A man in armour is always a hero

Hello supporters,

So - again - I haven't blogged for a while and that's because the seam that runs through our journey has not been without bumps. I guess I could write warts and all but that's not my style; once crappy stuff gets out there, there's no turning back so I tend not to go there. Those closest to us know how bad things get, how frustrating immobility is, how demoralising being a carer is, how badly cancer sucks.

Man now wears his armour for most of the day, every day. He is lucky - not many doctors prescribe the cast that he wears. Should anyone else with his, shall we say 'injury', they would be in a plaster cast which means total sweating, constant pain and probably a catheter. And yet Man's cast comes off so that he can actually take it off to go to the loo. Result.

But the bloody thing is cumbersome, unforgiving, uncomfortable and just adds to his pain. The reason he has to wear it is to keep his body still whilst his pelvic bones regrow. In itself, having no pelvis is painful and Man suffers extreme discomfort every minute of every hour. He struggles to get comfortable, despite having bought a new mattress. He struggles with doing every day routines such as showering and eating. Mentally, he struggles with much more. Here is a man who was, until 3 months ago, hands on - walked the dog, cycled miles every week, did the blue jobs and cared for his wife and family. All that has stopped and with the cease-fire so comes despondency and boredom. This blog is about his journey - our journey together - but until I can persuade him to write an entry himself then this is my outlet. And let me tell you, it's shit. Seeing your young, fit, healthy loved one become a disabled body overnight knocks the hell out of life. I won't lie - I've struggled with the adjustment. Someone recently described me as his 'carer' - that was harsh. I don't want to be his carer, he doesn't want me to be his carer and yet here we are. So yes, I 'care' for him and have taken over the household chores and responsibilities but really that's not helping anyone. It undermines his independence, my autonomy and our marriage. Again, cancer sucks and affects every aspect of our life. 

We met with a professor specialist in myeloma this week. The drive in was ridiculous - motorway traffic was tragic, inner city London was testing and there was no parking at UCL. However, the Proff was kindly and pro-active. So much so that her default suggestion to ongoing treatment was stem cell transplant. SCT is a bitch and, as far as we're concerned, a last resort. Man has a solitary plasmacytoma diagnosis and we're hoping that he'll beat that battle without having to face the war that is full blown myeloma. Hence, we don't want to suffer SCT until we really have to. And we both know that will mean cancer that is here to stay and we're running out of options. But we are - hopefully - not there yet. So we've compromised. In the new year, Man will [probably] have a stem cell harvest with a view to transplanting clean cells later in the journey. Click here for the ins and out of SCT: here  Oh, and did I say, cancer sucks. Man is filled with chemo as well as 7 other tablets every day, and weekly injections still - we're currently on cycle 5. To say that people battle cancer undermines the daily struggle. Many of the drugs affect Man's senses, mood, bodily functions and yet he is a warrior and soldiers on. He's my hero. 

And so we go to comedy nights, albeit, Man has to stand in pain, cannot travel comfortably and is all to aware that he looks like a storm trooper/gladiator with everybody staring. He bravely succumbs to his disability, he valiantly faces the pain, he mentally adjusts to his new position, he emotionally faces the shite journey that cancer offers.

This is a long one, no apologies. It actually doesn't touch on how bloody hard I'm finding things, on how much pain my husband feels on a daily basis and just how much cancer is a disgusting fiend with absolutely no rhyme or reason to human existence. Having said that #we'vegotthis  #teambradly #fighting