Gosh, Leanne, I am completely speechless, what a beautifully written blog, so honest and poignant. You are going to be such an asset to this community, please keep writing your posts, I will certainly be reading them. You have gone through so much, so quickly, take lots of care of yourself, you and your body must be exhausted, oh, and also be kind to yourself.
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Hi everyone
Thank you for letting me join your forum. In April 2013 our lives changed forever, I had noticed my Husband Roger losing weight, but still eating okay, he was sleeping all the time. He was already prone to nose bleeds due to polyps but they were getting worse and more frequent, we went away at the end of Feb and actually spent one eve at Bangor Hospital because he lost a large clot and it wouldnāt stop bleeding. Un beknown to us, this was the start of the downward slide.
Onthe 23rd of April he went to have some bloods done, then went to work his 2-10pm shift, but later that day we got a phone call from the doctors to say we had to go in. The doctors face and tears in his eyes said everything, he told us he didnāt know what it was but it wasnāt good, so they arranged lots of tests for Roger and by the 16th of May we had the diagnosis. They told us he had AML and he was admitted to hospital the day after. 10 daysprevioys to this we got a new grandson, and already had Olivia who was nearly 5 at the time. We was all in shock. Because his treatment wasnāt starting until after the weekend they allowed him home on the Sunday for a few hours, and we got a gorgeous photo of him with Olivia and Harry.
Anyway he started his chemo, but it didnāt work, so he started the vidaza injections, we nearly lost him in the July but he came back from that, but I knew deep in my heart he was slipping away from us. The following April we had the dreaded chat with him it was onthe 3rd of April, his consultant told him, they couldnāt do anymore, and still he thought everything was going to be ok, I said āRoger, there saying itās quality now not quantityā, he said āits ok babe we will get through thisā but after looking at our daughter he knew what they was saying, so he told them well I want to be home for tomorrow its our wedding anniversary and it was my birthday too. The hospital pulled out all the stops and he got his wish he came home. He was home just 19 days, and exactly a year to the day fromthe first blood test Roger passed away at 9.15pm on the 23rd of April 2014.
To top it all it was our Daughter Amyās wedding day. She had planned to get married in 2015 but once she realised dad wouldnāt be here to walk her down the aisle they came to talk with us and said what would we think if they got married in Cyprus on a holiday they already had booked, Roger just said āgo and make me proudā he took his wedding ring off and gave it to Glen and said āhere you wonāt have time to get oneā
So on that day, they got married in the morning, rung home in the afternoon and he slipped away that eve. We have struggled since, and I feel the longer it goes by the harder Iām finding it to accept its all a dream and heās going to walk through the door asking āwhatās for teaā ?
Since we lost him we make and release little yellow ducks #littleyellowduckproject and we have a charity bear who wears a t shirt saying give blood save a life and she has her own Facebook page #Roannebearforblood
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Thank you for joining our community forum and introducing yourself. You have been through so much in such a short space of time I am not surprised you are all struggling, you must really miss Roger. Anniversaries must be so difficult for you all. The Bloodwise Freephone Support Line is available Mon - Fri, 10am - 4pm on 0808 2080 888. I find this forum also has a variety of interesting and informative posts.
Take lots of care of yourself.
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Hi Erica
Thank you for that, the Anniversaries have been hard esp as we want to mark Rogers, Anniversary but want to make the wedding Anniversary special too. To make matters worse I lost my mum to Lung cancer within 5 weeks she was gone. Not sure if Iāve grieved for her yet. Donāt know if my tears are for her, for Roger or for both of them.
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Hi @RachelL. The QE is an excellent hospital and also a centre of excellence as far as research into blood cancers is concerned. Your son and yourself may be interested in attending the Impact Day in Birmingham on Sept 15th. You have a chance to meet people affected by blood cancers, and to hear about some of the latest research. A free lunch is also included! More details can be found on Bloodwise site and FB page.
I can also empathise with your feelings when other friends in a similar situation die. I will never forget a young lady who was on the same path as me, same consultant, and we even ended up having our PET scan in adjoining rooms. I was so angry when she died as she was young, and I was much older.
Best wishes for your sonās recovery and to friends and family
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Hi Linda @Mazda626. You have certainly had a lot to deal with. As Erica has said, please do get in touch with the support line (They will be closed for the Bank Holiday) if you need information or just someone to talk to. You may find some topics in the forum which may make you feel less alone. There are topics about diet, exercise, dealing with anxiety and fatigue. Feel free to start a topic if you cannot find what you want here. Even though each of our stories is different, fatigue is a common thread for most of us.
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Hi Fiona @f33b3377 I can understand your reluctance to look into your blood cancer on the web as it is difficult to sort the good information from the bad. However if you go onto the Bloodwise Connect site www.bloodcancerconnect.org.uk there is information from trusted cancer charities and organisations. You can also obtain patient information written by healthcare professionals and reviewed by nurses and patients, by PDF download www.bloodwise.org.uk/info-support/patient-information-publications or also available by order by post for free. You can then look at information when you are ready to. Best wishes
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Hi, My name is Paula.
10 years ago my husband was diagnosed with ALL with Philadelphia chromosome.
