Mince Pie is it???

Sensitive teeth, Spanish, Mince Pies, Sofa, Blood Counts, Ann Summers, Beanies........

Buenos Noches, I am learning Spanish! I am learning it phonetically so can't write down everything I have learnt, that's my excuse. As I am still so limited with what I can do with my days, it seems a good way to spend my time. And a good excuse to go to Spain again....

Last time I wrote I was all cocky about my blood counts coming up, and then the next test they had basically rocketed and I was feeling very smarmy and bullet proof! But the next time I hit a plateau and I started to realise the seriousness and the enormity of this 'recovery' business. It's hard because there's nothing you can do, there's no overall deficiency of xyz it is purely that my bone marrow is starting from scratch. Apparently strenuous exercise can hinder your immune system but to be fair there's not much chance of  that right now.

Yesterday's counts were on the up again - I now have a neutrophil count of 1!! Oh yeah, I am only mildly neutropenic so although I still need to be careful I have a much lower risk of infection than before. So I have hugged people, seen children, gone nuts!!

I am a bit anaemic, my iron level has dropped in the last couple of weeks and my blood pressure is low so I get really dizzy when I stand up. I have been out walking for a good hour most days which is fine but I am good for nothing when I get home, apart from snuggling up on my groovey sofa :) I suppose cos of the anaemia I am super cold all the time and pretty much live in beanies. That's fine though, I often forget I have no hair and then when I am getting undressed for bed I am like whoah there! Who's that! I haven't felt like wearing any of the scarves I bought, they just feel like cancer badges and I have been there and done that. This is the 3rd time in 5 years I have been bald and I have tried the mad wigs, the realistic wigs the scarves and now I am glad it's winter and I can feel 'cancer incognito' in a nice beanie :)

My friend Sue shaved her head - she looks fabulous, it does convey a certain boldness and confidence. And I can look at her and think wow mine will be like that in about 6 weeks! She raised a load of money toward the sofa, again, people have been so kind and amazing. And seriously it has greatly enhanced my quality of life to be so comfy and snug and not have to be in bed :)

The worst left over effect I have from the treatment is sensitive teeth!! What? I have just had high dose, chemo, stem cell transplant all that! My biggest complaint is bloody sensitive teeth, hot, cold, sweet equals massive pain. Really annoying and very random.

Talking of sweet, why are mince pies so good? How I have I managed to justify them to myself after years of denial? The cream seems to offset the sweetness so not too much pain involved from the teeth. I blame the sofa, just sitting here all cosey and then thinking ooooh I know what would top this off nicely.....So far I haven't put any weight on but I am worried that I will wake up one morning and all the pies have caught up with me and I will be like a stone heavier!

Right, so the other thing I have been thinking about is the fact that I probably will have to get a job at some point next year. Now I need to start slowly and I have had a fab idea! Hosting Ann Summers parties! (tupperware for the bedroom)  How much fun would that be?!! I have never actually been to one here but went to the equivalent in NZ it was awesome fun! Toys all over the place, everyone loved it, I am sure the woman made a fortune! I will put a shout out on facebook to see how much interest there is.

Buenos Noches xxxxxx

It's all about the sofa

I can't believe I have been home 4 days! It's wonderful. I have felt so much better than I expected, although that has had it's down side I think I may have been overdoing a bit so I have reigned myself in and have spent most of today on my AMAZING MAGIC RAINBOW SOFA OF JOY!! Yes thanks to the generosity and kindness of a whole load of people I am now living the dream! My original idea was red jumbo cord, but that's only because I had no idea of the existence of the velvety multi colour vision I am now seated upon, in fact I don't think it did actually exist until a team of fairies made it for me last weekend :) So, thanks to everyone who contributed and to my tenacious little brother who was determined to make this happen. Of course I threw everything off course by being discharged Monday not Wednesday, but I can't help being a little bit magic!

I thought my neutrophils had to be 0.5 before I was discharged but the consultant on Monday decided 0.4 was ok and as I was feeling well I could just go! Wednesday they were 0.6 so I am slowly and steadily creeping up in the right direction. My iron level is 9.6 which I think is fab, especially as I don't eat meat. My platelets are low - 17 and I did have 2 platelet infusions during admission, so I had better not fall off my bike or I might bleed to death, hmmmmm I know maybe I shouldn't ride my bike. So if it wasn't for my baldy head no one would know there was anything wrong, and as its winter I can chuck a beanie on and blend right in! I am on a whole pile of meds still which brings me back to earth. But, really I think things are going smoothly.

