This is the first time i have posted - eek! I normally just read and sometimes reply but don’t start a post.
My husband had his first face to face appt today in 3yrs.We were both surprised at the emotions it kicked up - from fighting the traffic to the awful parking to the hr long delay and then the appt itself.
It was in the same room where he was diagnosed 7yrs ago and hubby said he felt triggered and i knew exactly what he meant. What has wrung us both out is we took the opportunity today to tell the staff how abandoned we have been during covid from a health care point of view. I told them politely and firmly how we’ve been let down - especially when looking for help since November. To be fair, they were genuinely shocked and saddened and apologised. When the dr was examining my hubby, the CNS sat with me and said it’s not ok to have been abandoned as we were and i bloomin burst into tears. Second time in that room in my life and second time ive cried and been handed tissues.
When we went with the paperwork to get follow up appt, receptionist told us clinic was full on that date and that Haematology would be in touch - i decided that wasn’t good enough. I honestly could hear Erica on here saying to be pleasantly assertive and i dragged hubby back to clinic and spoke to CNS who sorted it all and we left with the appropriate appt so a big thanks to Erica!
I think both of us have been exhausted by the interactions today and it was a visible reminder of something we kid ourselves we are ‘okay’ with. We popped into our local Maggie’s after to decompress. Feeling all the feels tonight.
Apologies for length of post, thanks for reading
@Ericas words have helped so many! Well done for being so assertive, especially after such an emotional appointment. I’m triggered every time I attend and appointment. We have started going away for the night following the appointment as I just need to be away from people, from conversations and reality.
I’m so glad your team acknowledged your feelings were valid. Hopefully things will improve now.
How did your husband get on?
Hoping that you are taking it easy tonight and both being very kind to yourself.
Sending lots and lots of love x
Oh @judesadventures wow, what a day you have both had you must be so, so emotionally, physically and practically exhausted.
Just worrying about all the issues around travelling and parking wear me out, I just don’t deal with what personally stresses me out well and that is before I have got into the hospital.
Thanks so much for your post because it showed both of your personal insights so clearly.
I often find it difficult to work out why I am having certain emotions and thoughts.
I am so proud of you being pleasantly assertive and it worked.
I am so glad that you genuinely burst into tears that really shows how much you were emotionally effected and drained.
I hope some lessons have been learnt from your experiences.
Please, please be ever so kind and spoil yourselves tonight and take it easy tomorrow.
Please keep posting because I learn so much from you.
Lots of love to you both xx
Thank you for such a kind reply from you both Nichola and Erica, i really appreciate it. Hubby is getting a scan and potentially an aspirate and we’ll take it from there based on results. Something definitely needed looked at to establish where he is on this current path.
Thank you again. Wishing you well
You both take care and keep us opiated when you feel able to x
Well done @judesadventures and a huge thank you to our wonderful @Erica.
How fabulous that @Erica words resounded with you so much that you were able to feel so empowered to ask for and get what you needed. I am so happy that you came away from your appointment feeling accomplished. Amazing
Being triggered by an environment is hard its not like you can walk away. When I recognise my thoughts and emotions are triggered I try to practice thought stopping. I try to think about other things like boring stuff such as the worst bits of work and listening to music helps me. l take my ear phones everywhere.
Well done Jude, you at last, made it!!!
I can imagine your emotions and actually being able to tell someone face to face how disappointed you both have been must have been a very big weight off your mind. Three years worth of emotions, that’s a lot of tears. You probably feel much better now you’ve got this off your chest. At least, I hope you do. Try and enjoy what’s left of the weekend. Xxx
Thank you for posting this @judesadventures. It is so important to relay how you both have felt over this time and I am pleased it was acknowledged by the team. It is all our right to be ‘pleasantly assertive’ (copyright to Erica) about our own and our loved ones health.
I am really glad you had Maggie’s to visit after and please know we are also here.
Best wishes to you both
Hi @judesadventures I have been thinking of you both loads.
How are you feeling and doing now?
Be ever so kind to yourselves, both of you.
Thank you for asking. This has been one of the most challenging weeks of our lives unfortunately. On top of all that’s going on for N, my dad and my mum, my recovery from surgery, my father in law took critically ill on Friday with, as it turns out, a complete bowel obstruction. He has been fortunate to survive. We now await the news as to what the obstruction is. So we have all been hanging on to our sanity with fingertips. But… my extraordinary boy is 15 today and we have found moments to focus on the joy he brings and the beautiful nature he has. We have celebrated him and ensured he knows he is already making a success of life. Again, thank you for asking. I send my very best wishes to you, always and hope life for you feels manageable x
Oh @judesadventures you have had so, so much going on for so long and now your father in law as well.
I wonder where your recovery and welfare goes to, please try and look after yourself as well as you care and look after everyone else.
I cannot believe your boy is 15 yrs old, a great big happy birthday to him.
Sending you all so many virtual hugs so they can all go to wherever needed and a great big supply for your pocket xxxxxxxx