No Jokes- this is the real deal

Just over a year ago I had just finished ‘salvage’ chemotherapy – “ESHAP” aimed at puttting my relapsed Hodgkin’s Lymphoma into remission. I had a stem cell harvest which yielded enough stem cells for several transplants (not that that was required but it felt good anyway!) I then had a CT scan prior to transplant that should have confirmed remission; and the next step to transplant and subsequent, hopefully, cure. However, that scan showed that my disease had grown despite chemo and was therefore now labeled as relapsed AND refractory, not good.

A consultation following the results gave me options, none of which at the time seemed to me ‘worth’ the risk and I took the option of no more treatment. At that point  in view of my decision I was given an estimated life span of six months. I have to point out that this was actually not a hard decision to make, I knew in my heart that I would rather have six good months of health and happiness than several years of feeling crap and debilitated.

Six months, and much fun passed, and I was still alive and feeling pretty well although I was now aware of  the disease having progressed. It was at this point I decided to try one of the options outlined six months ago, Brentuximab a lymphoma targeted chemo, which at the time I believed to give me some extra time - average 10 months.

The treatment, Brentuximab, started in February this year and had pretty much immediate results obvious to me that were then confirmed after 6 cycles by PET scan showing complete remission. This is what I had been aiming for last year and so I was now in line for a stem cell transplant.

However, because my lymphoma had been resistant to the first line of 'salvage' chemo my consultant advised referral to a larger centre who could offer a donor transplant, rather than my own stem cells, that  may offer a greater chance of survival, although also a greater chance of death due to procedure. Having only just got my head round having any kind of transplant I was reluctant to have this consultation but my doctor convinced me that it was for the best in order to make a fully informed decision that I discuss my situation and options with an expert, ie someone who deals with donor transplants every day.

So I have now had the consultation with the expert. To put it simply, a donor transplant does give better stats of being alive in 5 years. However the price is high, it also carries a significant risk of long term complications, some  are ‘mild’ and some, although much less likely, quite bad, well really bad. Also it would mean 3 months away from home with a team I don’t know and who don’t know me. Plus a longer recovery time.

Apparently because the lymphoma was quite ‘late’ in relapsing the first time (nearly 5 years) plus my ‘break’ in treatment (June 2011 to Feb 2012), plus the fact it was also resistant to the ESHAP this could mean that it will be a real MOFO to cure and therefore if one were to edge  (or hedge?) one’s bets would be let's blast it with the slightly riskier treatment……..

Dr Expert did concede that most of the time the advice he would give patients looking at both options would be straight forward but with my case and unusual disease progression etc he could not say definitely one way or another.

So, to have my own stem cells transplanted ‘locally’ would mean statistically less chance of survival at 5 years, but also less long term effects and less recovery time. If I do relapse then I have the chance to have a donor transplant later, although it wouldn’t be as statistically favourable as having at first line treatment.

If I go stats alone, this choice may be easier - ie donor is best chance of cure - but I am already lterally living proof that stats aren't everything, or I wouldn't still be here!

So that’s that! Go me! This is the hardest decision I have ever made! Harder than saying no more! Which btw is also an option! But with a very low chance of seeing 5 years!

It’s taken me nearly 2 weeks to gather my thought about this so don’t worry it you can’t formulate an opinion, although all opinion greatfully appreciated J

xxx

Brentuximab number 10 cancelled

After a quick prod of my armpits and groin with no freaky nodes to feel my Dr asks;

"Any drenching night sweats?"

"No"

"Unexplained weight loss?"

"Ha! I wish"

"No recurrence of itching?"

"Nope"

"So everything's ok then?"

"Well, yeah I am fine. I do have constant pain though, kind of feels in my bones" He looks concerned;

"Does it stop you sleeping?"

"No, it's really not that bad, it doesn't stop me doing anything, it's just wearing because its pretty much constant. Apart from that as I say I'm fine, oh well my hair's falling out but hey I have got off lightly so far it's been 6 months of treatment."

"Ok , good...."

"Oh and I'm going deaf......" discussion follows re degree of deafness, conclusion - we won't worry about that for now.......
"yes so really I am ok, oh but I am losing my memory"

Now I have done it! Now he is definitely concerned. I try to dumb it down but it's out there. Clearly it's a cognitive change which in other chemo would probably be put down to 'chemo brain' but with Brentuximab of course there is this weird madness virus to look out for. I didn't remember to tell him I am also having trouble finding words and expressing myself but then again that is very similar to my first lot of chemo way back when sometimes I had to mentally picture an object before I could recall the name for it. Now the words 'thingy', 'jobby' and 'oojamaflip' are frequent in my conversation.

