My wife and I have just had our 35th wedding anniversary.
Previously we would have seen it as another day and not done anything out of the ordinary.
As we were going to be down in Inverness at the hospital for bloods and given that it has been challenging period since diagnosis in October 2023, I suggested we do something for our anniversary.
So after a quick visit to the Haematology Clinic we took a lovely walk along the river and had a nice lunch.
It’s funny how our diagnosis changes how we view certain things in life.
Wondering if others have found their perspective has changed after diagnosis?
Hello @DuncanB. Congratulations to you and your wife on your 35th wedding anniversary! I am so pleased you were able to combine a hospital visit with marking the special occasion.
I agree with you, my perspective has changed after my diagnosis despite that being many years ago. I am coming up to 36 years since my blood cancer diagnosis. I find that hard to believe in many ways. I try to make the most of each day but I must admit some days are a struggle as my health has declined and other health conditions have been added to the list, many of them related to living with myelofibrosis for so long. I am grateful, of course, but it’s hard living with a ‘hidden,’ now terminal illness, that is so often misunderstood.
I had an eventful weekend as I had to attend A&E with severe chest pain and shortness of breath. Someone I know kindly took me, but was rather unhelpful in some ways. She was answering the receptionist’s questions without really knowing much about me and when I was explaining that I was immunocompromised and at risk of infection, she interrupted with a hurtful comment that minimised the severity of my blood cancer. Sorry to go on about that @DuncanB my main reason for posting was to congratulate you and thank you for all the support you give on this forum and for your wise words. Willow x
It’s amazing that it has been 36 years since you had your blood cancer diagnosis.
You are so on the mark about Myelofibrosis. It definitely isn’t well understood among the general population. Maybe not that surprising as it is a rare type of blood cancer.
Your weekend sounds challenging. It’s a shame the person who took you to A&E wanted to answer all the questions and then added in a hurtful comment. You were right to highlight everything.
Don’t apologise for sharing what was going on at the weekend. We are all here to support each other @Willow and you are always one of the first to offer words of encouragement to others on the forum when facing difficult times.
I’m hoping that things are settling down and you are doing okay today.
@DuncanB anniversary blessing to you and your wife.
My perspective has changed. I have cut all the noise out of my life and if I want a treat or a rest day then that is living my best life
Awww @Willow people just don’t get it do they about immunosupression
Would it help to carry a note with you IMMUNOSUPRESSED very important instructions and give one to the person who took you
Hugs
Thank you for your post, yes it certainly does make my wife and I often stop and celebrate where we are in life, and focus on our next holiday.
We do have a much stronger focus on family matters, are have much more robust plans set for the future, for example we made sure our wills are up to date, correct and cover all eventualities.
Take good care and belated wishes for your anniversary
@DuncanB a very happy 35th wedding anniversary to you and your wife and a lovely walk along the river and a nice lunch sounds idyllic to me.
Oh dear @Willow wow 36 yrs since your blood cancer diagnosis and treatments must have advanced so much in that time. I know that you have struggled with your health for many years and yes, we seem to collect other conditions along the way. the great problem we have is other people just do not understand hidden illnesses You say that you ended up in A&E with severe chest pains and shortness of breath, but you have not told us how you are now and what the outcome was? It must have been so scary for you. As for the person who (kindly) took you in thinking they knew better when telling the receptionist about you being immunocompromised and minimised the severity and importance of that being clearly documented.
We are here to always support you, we are your forum family and you are such a support to us all @Willow
I agree @Willow since diagnosis about gratitude and I sometimes try and reframe my thinking. Sometimes me and my head can be worst enemies. My diagnosis firstly made me ‘get my affairs in order’. I have re-assessed my life, before my diagnosis I went through life on autopilot and I was far more materialistic and thought my life was mapped out before me. I try to every day and I know it must be hard for you sometimes. I decided what was important to me and who I wanted to spend life with. The best things in life are free like family and friends, nature etc. and the bestest forum family ever. Now despite my medical complex issues my 70’s are my best decade ever, I shall grow old disgracefully.
Great post @DuncanB and thanks for all your responses, they have really made me think.
Willow, I’m sorry you were feeling unwell. I hope you are on the mend now.
