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Why not introduce yourself to the Blood Cancer UK Online Community, and tell us a little about you?
Our support services are available on 0808 2080 888 Mon 10am - 7pm, Tues-Fri 10am-4pm and Saturday and Sundays 10am-1pm. You can also get in touch with us via email@example.com.
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Kate and I are part of the Support Services Team and we will be part of the forum community to help with any queries or concerns, and making sure this forum is a safe and secure place for those affected by blood cancer to share and connect.
Our support services are available via email firstname.lastname@example.org, or via our support line on 0808 2080 888 Mon to Fri 10am-4pm.
We look forward to hearing more about you so please do introduce yourselves!
And if as you browse the forum you don’t see a topic about something you’d like to talk about or give advice on, please start a new topic! Start the conversation!
I’m Katherine Sinfield. I live in Burton-On-Trent in Staffordshire. I was diagnosed with CML in April 2013 when I was 32. I started on imatinib but unfortunately the CML was at blast crisis phase and was behaving as AML. I am very grateful to have had a transplant from an unrelated donor from Germany (October 2013). I continue to take Nilotinib twice a day. I enjoy being an Ambassador for Bloodwise and raising awareness. I hope everyone is ok and have a lovely weekend.
My name is Anthony and I’m already on the Bloodwise site pre forum.
I wrote a blog about my difficulties in getting diagnosed with MDS RAEB2 it may still be on the site? I haven’t kept it up to date for a long time though.
On Monday I start my 47th monthly cycle of Azacitidine, still effective at the moment, Long may it continue.
No side effects that give me problems other than fatigue the first few days after the end of the cycle, that’s easy to cope with with adequate rest.
I’m on Azacitidine 5 days in every 28.
I’m being treated in the Cathedral Day Unit at Kent And Canterbury Hospital.
A superb team, I’ve been going there since January 2014 so I’ve got to know all the the people involved in my treatment and they have become friends.
I’m also on first name terms with a great many senior and junior members of the staff in other parts of the hospital.
Without being flippant I can honestly say that “ if you happen to be terminally ill, this is the place to be”
I consider myself very fortunate that Azacitidine works for me at present as I’m very much aware that that’s not the case for some.
I must admit to a bit of wallowing in self pity at times, but I keep that under control.
To quote Dylan Thomas “ I shall not go gently into the good night”
Winston Churchill( another great man) said “ we shall never surrender”
All of us stricken with blood cancer should remember these words!!
Hey some of you will know me from Bloodwise fundraising events but people who don’t here we go … I’m dan I’m 31 and live in sunny West Wales with my wife and 2 children, in January 2013 aged just 26 I was diagnosed with diffuse large B cell lymphoma stage 4 high grade which had spread to some of my bones. My pelvis in 3 places both sides, my 9th rib on my right side, my 6 rib on my left side, my lower lumber vertebra in my back and my skull leaving me with holes in these areas and in extreme pain and needing crutches to walk. 5 years on I’m still on crutches but in remission after 6 cycles of chemo.
I won’t put my full story to bore you all just yet but look forward to getting to know you all and if I can be any help to anyone please ask.
I’m also a patient ambassador for Bloodwise which was a proud moment being asked.
Hi everyone, My name is a Joan and a I was diagnosed with Multiple Myeloma in 2006. I had a stem cell transplant a year later and amazingly I have been in remission since. Unfortunately the cancer affected my kidneys and I am on dialysis. However I cope very well with this and do it at home each night whilst I sleep. I live a full life and my message is that keep positive and do what you can. I for example do tai chi and Zumba and I regularly go on holiday. Look forward to sharing with others in the forum.
I’m David. I was diagnosed with MGUS in 2011 which converted to Myeloma in 2015 when I was 66. Entered the Myeloma XI trial and responded well. After 4 cycles was put forward for stem cell transplant which took place in April 2016. Have been in remission since then although recently Para Proteins have reappeared so my consultant has increased the frequency of my clinic reviews so they can check the progress of the paraproteins and determine when and if further treatment should take place. A full blog of my experiences is available on the Bloodwise web site
Hi everyone, I’m Jane. I was diagnosed with AML in December 2014. I had 3 rounds of chemo and achieved remission in April 2015 however I relapsed in August 2015. At that point I was told I needed a transplant. I had 3 more rounds of chemo but i became resistant to chemo. I took an experimental drug, Sorafenib and then had an SCT with my sister as my donor. Fortunately it worked and I achieved remission 2.5 years ago. I now have some GVHD to deal with but I’m doing well. I am now a Bloodwise Ambassador, doing my bit to raise awareness and help raise funds in whatever ways I can.
I’m Christine, I’m 58, & was eventually, after 4 months, diagnosed with AML in April 2008. Usual 3 courses of the delightful chemo @ St. Richards Hospital, Chichester & luckily went into remission after first session. Unfortunately had a bit of a weird one where all chromosomes 6 & 9 decided to change places on the ribbon, so worst possible chances of it recurring. Best outcome requires a STC @ Southampton General Hospital.
Was a lucky one whose youngest brother was a brilliant match & almost 10 years later am sat here writing this!
Have lived my second life to the full & give back in the ways that I can, volunteeering for Macmillan @ Chichester to facilitate Look Good, Feel Better, @ a day a week in local charity shop.
