Anniversary dates - the day you were diagnosed, the day you started or finished treatment, the day you were discharged from hospital after a stem cell transplant… are these dates you remember or mark in any way? Do you find them upsetting or challenging days?
Do you have any stories or advice to share around this? Does it get any easier?
I remember the date I was finally diagnosed as that day I finally met two consultants who realised how poorly I was, one of which operated on me 5 days later, saving my life. I also remember the date I had my SCT as it was the day before my birthday. I remember those dates and give thanks for the many consultants and teams that got me to where I am now
Hi Dawn, I, spookily like many others I have heard about, was diagnosed just before Christmas. Every year I give thanks that I am lucky enough to be here and enjoying life. I usually have the odd treats and make my favourite meal of the moment and spend the day, as per usual, but in a quieter contemplative way. I also remember those who are not as fortunate as me or are no longer with us. Later in the day I remember the things I have to be grateful for since diagnosis like the fact that I have got to know myself so much better, I am far less materialistic, I don’t go through life on autopilot now, I appreciate my family, friends, nature, music etc. more, I know what is important to me now, I have learnt to say ‘No’, I have a supportive Bloodwise family around me now, I could go on and on.
It’s nearly one year since diagnosis and given everything that has happened to me I am surprised to still be here as the odds were very much not in my favour. It’s my birthday in mid July and I will be 56 ( that’s 39 in my head L.O.L ) I am trying to live month by month now, which is an improvement on day by day. I agree that life is much simpler now, and it’s easier to concentrate on things that bring you joy and the trivia of daily life has disappeared. Anniversaries can be good if you treat them as evidence that you are moving forward in a positive way, but obviously painful for the families of the people who sadly didn’t survive their blood cancer. As always sending my best wishes to all of you have helped me reach my first anniversary since diagnosis, you have all made a difference so thank you alfie
Hi Alfie, I really agree that anniversaries for relatives and friends of those who sadly did not make it can be so, so hard, thanks for making that point. I am glad to hear that instead of being 56 in July you will really be 39, I feel the same at 69 yrs old, another positive is that there are less candles to blow out on the cake. I think it is important that we share how we spend anniversaries on this site, and there is no right or wrong, but perhaps it gives us all ideas. I celebrate everything with a hot chocolate and my favourite Sainsbury’s shortbread.
Today is 2nd anniversary of the start of my journey to diagnosis,treatment and remission. It was phone appointment with my GP where I talked through my symptoms… Which lead to surgery appointment, referrals etc.
I guess it depends on how things have panned out for you in your own journey as to how you feel about anniversary dates. In remission and healthy, you look back with a certain perspective… I wouldn’t speculate what it is like to look back in other circumstances.
I use anniversary dates to raise awareness on social media to plug fundraising events… Which I have done today.
You have to remember that everyone’s journey is unique and be sensitive.
Thank you for raising awareness of blood cancers. It is true what you say about anniversaries, as birthdays and wedding anniversaries can bring mixed emotions if someone close has not made it. I know that reaching the first anniversary of my SCT was a big thing as it was not expected, and I was still struggling with thoughts of another relapse, and having anxiety attacks. Now, ten years on, I can look back and think of all the things that I have been lucky to see in my bonus years. Good luck in Ride London x
Hi, I remember the date I was given a diagnosis - 25May - but don’t mark it in any way. I am one of the lucky ones as it is 13 years since diagnosis and I’ve only had one lot of treatment. I had a big party on my 60th as I had not expected to reach that milestone but maybe in three years I’ll have another for my 70th! Joan
I received my official diagnosis on my wedding anniversary 21st August 2015 so I have some rather mixed emotions on that date, my SCT was the 2nd December the same year which I now celebrate each year with a meal out with my family…I was finally “released” on Christmas Eve I already loved Christmas but now there is a whole new reason to celebrate
I’m 10 yrs post transplant… I remember the day I was first admitted (July 4th 2009). I had relapsed AML (I first had AML in 2002) and was told that a stem cell match was the only chance. Whilst in hospital, I’ll always remember when the consultant and the nurses came to my bed to tell me that they’ve found a match. Stem cell transplant was in October 2009. I’ve had my ups and downs since, mainly dealing with fatigue and anxiety/depression. I privately feel somewhat emotional on anniversary days, especially as I know many patients that I met in hospital didn’t make it. It’s probably easy to say it gets better, but perhaps it’s down to the individual personality. Strangely I actually look forward to my check up (now yearly), I suppose it’s cos I like to see the staff again, and of course I can talk to my clinical nurse/consultant about whatever’s on my mind. They always find the time to listen.
Im 3yrs 4mths after diagnosis. I find it quite special that im still free and liberated from treatment still. It feels strangely like a birthday because i haven’t had treatment and another yr has gone by. It takes a while to get your head around watch and wait and i was diagnosed stage 4 straight away,when they say we’re not giving you treatment yet you feel traumatised and odd at the same time. Explaining to family and friends that your just monitoring yourself when your so far along in stages is hard and weary,this is where help is needed and more advice being publicly known. Sometimes you feel like a fraud because nobody else can see your disease, the pain your in and the chronic fatigue.