He suggests that as side effects are mild we continue but if in 3 weeks any of the above is worse we omit at least a dose. I agree, and am grateful for his sensible approach and discussion. I slope off to the canteen to wait for my drug to be dispensed from pharmacy.

Ten minutes later he calls me to say he has decided to not go ahead with treatment today but instead order an MRI scan to be on the safe side. On reflection he has decided that I have done so well so far let's not push it. This sounds sensible. The MRI will be in the next couple of weeks, I see the bone marrow transplant team tomorrow,,,,,,so when I next see my Dr in three weeks time, I will have my MRI results pus a decision on which mode of transplant we are going for and then plans and dates can be made. All good :)

love love love
xxx

Phew...better

Phew, I am feeling better! Actually more than better I am feeling pretty dam good. Wondering whether I might actually be a manic depressive as there is not much middle ground with me. But hey, if I am that's probably not too much of an issue in the scheme of things?

As planned I have had my hair cut, I like it. It would look better if I wasn't so lardy but I am fantasising that after my stem cell transplant I will emerge from hospital at my ideal weight and then when hair grows back I will be an actual goddess. I know it's terribly un PC for me to entertain such thoughts but I can't help it! Hair still dropping but is just slow and steady and is thick enough not to notice for a bit.

I am gutted though, despite having been here before. I know it will grow back, and I do quite like having short hair so probably by xmas I will feel 'normal' again. But in between I know that I won't feel like being out and about socialising and stuff so no salsa, no roller discos :( We have a high school reunion in September so I am  hoping hair will stay intact until then. I wish I could get over the shallowness and vanity and just embrace it as a temporary event and not feel like hiding away, but I am just not there yet. I will be out of action anyway because of low blood counts so I am grateful that this will all coincide with autumn and winter. It's all a small price to pay for my life I know! But that doesn't mean I have to like it!

Today I write from my 'office' - oh yeah that's right now I am reborn as a wannabe novelist I have transformed the spare bedroom in to office / meditation room / bedroom. I have moved the desk and printer in here, I have purchased a big flip chart and pens for brainstorming, Exciting times! Now I just have to reset the body clock to be productive before ten o' clock at night....hmmmm. 

Oh and I lied! The other day I wrote that I had about 20,000 words of my book done, no - I was confused. I do have about 20 pages worth, but that's only 7000 ish words so I was tripping there thinking 20,000. Still, it is flowing quite well so fingers crossed that I can keep it up.

Haven't actually managed to go for a run yet, but I have been thinking about running a lot so pretty much all over it! 

That's all for now, 

xxxxx

Brentuximab: fatigue, aches and hair loss (oooh and rollerdisco)

I woke up this morning not in Portugal like I planned. I bought a ticket ages ago but subsequently spent all my money so I couldn’t actually even get to the airport. Epic me fail. But also I have been so busy lately I feel like I need some down time.

The accumulation of Brentuximab has begun to kick my ass a bit, I wake up aching every day, usually my legs, then it may move in to my arms. I am spending a fortune on over the counter analgesia cos I feel like a wuss asking Doctor for something stronger as the pain’s not that bad on the old pain scale, from zero being none to flipping agony being ten it’s only about a three but just constant.  I can sleep for ages, my default setting is one of general lethargy. And I have chemo brain big time. In the last few days I have forgot my shoes, my wallet, parked outside the flat  in the wrong bay, forgotten to book a badminton court when I am playing in fifteen minutes (twice) had countless rambled conversations with hubby where half of it occurred in my head (although after 15 years together he really should try harder to mind read)

So I have had a few days of general blah! Suffice to say it’s time to turn it around! I started the day early by making a delicious life giving juice , apples, spinach, celery, ginger, pineapple and cucumber, honestly properly lush! Just before Spain we followed the Jason Vale book 'supercharge your life in 14 days' and it was amazing, we felt fantastic mentally and physically and lost 9 pounds, bonus! So back on it.

Also on my taking control of my life schedule today I am going enter 2, yes that’s right 2 ten km runs in September, fact. And I might even actually go for a run today to get started, I will probably just spend the time I coud be running writing a training schedule and colour code it with felt tip, possibly a weight loss projection graph to sit beside it on the wall, or might actually go for a run, who knows?

