I thought it may be interesting for those who are newly diagnosed to hear from those who are weeks/months/years down the line from their diagnosis, and hear what you would tell yourself if you could go back?
Would you give reassurance about what life on watch & wait will be like?
Would you give yourself hope, that your treatment will be successful?
Would you ask more questions?
Would you encourage your family to find support for themselves too?
Is there something you wish you had asked the nurse or consultant?
I hope this may be helpful for those who are newly diagnosed, who may be looking for advice, reassurance or stories.
Hi Dawn, what a brilliant question. When I was diagnosed I would tell myself that I have just had probably the biggest shock of my life, it has rocked what I thought was my world and my mortality. I do not deal with shock well and instead of ‘fight or flight’ my whole body emotionally and physically freezes, I did not ask any questions so I need to give myself time to assimilate the news. I have hundreds of questions, fears, what if’s, emotions and thoughts whizzing around and it might help me if I wrote down what I had been told and all my questions. It is OK to ask questions and give myself time before replying to what I am told. Next make myself a hot chocolate and open that shortbread I have been keeping for a special occasion. I have been told to go back to my GP for a referral to a haematologist so I need to make that appointment for the referral, but also to keep asking everything I want to know. I have family, friends and work to tell and some need to know immediately but others can wait. It will be best for me to tell people in person wherever possible and remember the diagnosis will also bring up all sorts of things for them and everyone is different. We will all be floundering, but I need to keep the communication open and ongoing so we can all be honest with each other. I would ask them if they would like any type of support. As I was diagnosed 15 yrs ago I could tell myself there is hope and that I am not going to die immediately. I would tell myself to find the Bloodwise website and to ring the Bloodwise support line if I need to and download and read their relevant booklets. I would join the Bloodwise community forum and read this post. I would tell myself to also read patient stories as they really resonate with me more than factual reading. I would not know about watch and wait at this stage but when I was told I was going on it I would tell myself how lucky I am and to be aware of my emotional rollercoaster around medical appointments. Also that I would learn to manage the symptoms I was diagnosed with and that it would work out really well ‘not doing evenings’ and being a ‘lady that lunches’. It is OK to say my needs and not expect others to guess them. I would explain the difference between tiredness and fatigue. I would say that my fatigue can come on immediately or up to 48hrs later and it is OK to have a nap in the afternoon sometimes. I would extoll the virtues of fresh air, a healthier diet, whatever exercise is appropriate and interaction with people. I would tell myself that I now try to give something back to Bloodwise that have been there for me. A great plus is that I have really got to know myself and what is important to me, I am not as materialistic, I say my needs more and family, friends, nature and my music are priceless and the best things in life are free. Finally, I would completely astound myself by saying I now go to the gym and do Pilates and Zumba classes at 69 yrs old.
I agree with all of that Erica! The main thing I would do is go a bit easier on myself. It’s great having a stiff upper lip and being strong but eventually it catches up with you and hits you even harder. Don’t compare to others. This is your journey. No journey is the same and no one journey is easier than another. Listen to your body and take the time you need when you need it. Acknowledge those feelings and just let them be for a while - without putting any time
limits on when you should start to feel better or do certain things. Two years later I’m
just starting to followemphasized text this advice and wish I had done it sooner!
Don’t book that holiday in New Zealand! About a fortnight before I fell I’d booked an expensive trip to New Zealand and I lost all of the money! On a more disease level I’d probably tell myself to stick with and be strong because it’s not all over even if it feels like right now. I’ll get to see beautiful sights again and taste great meals and drink a nice drink by the sea. the dark days won’t last forever. And for the off days there’s always music.
I agree, for the off days (well, every day really) there is music. I have also found there are different do able ways of enjoying myself and experiencing new things and sometimes they are even free.