Unfortunately my Mum has had Altzeimers for the last 5 years, which I’m sure my illness had something to do with as both my parents aged dramatically after I recovered & they relaxed.
It’s the ripples these cancers create that you’re unaware of at the time.
My husband was at my side throughout my treatment but when he got me to 3 years post all the goings on, he relaxed & had a minor breakdown.
I clung to the planet to watch my kids grow up. They were 21 & 18 at the time, & now I’m a grandparent to my son & his girlfriend & my daughter lives with her partner in London. My dreams for them all are coming true.
When I was deemed fit, myself & hubby started cruising & now we’re hooked! We’ve done around 15 cruises over the last 7 years but we’re fortunate that we can afford to.
Live your life to the full, & keep positive.
Diagnosed 2007 with CLL. Chlorambucil straight away. Then years of calm. About 4 years ago all kicked off again with sinus and eye problems. Monthly IVIG is now helping with that. Cycle 5 now on Ibrutinib.
My name is Erica and I was diagnosed with CLL in Dec 2003. How come so many of us seem to have been diagnosed near Christmas time? I have been lucky enough to have been on watch and wait every since, however as we all know if we had symptoms prior to diagnosis they do not go away. At diagnosis I felt in a bubble and went into shock, fear and anxiety, as did my family, friends and work. None of us understood what was going on, and I certainly could not explain it, initially I felt I wanted to pull the blood cancer out of me. I think we all felt that if I was not receiving treatment had I really got blood cancer? I remember one lovely friend offering me her redundancy money so I could have treatment. It has taken many years for my thoughts and feelings to subside although they immediately return before and during medical appointments. I have learnt to live with and manage my symptoms. My main symptoms are tiredness, fatigue, I do not deal with stress well, weight loss, unpredictable thermostat, hair loss, swollen lymph nodes etc. Over the years I have been diagnosed with severe osteoporosis, irregular heart beat, chronic kidney disease and skin cancer. I believe in trying to organise myself and keep my stress levels down and get as fit as I can, I believe in pilates and love my Zumba classes, I do not care what I look like now. I try to get a bit of fresh air and exercise every day, I try and eat a bit healthier, but I really believe in having a little nap sometimes and also treating myself, usually involving chocolate. I feel honoured and love being a Bloodwise ambassador and part of the Bloodwise family. I believe passionately is supporting others with blood cancer and their family, friends and carers.
My name is Joshua Poncil and I am the new Online Communities Services Coordinator.
I am part of the Bloodwise Forum community along with Kate and Dawn. This forum will be used as a safe space for anyone affected by blood cancer and to share their experiences.
If you require our support services, they are available via email email@example.com, or contact our support line on 0808 2080 888 Monday to Friday 10 AM to 4 PM.
I am looking foward to hearing your stories and getting everyone involved in the conversation.
Oh, Joshua I love the photo and you are also getting to grips with this brilliant site.
I’m Dick Morris; 74 years old, live north of Aberdeen and have been living with Essential Thrombocythemia, one of the Myeloproliferative Neoplasms, for the past five years. Treated with 1000mg daily hydroxycarbamide (hydroxyurea for those in the USA or professional chemists) plus 75mg aspirin and have been leading a perfectly normal life apart from brittle nails. Platelet numbers are higher than recommended, but the local haematology folk reckon that’s OK so far and any more aggressive treatment could push haemoglobin levels down too much.
Also have prostate cancer; was offered radiotherapy for that, but decided that the risk of it causing my MPN to mutate into something much nastier was not worth taking, so am currently just on hormone therapy. Love the hot flushes!
I retired from the Open University when I was 60 after a career researching and writing about things ecological/agricultural, and a couple of years ago found myself doing a final edit on the Bloodwise literature on the MPNs. Otherwise, spend my days managing a half acre garden, hillwalking, some cycling and bits of voluntary work.
Thank you for sharing your experience with us and being an Ambassador for Bloodwise. I am glad to be part of the team and happy to be working with everyone here to build a fantastic community! Explore the forum, join in a few conversations, and please let us know your thoughts and feedback!
Hello @Blackhat ,
Thank you for sharing your story. I did some digging and your previous blogs were still on the Bloodwise website. I was able to read all of them and I am amazed by your story and some of the difficulties you had to go through.
It also seems like you have an amazing team at Kent and Canterbury Hospital and they are taking care of you and very welcoming. Its’ nice you even made friends with them!
Dylan Thomas is one of my favourite writers and his famous poem “Do Not Go Gentle Into That Good Night” is a classic for me. I always used writing and reading as a way to relax.
| look forward to reading more of your posts on here in the future.
Welcome to the Bloodwise Forum. I hope you are finding the website easy to manage and maneuver. I was wondering if you had any advice on the Impact on children/family after going though your ordeal?
Thank you for sharing your story with us! I am very impressed with your story and would love to know more about the stem cell transplant you had in 2006. Do you have any advice to share? any information added in the thread would be great! you can find it here: Stem Cell Transplant.
A post was merged into an existing topic: Having a stem cell transplant
Thank you for sharing your experience with us within the safe space of the forum. It sounds like you are managing your life with Essential Thrombocythemia and it hasn’t taken your charisma away
In your spare time since being diagnosed, how did you get involved with activities such as gardening, hill-walking, and cycling? Could you offer advice on places or community groups that got you involved? I know some people would appreciate the information in the living with blood cancer section of the forum.