I have an appointment to get my hair chopped at mid day, the shedding is not speeding up but it’s not stopping, having been here twice before I am taking action early. Might go for pixie cut type thing, with a low thresh hold for a buzz cut when it gets more obvious.

En route to the hairdresser I am going to print out what I have written of my book, what was that? Writing a book? oh yeah, that’s what I said print out  my book what I is writing! I have about 20,000 words so far but I need to see it on paper and scribble a bit. All I will tell you is that it’s a novel and I am writing about what I know :)

Good news flash! Three of my favourite people are moving to Exmouth! How ace is that? Very ace. Having banged on the last two years about how great is is to live here they have seen the light.

Oh and remember that bit about down time, that goes out of the window temporarily this weekend when, wait for it…there is an actual roller disco at the Pavilion! OMG this is pretty much a bucket list event! Can’t wait!

In summary, it appears that I cannot be super human 100% of the time but reckon I can rock a good 80%- maybe! The minor complaints I have are all treatment related and not actually anything to do with cancer because that is now history! Brentuximab has saved my life and here I am whinging about the side effects finally catching up with me. That does not detract from  my gratitude and respect for this wonder drug. On that note - I will go and fetch myself some more delicious juice and start planning my running schedule......

Hasta luego

(is it?)

xxx

To whine or wine??

Time for a whine! That's whine not wine, although maybe wine would help??

I feel properly pants (ie just yuk, out of sorts etc etc)

I think I have misplaced (not lost) my mojo, please if you see it can you return it to me asap! 

It started yesterday, yeah I know - it's clearly a chronic condition. I felt all tired and disgruntled. My only commitment all day was to meet my dad to play badminton, even then I was ten minutes late and forgot my trainers, so was left with choice of play in ugg boots or bare feet? opted for bare feet, played like a ninja but now have big blister on my foot.

Oh and, and!! My hair is falling out, flipping arse biscuits! Fortunately the growth I have had since my last baldy time means I have a fuller head of hair than ever, but still!

Went out for a couple of hours last night to catch up with some friends I hadn't seen for years which was really nice and I did not whine. Came home early enough to cleverly avoid the delicious cocktails that were flowing (check me out behaving like actual sensible grown up for the second time in a week! Oh blimey I must be unwell!). Got home, managed to whine a bit at husband who then gave me a beautiful anniversary gift, a lush silver and rainbow bracelet :) I then gave him his, which keeping with tradition was made of steel, 11 years of marriage, and it was a lovely collander (which we also happened to need for all the rinsing of fruit and veg for juicing) and there ensued a long 'discussion' where he helpfully 'suggested' all the things steel related I could have got him that were not house hold objects, how ungreatful I whined, and went to bed grumpy.

Anyway, woke up this am, happy anniversary us :) Still feel quite rubbish but have realised that most of it actually physical which is causing a side effect of general patheticness (is that a word?) and lameness.

Come on though! - I have breezed through nine cycles of Brentuximab and have actually found that after the first few things got easier. However the last month or so I have had irritating general aches and pains, tiredness, now hair loss and I think compromised cognitive function (I am finding it nigh on impossible to make any decision recently). I feel like I am made of lead physically and my brain is of a similar consistency.......blurgghhh! Oh and, this is probably too much information but my menstrual cycle is all over the shop, I am probably menopausal, hurrah.

So, that's me, nothing inspirational happening round here today! Well I better be off and MTFU!

I'll write more when I cheer up

xx

Sun, sun, sun here we come..........

Two  weeks in the sun and then home to the sun! Get in!

I am on the train back from the airport (took the mac with hopes of writing  my book during  cool siestas in the villa – I failed on both the writing and the afternoon rest) We have had a blissful time, reading, eating (it was a total carb fest) drinking and generally relaxing. It feels good to be back though I cannot wait to see Tilly J

Oh yeah, we both read the fifty shades trilogy – disappointed, end of.

I was a bit paranoid about getting  some deathly bug from salad or fish or something. Then I realized on the day we went to a water park that it coincided with the most likely time to have low blood counts and at risk of infection if I was going to be after chemo-lite. The park was packed and I was pretty grossed out by the idea of swimming around in pools of germs and snot,  we still managed to have an ace time though! Oh and obviously I didn’t catch any thing yukky and die.