Welcome to the forum. Those check ups are so important as we are so used to the routine, but also there is still that little niggle until we get the all clear again. You will find many posts about fatigue and hopefully other articles which will interest you. Take care
Dear cliff, thank you so much for sharing your story, it’s so important to hear from anybody no matter how long they have been in remission. It helps us all put our own fears and anxieties into context and realise that having any kind of blood cancer leaves its mark and we should all be kinder to ourselves no matter what stage we are at. I think because blood cancer is so misunderstood by the general public that it’s almost hidden from view and can lead to patients to feel quite isolated and misunderstood. So I wish you all the best for the future and thank you your contribution. Best wishes alfie
Hi, great to hear from you, I hope you find our community forum interesting and supportive. I note that you have a big anniversary coming soon. I find post diagnosis I am generally more emotional, privately grateful that I am still here, but very reflective and sad about those who have not made it or are not as lucky as I am. When I see my medical team they welcome me with open arms and make me feel so important to them, they are so dedicated, caring and very special people. How have you managed your fatigue and anxiety/ depression?
Hi Erica, thanks for your reply. My fatigue is a constant battle. I’ve joined the gym (docs referral) and it helps a bit, also seems to help with my anxiety and depression. I’ve also been doing some volunteer work as well locally. I go to Talk plus and they are great, I can pretty much talk freely about all that goes on in my mind. I haven’t worked (paid work) for 10 years now, but now I’m only just starting to feel like I can get back into full or part time work. I’ve got help from a local job club as well, though I must admit it all seems a bit daunting as it’s all online CV applications and tests etc, I’m old school where I preferred the old fashioned application form then interview then straight to it. I’m 58 yrs old now (59 next month) lol . I do Hope That you are doing ok in yourself and yes, I too feel grateful that I’m still here. The medical teams involved in all this are fantastic. I sometimes wonder how they keep up with dealing with all us patients who all have different needs and problems. Truly amazing human beings.
Hi Cliff, I also find my local gym and pilates and Zumba classes help with my fatigue and emotions, although there are times I need to duvet dive. I find my fatigue can come on immediately or up to 48 hrs after I have overdone it emotionally or physically. I am a girl for a nap, I am a lady that lunches and I don’t do evenings. Since diagnosis I do not deal with what personally stresses me well and my emotions were on high alert for a long while. I am also now far less materialistic and appreciate so many things that are free in life like priceless family and friends, nature, music etc. As for paid employment I worked full time for 5 yrs after my diagnosis in 2003. I was then 53yrs old and all I did was work, run a house and sleep and luckily I had accrued quite a bit of leave which I could use up. I had no quality or balance of life at all. However my life is as full as I can manage now as I work 1 day a month and do other voluntary work that keeps me out of mischief, mostly with Bloodwise. I know my 45yr old son applied for jobs a few years back and you are so right about the application process being on line, I freeze with tests and interviews. Do you volunteer that you have blood cancer??? I am sure I would never get a job now. Good luck to you and please let us know how you get on.
Not got a clue exactly when I was diagnosed. Some time early in the year in 2013, but that’s accurate enough for me. Do remember getting phone call from GP while we were out with the village walking group, but that’s about it.
Hello dickm hope you are well and that your half acre garden is flourishing now the weather is warming up. Even though you don’t do anniversaries I wanted to send you my best wishes and wish you continued good health to enjoy all the activities that bring you happiness in your life. Regards Alfie.
I remember my diagnosis date, & my 1st AML chemo date. I also remember my date for conditioining chemo ready for SCT, but I celebrate ‘my birthday’, the date of transplant, every year. It’s 11yrs on 7th August!
Christmas is special too, but the real milestones are the special family occasions. Just yesterday my first grandchild turned 1, whilst attending his birthday party a special song from transplant days came on the radio heard by my husband & he looked out & saw me with both my children & cuddling my grandson & he had a few tears of joy. Glad that I survived to live all the occasions that I fought for.
I also have survivor guilt for the friends I made at out patients who never made it. I liken this to the DDay survivors when they talk about comrades that never made it.
Sometime I feel I would like to have a SCT survivors group meeting as I feel that no one else really understands what you’ve been through & what it feels like to miss others who didn’t make it. Sometimes you feel like you’re the only one out there - then I come on here & find you all.
Dear Christine, thank you so much for sharing this beautiful story. It is so life affirming to know that despite the trauma of your treatment for aml you have gone on to lead a life full of joy. As for survivors guilt, all you can do is use it as motivation to get as much out of life as you can and live with no regrets. I recently celebrated my first year since diagnosis of a incurable blood cancer ppcl myeloma, I have spent a year making happy memories with my husband of 35 years for which I am truly grateful. None of of us know what the future holds, cancer or no cancer, a philosophy which I suspect would lead to happier lives for everyone. Best wishes alfie, female