whatever

Waiting, waiting.........

Ha, I should rename my blog 'Love, life and LIMBO!'

I am still awaiting an actual date for the stem cell transplant, now sensibly I should...'should' be living life to the full, embracing every moment of non 'feeling crapness' but I am kind of on hold to be honest. I know, I am rubbish.

I have had an echocardiogram which was fine (yeah I have a lovely heart :) - nice) Then last week I had a lung function test, seems to also be fine,  although trying to get   info out of the tester dude was like getting blood out of a stone! He seemed truly perturbed that I would ask if my values on test were in normal range, weird.

Today I finally got an appointment for another PET scan, so that we have a proper baseline prior to transplant. Scan is the 25th October so in my reckoning I will be in the following week.......or will I? I have been saying "yeah yeah a couple of weeks" for flipping ages!

Thing is - I have had so much time to think about it that now I am getting scared! I really wasn't scared a while ago. It's quite stressful as well cos there seems no sense of urgency from the medical bods, and I kind of feel if I said, aww actually let's not bother they'd be like, ok - whatever (this is emotional me talking, I don't actually think that).

This is no fun at all, the longer I am waiting the longer before I am done and dusted and can begin to move on. Anyway, I will stop whinging, I am lucky to still be here.

I was planning to have a last blast this week of sushi and cocktails (both of which will be banned for quite some time) but I actually just can't face it. I just want to hide away til it's all over...

Ok - promise to stop moaning now!

Om Shanti

x

What's the buzz? Tell me what's a happenin'.......

Jesus Christ Superstar reference there.......anyway......

Right! Yes! Decision made!

Autologous (my own) stem cell transplant - I will be admitted to hospital within the next month, I will have a chemo cocktail called BEAM which is given over 7 days. You start at 7 and count down and on day zero you have the actual transplant. Pretty space age sounding a? The chemo puts the immune system to zero, nada, nuffink. Then the stem cells get put back in and immune system starts to 'grow back' , once blood counts acceptable I can go home - usually around 3 weeks from day zero. Because I am made of magic and have fairies on my side I will obviously be home and fit asap.

In the old days there would have been a prolonged period in proper isolation, now they seem to focus more on sensible universal precautions in and out of hospital, soooo

• No little kids to visit (they are just walking bug towns)
• No flowers, pseudomonas bacteria = baaaaaaad
• No unpeeled fruit / veg / salad
• No uncooked fish / soft cheese / runny yoke eggs
• No ill adults
• No doggy in the bed - :(
• No crowded places / indoor places (salsa, gym, shopping etc)
• No manicures / pedicures

The above will be hard, but I will still be able to walk on the beach, eat bananas, have foot rubs..........(won't want head scratch cos will be bald as a coot!) 

I believe in this, I really do think this will cure me- and that is the main thing for me, as I have talked about previously -  statistics are not always helpful. By the time I am forty - YES! FORTY! - I will be back in the game :) I am almost looking forward to being sensible and sedate, who knows!?

And, you know, if it doesn't - well, it's been a flippin blast.

My MRI scan was normal- hurrah!!! So I had Brentuximab numero 10 last week. But to make double sure I was all clear had a lumbar puncture on Monday (spinal tap) to test the spinal fluid for the madness virus (PML). Ouch! Poor me! Registrar was sooo awesome though so that was cool - the whole experience re installed all my faith in my ace team.

Having missed a treatment and then late it was 7 weeks between the brentuximab, so it was almost like going back to the beginning a bit and it kicked my arse. But I did manage to do the 10km Jurassic run 2 days after (Horrible!!) so it can't have been that bad :)

Well that's nearly all my news! Apart from- this Friday , 8 of us are going to London to see the Arena production of Jesus Christ Superstar! It's going to be epic!!! It's my fave musical EVER and the fantastic Tim Minchin is Judas!! Thanku universe!!!! Oh and obviously thanks mum for credit carding it months ago when we didn't even know if I would still be here to bug you all!! haha!

Massive love

xxxxxxxxxxxxxxxxx

Am I making any sense?

Last Wednesday I went to chemoland to get bloods done for the next day's treatment and to chat with my Consultant about the appointment in Bristol with the bone marrow team I had a few weeks ago. 

I was keen to get on and have chemo because I missed the last dose,Brentuximab number ten, cos I let it slip I was a little concerned about my mental function (difficult to assess I know). Anyhow, he was hoping to have my brain scan results back prior to our last meeting but I hadn't actually even had the scan.

Consequently, there was to be no chemo without the reassurance of a scan that shows I am not going mad. The consultant didn't have time to discuss my stem cell transplant decision making. Whilst he was telling me he didn't have time to talk to me a nurse I had never met, nor introduced herself to me, stabbed my port for bloods. Whilst she was attaching her tubes and I was trying to pin the consultant down to a plan before he ran off. I then had to question whether I needed the bloods done at all, er no he said. Ok so out with the needle, she asked if I wanted a plaster I said yes, she gave me a swab to press on it and never came back. 

I went to the desk to make an appointment for the following Thursday (tomorrow) by which time we are hoping there is the MRI result so I can have chemo and have proper chat about transplant. The nurse never came back with the plaster. I had gone up to the hospital for no reason, I walked out the unit bleeding a little bit from my port and trying not to cry.

I know! It sucked, right? After my appointment in Bristol and all the thinking I have had to do and all the faith I put in my team to start to come to a decision I felt so let down. I have to put this into context this was my first really negative experience, and I was highly anxious cos I am just wanting to set a date and stop bloody missing treatment in case I eeeeeeeek slip out of remission! Damn! Shouldn't have mentioned my stupid memory!

So, I had my MRI scan on Monday which went fine, only took about 10 minutes. You have this perspex box thing over your head and they give you headphones to wear cos the actual scanner is really noisy. Also you get a panic button in case you start freaking out and getting all claustrophobic or something. I nearly pushed the panic button when they started the scan and started blasting Adele in to my ears! Nooooo!! I asked if I could have a photo of my (awesome) brain, so I can frame it and hang it on the wall, you think I'm joking! I can apply for a copy through my consultant, cool. What's not cool is that standardly it takes 7-10 days for a result. So yep you've guessed it I may not be treated again tomorrow. I have hassled the secretary to see if Dr can push result along, I was told today that I would be discussed at the multi disciplinary meeting and to keep my appointment tomorrow, so who knows?

Maybe I should start kicking off, but it's not my style, I don't really believe that it will help. I don't know though I am pretty stressed about it all. Probably knowing me I will just cry if they delay it again. Deeeep breaths....

It's doing my head in now, ever since Bristol I have felt in limbo and totally lost my mojo. I haven't even been to salsa, cos I have been all like - well soon I won't be able to go for aaaggges so what's the point? Rather than normal me going yayyyy squeeze every last bit of life out of life!

On a positive note! Hurrah! Me and deb signed up for the Jurassic 10km this Saturday (more accurately she totally sorted it out cos I am too lame to do shit at the moment) 

Ok, well keep your fingers crossed, I promise to try not to cry tomorrow! Am I making any sense? Am I nuts or just anxious? I dunno!

xx

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