Resources we found along the way & stuff we made up.
The only way I can explain Macmillan is it is like walking through a wild storm & then stepping into place of calm. This charity run cancer support community is a well oiled machine. I feel like they are always that one step ahead of us at all points of our journey so far. Macmillan offer physical, emotional & financial support to help patients & carers to lead the best life they can.
This book was posted to me at work anonymously to the cafe & its been a godsend to me as the person without cancer. The way Sophie explains her feelings, fears & vulnerabilities actually helped me realise some fo the feelings Al was unable to say.
I was doing too much for Al. I was actually taking away what little control of his life he felt he had left.
By gently nudging Al or simply having more faith in him to do small (normal) things like get the shopping, pay a bill or pick up his own prescription. He suddenly started to grow confidence again, he felt less alienated, by going out into the world & grabbed independence by the balls & this made him more determined. Sometimes you just need to have simple things spelled out & this wonderful book is bursting with these gems
A friend who was a GP said to Al early on "make a monthly appointment with a GP you really like & go every month even if you feel fine"
We were like really? That seemed like a waste of time & resource (for the doctor & nhs)...
Al checks in monthly for his appointments & Al's words of wisdom from this are here
Ask the doctors these questions, use resources like booklets from Macmillan or pop into Maggies for a chat. Breathe & take baby steps, you're more resilient than you actually realise, don't make this shitty time even harder than it needs to be reading horror stories or worst case scenarios. Try your hardest to tackle your situation & treatment plan bit by bit.
Google worst case scenarios
Google life expectancy
Google side effects
The only organisation in the UK that is solely dedicated to Myeloma education & research, with the main goal of finding a cure. I would call Myeloma UK the holy bible of all things Myeloma related! Myeloma TV was incredibly helpful in the earlier days, helping ease the fear & the feeling of isolation while Al was house bound. This site is an amazing way to educate friends of family if you are battling Myeloma.
Bag a victory a day - even if its tiny - one of Al's littlest ones is...
Putting on his socks on your own. Yep that is one of Al's victories. With two spinal fractures each morning Al battles with his socks. I put his socks on for the first month after diagnosis, then one day he decided he would make this one of his daily victories... You can't imagine the happiness I felt when I received a photo one day at work with Al with his socks on with a message saying "look what I did on my own"
Find a challenge that you are able to work towards turning into a victory... Its so good for your metal wellbeing.