After 2 x lots of gruelling chemo my hubby was in remission & then was able to proceed with a stem cell transplant.
Nick is well, back working & living life to the full, but he does suffer a lot with gvhd.
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āHello @Pjgym,
Welcome to the online forum and thank you for sharing your husbands experience with ALL. I am pleased to hear your husband is in remission after intense chemo and was able to proceed with a stem cell transplant and that he is doing well. Even though you both are well and living life to the full, I can imagine that living with GVHD is still very difficult. I wondered if you would be happy to share any insights, thoughts or feelings you may have about your husbandās Graft versus Host disease as other peopleās experiences are hugely valuable for your fellow members of the community who are currently dealing with similar issues. Would you be interested in sharing something here āliving with and after blood cancerā?
Hi all,
My name is David, I was diagnosed last July with Hairy Cell Leukaemia. I had just completed treatment and a a couple of weeks in hospital this time last year. Doing fine now, in clinical remission since January.
I blogged about my experiences here : http://www.dmq-online.net/category/leukaemia/
Proudly wear the Bloodwise cycling shirt when out on the roads, having rode and raised funds this year in the RideLondon.
David
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Welcome to the group @dmquinlan So pleased that you are in remission and thank you for raising awareness and doing Ride London. What an amazing achievement
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Hi Paula, thanks so much for introducing yourself and welcome to the community forum, Nick and you have been through a lot and I hope you find the topics and posts on this site interesting and informative. Yes, live life to the full and take care of yourselves.
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Hi David, welcome to the community forum and thanks so much for introducing yourself and what an achievement doing the Ride London. I always think that as well as raising much needed funds to enable Bloodwise to fund more clinical trials and research that you are a cycling billboard advertising Bloodwise.
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6 posts were split to a new topic: Rare cancer mutation
Hi Iām Chris from Birmingham.
I was diagnosed with Hodgkin lymphoma at the start of the year.
Complete shocker as I hadnāt had any symptoms- or so I thought. I went for a general check up and to cut a long story short went for a biopsy. Once I had the diagnosis and the benefit of hindsight then things made sense. Tiredness - no it wasnāt me just getting older! Pain in the chest - no itās not a bad case of Indigestion! Night sweat - no it wasnāt because I was wrapped up to much in the duvet! Coughing - no Iām not ā yes you are in your sleep a lotā !
I finished Chemo 7 weeks ago.
I was in complete remission half way through treatment. I see my consultant next week - Iāve just had my post treatment scan a couple of weeks ago.
Iām looking forward to getting back to the things I did before treatment - going out and about with my partner Deb and back to riding horses and jousting, this illness has been most inconvenient!
Iāve vlogged my journey which helped, Iām not quite finished yet as Iām doing the hair growing back bit now!
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Hello everyone, my name is Carina. I wanted to say thank you to Bloodwise for an inspirational Impact Day yāday in London. It was an emotional rollercoaster of a day, incredibly informative, and strengthened my resolve to get actively involved going frwd. I was DX with hairy cell leukaemia June 2017, 80-90% bone marrow infiltration, and I have been in clinical remission since Nov 2017. I tolerated chemo pretty well and to be honest it wasnāt until I started to feel better that I really appreciated how awful I had felt pre DX. I still have days of worry, particularly when the fatigue closes in, feel frustrated that my blood counts are no better now than they were since last Nov, fret about when relapse will occur, but mostly I feel fortunate, as I know others have had a horrendous journey compared to mine.
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Hi, my name is Ann. I was diagnosed with CLL at the beginning of this year. To say it was a shock is an understatement. In December 2017 I had a funny episode at work. I attended my GP who referred me to the TIA clinic at my local hospital, where the consultant diagnosed a mini stroke. It was from bloods taken at this clinic, that the CLL was discovered. I am on watch and wait.
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Hi @Chrisbx515. I live near Birmingham and was diagnosed with Hodgkins Lymphoma in Nov 2007. I had a tricky journey (lots of symptoms but a long time to diagnose) but Birmingham is one of the best places to be as the haematologists in the different hospitals do talk to each other.
There is an Impact Day in Birmingham at the University on Saturday where researchers, patients and family get to meet. One of our ambassadors and some of the researchers are talking, as well as a chance to meet the CEO of Bloodwise. If you want more details get in touch hello@news.bloodwise.org.uk
Wishing you all the best for your continuing recovery
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Hello Carina @MissP143. I am so pleased you enjoyed the Impact Day in London. I am looking forward to going to the one in Birmingham this Saturday and meeting up with some of my Bloodwise family. This will be my 3rd Impact Day, and will be more relaxed this year as I was speaking last year.
I am afraid I am ignorant about your form of blood cancer, but there are many things you have in common with most peopleā¦the fatigue, worry before any tests or appointments with consultants, fear of relapse. Do not think that you have suffered any less than somebody else. I used to think that, until I saw peoplesā reaction when I talked about what I went through.
Please look through the topics to see if there is anything that might help you, or start another conversation if you need help about something not posted. You will soon find that you are not alone. Glad to have you on board
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Thank you Iāll get in touch
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