And another bit of wow-ness is that my friend Sue decided to shave her head for my 'rehabilitation' cause. She is doing it tomorrow at her children's primary school. Yes I have tried talking her out of it but she is like a woman possessed! What a nutter! But in an amazing way! At least I will have a bald buddy beside me as it grows back! She really is going above and beyond, I mean I have no choice in having no hair, she does - now that is really brave. Hopefully I will be able to post a pic of us both soon.

Signing off now from my fave part of the sofa, the purple chaise longue bit.......mmmmmm.....purple's definitely a good healing colour :)

Love and Light

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TMI??

Check it out!!!! My neutrophils have ROCKETED in 24 hours from 0.1 to 0.3! I rock! They need to be 0.5 before I can come out of isolation and thennn go home! They won’t go down again now but they may plateau a bit before a steady climb upwards.

I feel pretty normal, I spent the whole day out of bed- still ON the bed mostly but not IN the bed so…progress! I have been eating again for a couple of days due to swallowing being back to normal, my mouth not being sore and the general gripey gut horror is over. Too Much Info ALERT - I pretty much didn’t eat for a week and had diahorrea about a million times a day for 10 days (I actually blocked the toilet, oh the indignity, it took 4 separate people to sort it…..think it might be something to do with the luxury andrex bog roll I had bought in which is basically like wiping your botty with a duvet) . So after all this drama I must be all thin and that yeah? No, I lost about 3 pounds! 3 stinking (literally) pounds! Outrage! I am joking, sort of. Sensibly it’s good that I maintained weight and also had enough fat and nutritional stores to see me through. 

It’s been a rollercoaster and I have literally just had to strap in, try not to worry and just wait for it to be over. I do feel like I have been in a weird suspended animation and can't really separate all the days.

So, I will be home within the week. After that I will come in a couple of days a week for blood tests and check ups. I will still be neutropenic , so still at risk of infection when I get home. I have to wait for the neutrophils to come up to normal, 1.5 plus before I can resume normal activities and eat sushi again J

I will have a PET scan a monthish after discharge which will hopefully show no cancer and after that well I just have to stay bloody well!! Go back to work or something daft.

Re my ‘recovery sofa of joy and love’ fund; WOW! I cannot believe the generosity! What massive kindness, truly amazing. My little brother has been amazing as a fund raiser, and I am sending him and hubby out tomorrow to see what the options are! Thank you a million times all you lovely people! And it’s not late, if you want to be a part of the ‘recovery sofa of joy and love’ fund just follow the instructions for paypal on the previous post J

So that is me – day 12 post stem cell transplant, doing just fine. My head is bald and shiney, but hey, I am alive! ooooh and did I mention I am getting a new sofa…..

Lots of Love , sorry for the overshare

Sim xxxx

Definitely less gruff

Plus! I have a dongle! I am online….

I think I am nearly ready to emerge out of the ‘Chemo Chrysalis’ that I have inhabited for the last few weeks. I am still a bald little caterpillar at the moment, with my insides still mushy and rearranging, not compatible with normal life.  But in just a week, all going well I will  use my new wings to fly home J.

I am day 10 following stem cell transplant, I have zero neutrophils – so no immune system. I have needed 2 bags of platelets for clotting. My Iron levels are good though, 9.9….must be all those spinach juices they set me up with good reserves! I have been in isolation for a week, It’s only been today I have been able to do anything but lie listening to the radio, this experience has looked a lot more like the chemo scenes off films, except not as much puking, and a bit more morphine. Let’s just say I used to find my own bottom burps inappropriately hilarious, now they fill me with fear.

My hair started to shed Monday afternoon, so we shaved it. It’s come out really quick and I am pretty bald now, luckily still have eyebrows. I bought some nice little lycra beanie things from cancerforce to keep my melon warm.

