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

Movement

Hello, so here's an update:

I'll start with the weekend; it was not great. Man's movement was slow and painful. As a result, his mood was low having felt restricted for so long now. It's all very well sitting around and watching telly if that's your choice but now he's had that choice taken from him, it's very boring. And depressing. And of course there's no biking to watch anymore.  He said many times over the weekend that he'd like to just be able to take the dog for a walk. And there were many times when he didn't say a word (which is not like him) but suffered in silence.

Pain is a constant reminder of the infestation within his body and therefore it's easy to let it take over his mind. I made the misjudgement of asking our lovely friends to borrow a walking aid to help Man get about the house. He politely declined it - it didn't get further than the front door - and they kindly took it back to their house.  I felt awful, I felt I'd pushed something on him that he clearly wasn't ready for.  Most of all, I didn't want to put the idea into his head that I viewed him as disabled. I mean he clearly is (!) but obviously his pride and will is nowhere near ready and that's fine. And so, pathetic fallacy style-y, we sat indoors on Sunday, hardly moved and watched the rain relentlessly fall outside.

BUT, by yesterday the mood - his and mine - had lifted. The sun was shining and it was our final trip to Chaucer for Round 3. Man made no bones (pun intended) about the pain he'd been in and the nurses listened warmly and prescribed Gabapentin for his nerve pain.  The usual bloods were taken,  Velcade injected into his belly and Dex was administered.  Whilst waiting to see oncologist Dr L, we were told that his paraprotein levels have gone down yet again! In 3 months they've gone from 58 to just 8 so these chemicals are indeed working, hurrah! But of course, Man's primary concern now is the damage in his pelvis and we were assured that an appointment will be made sooner rather than later to see the bone guy, Mr M, in London.  Hopefully a scan date will be offered very soon.

In the meantime, full of dex (steroid) and the new and wonderful Gabapentin physical improvement was visual to me and felt keenly by Man. In fact, the bloke literally sprung out of bed this morning and did a little naked dance for me, a la Strictly Come Dancing style 😄  Believe it or not, it was the most welcome sight seeing my hubster prance off to get the morning coffee...

Movement breeds freedom and freedom soothes the mind. After a pretty shitty week, all is much better in the world and we're back to flying the #teambradley flag. We've got a nice weekend to look forward to, we've got sun on our faces and meds doing their job.

Oh and the other big news is that Man is currently writing a blog entry - watch this space!

Big love xx

PS - Bone scan appointment just in - 11th October :-)

Staying strong

Ok, so little tree has visibly become weather-beaten. I noticed today when I was cutting the grass that leaves were curling and the top ones had become wind-singed. It alarmed me, I won't lie.

But as I stared at it, I noticed also that the wooden steak was steadfast, holding our little tree firmly in its growing position. Moreover, I noticed what the jasmine behind it was doing. And that was clinging on, firmly tight, to the trunk - reaching, clinging, holding up our tree up. Supporting. Cuddling. Backing it battle against the elements.

And this is what our family and friends do, daily. I've written about how much love and support we've had but here's a graphic representation of how we're coping through cancer:

Thank you for holding us up, for supporting, for feeding, for believing. We're thankful for life and growth and for our tomorrows. 

Man creaks when he stands up, we're not sure why. All meds from Round 2 are now finished and we're eagerly awaiting Tuesday's oncology appointment for answers. Perhaps all we'll get from it is posh coffee and steroids but we wait anxiously for reasons why Man's mobility is getting worse. 

Hang tight, cos we are! 

Plaster

I undertook some First Aid training yesterday – it's certainly beneficial for working in a school but I've dodged the training bullet for years. However, I am now a fully fledged First Aider. It doesn't mean I'm qualified to make any diagnosis on a sick or injured person; it merely means I have some knowledge to know how to respond to an incident in the first instance whilst waiting for the professionals to arrive.