Unfortunately though, I discovered that I now have anxiety issues about any potential danger, accident death etc. I was properly scared on even the tamest rides. Every slide I imagined me knocking my head, me flipping over and breaking my neck. I mean I have never been one for scarey rides but I have definitely had more guts than this before. I mean, oh my God, when I did that loop the loop in an airplane  I was quite scared, but I just took deep breaths and thought ……well what’s the worst that can happen, oh yeah I might die, ah but I am dying anyway sooooo….it will probably be pretty quick if I go this way and it will quite legendary! Well now I am officially now a wuss.

I also made myself my own laminated medical alert (Alerta Medica) card before we went, very proud of myself, I translated my medical history (Historia Clinica) in to Spanish and even highlighted that I have difficult veins (La vena difficil) Check me out! I am basically Spanish!

Ok am not at all Spanish, I am now shamed by my lack of linguistic talent. You see I would have learnt in the last year but I didn’t see the point ‘cos I was going to die! Yes, that old chestnut! Makes you do things you might not usually do and puts you off things you probably would do, see what I mean?  We are definitely going to Spanish lessons as soon as possible.

Actually I have ended up with an infection, an ear infection though – I spent lots of time under water with my lovely new goggles (thank you Tilly – human Tilly that is not canine Tilly). Yeah it’s pretty painful and usually I would just dose up with painkillers and squirt a garlic capsule in my ear but now I am hyperchondriac woman I will actually go and get some anti bugs from the doc.

I have an appointment in Bristol with the bone marrow man on the 17^th August to discuss options. So I reckon I will be looking at hospital end of September, that’s cool, I can go to my school reunion, see Jesus Christ Superstar and maybe Matilda again (have earnt a special day out courtesy of the fabulous Willow Foundation J) It will be autumn I can wear hats for my baldiness then emerge in the new year cured and lovely!!

Live long and prosper xxx

what now?

I have been contemplating what words of wisdom and insight I could share since being given the news that I am in remission, I have waited more than 2 weeks for inspiration..and disappointingly it hasn't come. In fact it's a bit mundane, the reality of being mortal after dancing with death for a year! I have had to make sure that I keep it real - yes siree I will continue to buy brightly coloured novelty toilet roll 'cos dammit it makes me happy, and yep fresh flowers in the flat at all times are a must! And no I will not fall in to the trap of thinking oh well now I may well live a while I can buy ornaments and furniture to adorne my home...I'd rather have manicures and holidays than a new sofa so no I say and no again..I must not let living change me.

Because in all honesty dying was extremely liberating! Of course I totally get that I was extremely fortunate to feel really well all this time and be able to do pretty much what I wanted so there has been no suffering as such. But the mindset it gave me was refreshing......when you are literally facing death the day to day stuff fails to stress you out, because what's the worst that can happen? Yes dying was my get out of jail free card with endless possibilities....

Oh and another thing, now I have anxiety about all the ways I might possibly die! The certainty of dying from lymphoma had a fairly predictable course which I had sort of got my head round having had plenty of time to think about it, talk about it and well, accept it.....now there's a world of different ways I could die, just the same as other mortals! it's bloody scarey stuff!

Anyway before I risk sounding like an ungrateful twat, I am absolutely blessed, truly. I have had the most amazing year, it's such a shame that we all don't get the chance to take time out from 'real life' and start ticking off our own personal bucket lists. I do feel luckier than anyone in the world to have had the opportunity to live my last year and at the end of it be given my life back! It really is nothing short of miraculous.

Someone asked me the other day how this experience has changed my life, I gave him a pretty lame answer  something about never letting work be everything, saying yes to stuff, having fun.......It made me think, and try and actually condense into a few sentences, well bullet points actually, how it has changed my my outlook....

I have learnt the true value of love and friendship

I am settled for the first time in my life, I know that the grass is not greener on the other side

Life is for living

There are no excuses not to make the most of yourself and your life

Grumpy people suck and will not be tolerated

Do not stay in a job that affects you negatively

Kindness is everything

The NHS kicks ASS!!!

I am not afraid to die, it's inevitable and it's ok!

I will keep moving and active for as long as I can

So, what now? Well I am about to have my 8th cycle of Brentuximab and will continue to do so until, fingers crossed I have a stem cell transplant...... To prepare for the battering my body will get during this process I am getting as physically fit as I can and mostly living on 3 tonnes of fruit and veg a day. However I fully plan to fall off the detox wagon next week when we go to Spain...... you've gotta live a?

Hugs and stuff

xxxxxxx