Didn’t ever have the energy to finish my ‘Gruffometer’ or my MSFB tool, I think I can safely say that for the most of the last 2 weeks I was off the chart! I still will do them though as they could be adapted for all manor of of ailments. My counts should start to come up in next couple of days, and from then on hopefully just get stronger and stronger.  Projected schedule, December- walk dog on beach bit further each day. By end of January thrash little brother at badminton. End of March, hair growth allowing, back to salsa!! End of April, start training for a ten km run. End of May beat everyone I know at badminton J cool – that’s the next 6 months sorted.

As part of my recovery though, I need a bright colored, preferably red, corduroy sofa, L – shaped. It came to me when I was mid chemo coma, thinking that when I go home I don’t just want to go to bed all the time, but inevitably I will because my bed is uber comfy and my sofa, well, isn’t. So I am blatantly and brazeningly asking for your help to make my wish come true J I have had so much generosity and love sent my way since I have been on this journey, I may well have used up all my cancer chips….but who knows? It's worth a try! I am sending this to my brother to post on my blog and try to sort out a link.

*** SO (hijacked by Sims little brother!)... A new corner sofa is it? This lady obviously needs and deserves it - lets make it happen! Its only a week so we gotta move fast!

I've looked online and a comfy corner sofa, as she has said she needs, will cost around £1000. 

To contribute, please donate your monies via paypal following these instructions:

Login to paypal
Click the tab 'Send Money'
Where it says 'To', type: simmyalice@yahoo.com
Enter the amount you'd like to donate
Click 'Personal'
Click 'Gift'
Then click continue!

Thank you! (end of little bro Alex' blog invasion!)

Loads of Love

Oh, FYI, I totally meant to not adopt sick role in hospital and get dressed everyday and spend lots time out of bed. Well it turns out I AM the sick role, haven't been dressed for a week and am obsessed with comfy pjs. Also have spent most of he time cosey under my rainbow duvet cover :)

Just a quickie...

So, I am day 2 post transplant! Yes, I feel like shite, but I am ok. My guts are sore and I have a hot water bottle permanently attached to me, I have been in bed 95% of the time since I got home yesterday.....but I have felt well enough to surf the net today and even watch some comedy online.

I am being soooo well looked after both at hospital and home, I am so very grateful to everyone around me.

I am struggling to find any humour in my current situation, I just don't have the energy. I am taking each hour as it comes - when I feel awful I trust it will pass, when I feel ok I am thankful.

I have to go into hospital for review tomorrow morning, I may well get to come back home until Monday. When I go back in I will be in isolation while my blood counts rise, once they are acceptable I will be discharged, probably after 2 weeks.

Right, well I am actually managing to bore myself with this post, signing out.

xxx

Not so brave...

16th November 2012

Am home for a few hours!! Hurray Hurrah Hurrooohh! Didn't manage to do anything just slept all afternoon, but it was in my bed it was quiet and comfy no bright lights or bells ringing :)

Feeling frustrated by my lameness, I knew I was going to feel shite but had forgotten quite what that was actually like...still am nearly half way through the chemo, baby steps.

Got to be back in for 8pm and bit more chemo then night night...

Will update soon 

Soon........Am feeling tons better than earlier, on my way back in now. Love and Light :)

xxxx

i AM SO BRAVE RIGHT NOW

15th November 2012

I was in the chapel this morning mediating (that’s just how I roll these days). I was contently breathing lovely white light up and down the chakras with particular attention to the hear chakra. The heart chakra is where the lymphoma resides so  I pour some extra light in there for good measure. It was going well, and then I realized that Robbie Williams had arrived in my head; he was singing ‘come undone’……..”I’m not scared of dying I just don’t want to, If I stopped lying I’d just disappoint you….”

The first part of that line has always resonated with me right through this journey- it sums up a long standing attitude about death. We all have to die, I accept that as inevitable but it doesn’t mean that I want to and particularly not in my thirties, or forties, or even fifties for that matter. However I will tray not to be greedy, the fact I will very probably see my fortieth is bloody ace, what a gift!!

Now recently the second part of the line has been on my mind…..’if I stopped lying I’d just disappoint you” That is how I have been feeling, like I am have made myself put on a front although I was disappointing people if they knew I wasn’t doing so good emotionally, especially as I spent so long untouched by sadness. But looking back on my blog I think it’s pretty clear that my mojo was becoming more and more elusive.

This led me on to considering the concept of ‘braveness’, I have long poo’ed this idea when directed at me, I have often dismissed it with words such as; “I am not brave, I just have to get on with it – I have no choice”. The night before I came into hospital I googled the word brave and I can now inform you that yes I am brave actually. Simply put bravery means confronting pain, adversity etc without showing fear. Which brings me back to Robbie “I am not scared of dying, I just don’t want to”  Despite my lack of mojo, fear isn’t the cause, disappointed in myself yes, mourning my previous life yes, but not fear.

Yesterday’s chemo was horrible, today I have a different on. I don’t know what it’s going to be like but am I afraid, no, why well cos I am brave! No, there’s no point in wasting this moment now when I feel basically fine imagining how yuk I might feel shortly. Will keep you posted.

Couldn’t get to sleep last night (steroids I think) so I spent some time thinking about some useful ‘patient tools’ the first is called the ‘Gruffometer’ the second is the ‘MSFB’ tool.

Initially I was going to call the ‘Gruffometer’ the ‘Shitometer’ but you know, maybe not entirely appropriate (plus it also might be confused with the ‘Bristol Stool Chart’ which I will talk about another time). I first heard the word ‘Gruff’ used by my little brother and his girlfriend when they were trying to convey to one another how crap their hangovers felt ; “on a scale of one to Gruff – how bad is it??” I loved it and now will use Gruff as my measure, thus the Gruffometer is born. I will post a photo of it once I have made it , oh yeah this is a full on project! My mate suggested use of a laser pen so I can point to my gruffness state, someone else will move the arrow, I don’t even have to move unnecessarily and everyone will have a clear visual summary of my needs.

The second project is the ‘MSFB’ tool, stands for make Sim feel better. This consists of  a circle divided into 8 pie segments, again with an arrow in the middle. This would have been extremely useful yesterday when I found it hard to communicate what I needed doing or not doing when I feel massively gruff.

The good news or the bad news??

Well, the good news is I am going in to hospital this Wednesday for my stem cell transplant adventure! At last! Hurrah! This is it, cure time...or else! I was not dealing at all well with the uncertainty and waiting, I mean physically I have felt totally fine; but mentally, not so good. Anyway, now I have had 'the chat' with my consultant, signed the consent and am ready to rock 'n' roll.

So what's the bad news then? Oh that, yeah, it seems I have relapsed.......oh bugga. Yes, since June with the to-ing and fro-ing and appointments, my holidays, dr's holidays, madness virus scare, brain scan, spinal tap....blah blah..lung test, heart test......sometime in the last few months the lymphoma has crept back.

I found this out about 10 days ago, it was not what I was expecting but now that I know what I know- it was a possibility I had considered. At first I was angry (which I have managed to mostly avoid in this whole journey) I was angry that this had all taken so long and if I had been admitted when I anticipated I may still be in remission. Then I was angry at myself that I hadn't just got on with the donor transplant as I would have been done and dusted by now (that hospital didn't mess around..all the pre transplant tests were scheduled on one day). Most of all though I was angry at wasting time being down, I have been low for months and feeling generally depressed and lethargic and shite. I was really cross for feeling that way when I was physically ok, but also i felt guilty that my negative state of mind and non shiney rainbowness may have affected this relapse??

Well, what does this mean in terms of 'the plan' ? Nothing, the fact I no longer have a negative PET scan means I am less likely to be cured by the transplant, by how much? who knows, and to be honest I don't want to know. To me now, I am either in the 'cured' stats...or not! It kind of doesn't matter what the figures are- I just have to believe this transplant will work, and I do. 

The last week I have been uber aware everyday that I wake up that my days of relatively care free days are numbered (for a while). The last few days hubby and me have lived in a lovely bubble of slobbing, veggie sausages, doggie cuddles, walks on the common, hot chocolate in my dad's campervan, and many mini series episodes..........I have new PJs and loads of new marks n spencers knickers ready for hospital (the chick in M&S thought I was nuts! I was just like ".....yeah - I just really like new knickers......")

There we are, there's my update. I want to blog my stem cell transplant experience, for anyone who is interested but mostly so anyone else about to embark on this journey can read first hand what it entails.

Anyway, I am off to eat stinky blue cheese and other yummy things that will be banned for the next few months!!

Hasta luego

xxxxxxx

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

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