I just wanted to be more present. My job as an assistant head was exhausting and although I had the holidays, I was like a zombie during the weeks. I cut my hours which made such a huge difference.
It made me realise that work needed to be left at work. I came home that little earlier and enjoyed cooking and chatting with my husband and the girls instead of it being a rush. I refused to open the laptop top in the evening. I refused to answer emails after a certain time. I didn’t push myself to go to work if I was feeling unwell. Really little changes but ones that had the biggest impact.
For me, it’s always been the little things that are important but things that create memories.
So for me, it was just being more present.
I really enjoyed reflecting on that. It’s nice to think of the positives that came out of a difficult situation
Oh I love this, happy anniversary dear @DuncanB to you and your wife. I know what you mean about previously… For me there’s a definite before and after with how I mark occasions these days. Hopefully the clinic appointment was merely routine.
Here’s to many further anniversaries—I note 35 years can be celebrated with coral so it seems very apt that you had such a nice time near the sea today, although surely not warm enough for any coral reefs there, yet!
May I say how incredibly resilient you must be dear @Willow, 36 years is really awe-inspiring to me. Your weekend really does sound eventful though, and rather testing. That friend’s minimising comments might have triggered a slightly snippy, protective comment from me had I been there! Misunderstandings indeed. I wonder would your friend benefit from having a Blood Cancer UK booklet for your diagnosis shared with her?! Love @2DB’s idea too, plus the treats!!! Still learning when to rest
So great to read all these varied responses to your ever-thoughtful comments @DuncanB. You’re my inspiration as ever @Erica, and I agree that materialism isn’t much help when we have to tolerate the sort of internal long-haul aspects of these diagnoses. Not quite as organised as you or @GenesisDevice though, still need to sort out my will across 2 countries. Totally agree with @Nichola75 about trying to keep work to work hours or else it can be any time. I despair at my other half working in bed, at traffic lights, on motorways!!!
We’ve got a heat advisory today and it’s making me feel a bit groggy, but I must face the sweltering kitchen at some point to make pesto for dinner
Oh I’m glad it was only routine testing @DuncanB, although even that can occasionally still surprise me with undue anxiety! Fingers crossed it’s all great results for you
Thankfully it cooled down in our kitchen to be pleasant enough making dinner and a tasty batch of pesto. Today we’re seeing The Odyssey in a comfy air-conditioned cinema so that will also be cool, in a different way!
Fingers crossed @Duncan that everything straightforward with blood tests. I’ve not heard anything to the contrary.
Enjoy The Odeysey. On our mini break in May we went to Findlater Castle and apparently at the beach next to it they built a shipwreck as part of the movie scene.
Oh it was really stunning @DuncanB! It’s not a spoiler to say that quite a long, rather transformative section of the film was set up on the top, but the ruins were obscured a bit with film magic
Hi, and happy 35th anniversary to you both! A walk along the river and a nice lunch sounds like a perfect way to mark it, especially after a clinic visit.
Your question about changing perspectives really hit home for me. Mine actually happened years before my own diagnosis. When I was just 26 and had fresh, brand-new baby in my arms, my dad died suddenly at only 52. That sort of shock completely resets how you view time.
When my diagnosis came along later, it simply reinforced what I’d already learned: life is unpredictable, so make the most of today. I’m well known for saying “I might get run over by a bus tomorrow!”—so if there’s a reason to celebrate, go do it now.
I’m so glad you both took the time to mark the day properly. Wishing you all the best, and hope you’re having a decent week so far!
Thanks for sharing how your perspective changed many years ago.
I think those awful moments definitely changes how you look at your diagnosis.
I was 7 when my Dad died of cancer at 42.
Oldest sister was 48 and had just 4 months from diagnosis to passing.
Middle sister passed away at 57 after living 3.5 years with cancer.
Having been so fortunate to have a Bone Marrow Transplant thanks to an anonymous donor, I definitely look very differently at life and I’m determined to make the most of this second chance
Hi Willow, I don’t know why people try to minimise the severity of blood cancer. My sister in law does it at every opportunity. I don’t think she realises what she is doing. Whenever my diagnosis (Myeloproliferative neoplasms ('MPN')) is brought up with other family members she always chips in with " It’s not serious, it’s treatable not terminal , he can lead a normal life" Stings a bit, doesnt it. Take care Brian