And [predictably tenuously] that's how cancer is. I can cook for the patient, I can manage the medication and can offer interim suggestions and support in-between visits to the pros. In all honesty, it doesn't feel enough. There are days when I can't take Man's pain away, there are times when I can only watch the frustration and listen to his exasperation. It's maddening that, despite our well-intentioned positive outlook, the beast still takes over.

Unfortunately not only Man suffers but so do people around us. My son, Man's stepson, flunked his second year at uni. He's either got to do the whole thing again or try to wing it on his own. A third option is to appeal against the single mark that kept him from progressing onto Yr 3. But what would the mitigating circumstances be? What extreme circumstances might have affected our bright, intelligent son to have scored so disappointingly? And you know what, with Man's permission, we played the C-card. There wasn't much soul searching about it, indeed, it's got us thinking about how a cancer diagnosis impacts on everyone around us. One of Man's best friends makes no secret about how much he misses riding with him (Courgette King!), my oldest, best mucker chokes up when she reads the blog, his parents send food and probably feel helpless that they can't do more, as do his own children. But in this house the affects are keenly felt and my children are the ones who hear the pain and frustration, see me upset and feel how life is not always fair or on course as we had originally navigated.

And so, Man wrote a statement in support of the exam result appeal, citing 'concern that the emotional effect of my illness on the family, together with the demands of additional physical chores, has had a detrimental effect on E's ability to perform at the level we would have all hoped...'

It's not lost on us that many people are unable to continue with life as they'd wished. We constantly stick plasters over the cuts and try and stem the bleeding but, ultimately, it's the professionals who will make the life-changing decisions. Hang in there please folks, life as we know it WILL resume as soon as is humanely possible.

Growing pains

Firstly, thank you so much for your warm wishes, kind messages, visits and phone calls since my last post. They mean the world to us to know that you're all behind us. Again, it highlights all that is great about human nature; your sincerity and positive attidudes makes Man smile daily.

After not being at work for two months - shamelessly sunning myself and eating myself stupid - I returned today. It's a different role but as I walked through the school's doors I was greeted with such friendliness from my old muckers, asking how Man was doing. I'm proud to tell them that "he's well" which of course makes people feel better and knowing that the meds are working avoids the awkward 'C' conversation. And it's true, the meds are working.

But, as is usually the case with the internet world, life isn't always as rosy. I have so far written about the good but there is, of course, the bad (the ugly is a long way off!) Those of you who have had experience of cancer know that it's all consuming, both the treatment and the disease.  As much as Man's blood results are fantastic, ie he's kicking butt, the side effects are paradoxically debilitating. Loss of taste, whilst not lethal in itself has certainly worn down Man's enthusiasm for eating. That in turn takes some of life's pleasures as well as making eating nutritious food strenuous. On top of that and some other effects, lessened mobility increases apathy. He is stoically working from home but cabin fever has definitely set in. The rule of no walking or riding have become barriers to some of life's enjoyment and there's an ever searching to keep the balance of enjoying life and not letting myeloma take over. In our minds, chemo will be over by November, in time to enjoy Christmas and winter tyres.

A precious friend of mine listened to my worries today and she expressed what my husband is experiencing as 'growing pains'. It hurts to grow a new pelvis but my goodness, he's doing it 👍

Fortitude

A quick update - Man had chemo yesterday so we're well into Round 2. He does tolerate the injections well and, as usual, takes his laptop with him to hospital so that he can continue to work. What a man!

So results of last week's blood tests are back and hallelujah, his paraproteins are now down to 12! At diagnosis they were 58, normal is 0, so he's going in the right direction. Suck that myeloma!

Celebrations included redesigning our bedroom to accommodate the cancer chair so we now have a fully functioning man cave with said chair, music, books and a telly set up. This morning, the sun shone directly onto the chair so I took that as a good sign of the stars' motivation. They'll always shine, even if we can't see them.

And the sun continues to shine on us. Man stoically watched his friends cycle off for the Saturday Morning Rampage, smiling with them but wishing he was going. To compensate, he's taken Whyte T-130  out in the garden for a  'Clean and a fettle.'

My Man: