!
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;
@wabbly
@LAK
@Nanacook
@kelly78
@RobW
@MaggieforBloodwise
@AniaG
@Lisa
@Ali-Gills
@Ianrhunt
@Bloaty
@Husain
@Carol
@Helene35
@Jenji
@Mhairi
Please welcome them with open arms and say a friendly âHelloâ 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
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Hi everyone, my name is Lisa 
I was diagnosed with acute myeloid leukaemia in August 2015 after a visit to the doctors as I was feeling ârundownâ I was prescribed a course of anti depressants but just happened to ask if I could have some blood tests done as I was suffering with recurring mouth ulcers and had been for some time. Three days later I had the blood tests and that night received a phone call telling me to go straight to my local hospital 
It took 3 weeks, lots of blood tests, scans, cameras, and eventually a bone marrow biopsy to receive my AML diagnosis ⌠my world was turned upside down âŚI was launched into a world that I didnât know existed, 3 rounds of intensive chemo, a transplant and everything that comes with it. Three years on I feel extremely lucky and try to live life to the full but I still suffer with what I call PTSD and fear of remission which I try my hardest to suppress. On a positive note I now have a little German family, my donor Marc is my real life hero, we met for the first time in March when he came to visit and my husband and I are flying to Germany on Monday, hope I havenât gone on too much but thatâs my story in a nutshell 
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Hi Everyone, My name is Erica and I was diagnosed with Chronic Lymphocytic Leukaemia in 2003 and I have been lucky enough to have been on watch and wait ever since. I hope you find this community forum supportive and informative. I look forward to hearing more about each of you?
Hi Lisa, as you can see I have not been through the traumatic things you have but I really relate to âmy world was turned upside downâ and being launched into a world I did not know existed (it sounds like Dr Who!!). How special to have your little German family. You certainly did not go on too much. Enjoy your trip, thank Marc from me, he is a wonderful person, and I look forward to reading all about it.
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Hi everyone
I am not sure where to put this first post but maybe someone out there has lymphoma that affects the skin. I do not have a diagnosis but last November with high lymphocytes and other markers I saw the haematologist who said a bone marrow biopsy may be needed at some point. At the time I was going through other gynae things that had to be dealt with and I put all the blood stuff on the back burner. Since I have recovered from surgery my GP has referred me again as some more bloods showed raised lymphocytes and I am extremely fatigued, have an ongoing burning rash on my chest and neck, small lymph nodes on each side of my neck and a very high IgE. My feeling is that this could be cutaneous lymphoma but in some ways I just want the symptoms to go away or be explained in a less serious way.
The consultant is going to look at the latest marker tests from the specialist lab on Monday when he is back from holiday as they were not sent to my GP. I just want to get to see him so that I know what is going on.
Any advice from anyone even at this stage before I have a diagnosis?
Thank you in advance
Jenji
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Hi Jenji, I felt some of your post could have been me, a yukky feeling in my stomach came back and I can see the office in which I was diagnosed as if I was looking down on the appointment now⌠14 yrs ago I had gynae problems and a small op, I recovered from the op, but felt so, so rough, I did not know what fatigue meant at that point. The gynae consultant ordered blood tests and when I went back he said âI have never had to tell anyone this before but you have Chronic Lymphocytic Leukaemia, I cannot do any more for you, go back to your GPâ, needless to say I felt my days were numbered. Before I knew it I was outside his office. I remember a nurse coming after me and asking if I was OK and of course I said âyesâ. Anyway I remember that fear, anxiety and my racing thoughts and feelings before I saw my GP (who had just been on a haematology course!!) who again ordered blood tests and I was lucky enough to be put on watch and wait or active monitoring and I am lucky enough to still not have had any treatment 14yrs later. That does not mean the symptoms have gone away, I have just, over time, learnt to manage them. My heightened thoughts and feelings were on high alert for a very long time after diagnosis and as you can see in posts above, âmy world was turned upside downâ. My advice is that the not knowing is the worst time in the world and my head goes off in all directions with thoughts and feelings, please try and look after yourself. I find this community forum very supportive and informative, you are not alone, I hope you will find it helpful too. Please do let us know how you get on?
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Hi Erica, much thanks for your reply which has really helped this morning. I havenât yet told my family (3 grown up with families) except my sister, what is going on because of all they had to put up with this last year with the gynae stuffâŚbut I can feel that I will not be able to hold on to it for much longer. If it comes to a bond marrow biopsy I will have to tell them. I am scared of that as from what I read it is very painful afterwards. Did you have one I wonder.
Thanks again
Jenji
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Hi Jenji, I have found that those close to me can sense when there is something wrong and their imaginings are worse that the facts. I have not had a bone marrow biopsy, it wasnât usual in 2003 at my stage. I think you hear all sorts of things about the procedure and I have found telling the medical people I am scared and my fears means they know better how to proceed. I also find taking someone supportive and helpful with me helps, just to be there, talk with me and get me home. I also find writing a list of questions and my fears helps so I do not forget to ask anything, which I do when I am stressed.
I definitely do not deal with what personally stresses me well now. Take care and we await hearing how you are getting on.
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