Cancer remission / depression

Oh my goodness! I have been in such a fug (is that a word) funk (american) well just plain depression for too long! I have been on anti depressants since relapse 2 years ago and now..... Yeeha I am alive and yet cannot afford to live..and have lost all the mojo that dying gave me. Spoilt brat? You bet! But I think I am coming out the other side!
On hearing (see last post) that I should be 'making long term plans' I have been freaking out about getting a career, affording to sustain myself in my flat etc. But what has happened is that I have lost sight of life, and I mean actual LIVING life and making what I have been through count! 
But I think I have got it now! And here is the plan......
I need an adventure! I spent my 20's being a mum to a small child, my 30's going abroad to seek (and find) a career, built a house, got cancer, had some personal dramas and now I am in my 40s (thank God) I have none of the above! I have been feeling like I have lost everything, and have been lamenting and grieving and generally feeling sorry for myself!
So....adventure planning...thanks to an inspirational young lady who has just beat Hodgkins too...I am getting my life back on track! And the first lesson from her is reflecting back on the enthusiasm for life that I once had and bloody just doing what you want!! So..Costa Rica here I come! Am already learning Spanish so that's cool..maybe work in a wildlife sanctuary and / or spend time at a yoga retreat but basically..life is ON!!
Long term plan = work towards getting away for a couple of months next year to experience some amazing stuff! And I have come to terms with the fact that I will need to forgo (?word) my material possessions temporarily in order to do so. My mum will look after my dog which is fab, so no excuses. Mney is obviously an obstacle but I am going to start saving, however little so that the Universe picks up on the fact that I am serious!
Also I have just posted on facebook an idea for a business that I am very excited about...

I have a business idea. It's not massive money making but would be awesome. So, when I was 'dying' I spent a long weekend at sacha's house with deb and helen. We went to a show, had dinner in London. Did a 10km run, I was sent up in the air on a bi plane, we had tattoos, fish and chips and champagne on Brighton beach, shared a ridiculously huge bath together, cooked pancakes, danced til the wee hours, watched dvds, had cocktails and manicures and a generally awesome time! What if we could provide awesome weekends similar to that for ladies going through shit times?! Offer accomodation, all meals, pampering, activities out, yoga, reiki.whatever...all commemorated in a lovely photo book. Seek out rental homes that would do us a deal and make bespoke special weekends?? Just putting it out there for opinions... we all know how therapeutic girl time is, and also how when we know someone having a hard time how much we want to do something. My vision would be 4-6 ladies with the spoilt girl going free...maybe a website could take financial donations for the cause and for specific people, it could maybe be a charity based thing with concessions..what are your thoughts FB fam?


So all in all I think life may be looking up!!
xxx

Long term plans?? Life after Brentuximab / Adcetris & Stem cell transplant

“………start making long term plans…” 
that is what my Consultant said at my last appointment. Oh my flipping God! This is MASSIVE! This man is Dr ‘hard facts only’, I love him to pieces, trust him implicitly, respect him hugely. He always accepts my decisions and makes me feel comfortable with them and yet he I would never know if he thought I had done the ‘right’ thing in his opinion. He is highly pragmatic and is comfortable with presenting the facts and evidence but offers little guidance. I have been, at times, frustrated by this but ultimately empowered; I am sure that my trust and confidence in him has contributed to the fortunate position of health I now find myself in. And now here is giving me actual advice!

Anyway, back to the start of the recent consultation. Since my stem cell transplant and subsequent remission I have never asked what my odds were, I figured that a) stats were pretty much meaningless b) I had defied them so far c) I had been told they were poor back in 2011 so despite my successful treatment I figured my odds were about 15-30%. So…imagine my surprise when I summoned the courage to ask my Consultant what he thought, I told him I was finding it hard to move on and plan for the future. After some ‘umming’ and ‘erring’ he offered an intelligent guestimate (as I am a bit unusual there are no hard stats) of more than 50% (Disease free survival in 3 years) or, and I quote, “fairly good”……..well bloody hell! This is properly amazing! And that’s when he went on to say that he advised I “……start making long term plans…”

Since that conversation I have moved into my own flat (first time ever moving in somewhere solo) and applied for a completely fabulous job (fingers and toes crossed!) I am entering a new chapter and it’s very scary and also exciting, more scary right now!

I am still great friends with my ‘sort of’ ex husband and he continues to be a huge support to me and despite everything that has happened we are cool. But now we are learning to live properly separate lives and it can be lonely. I think for both of us our existence has been defined by the lymphoma and other pain for so long, now we are having to negotiate new ground together and apart.

Crazily, life is harder than it was when I was dying! Back then, nothing could touch me….financial problems? Who cares! I look like an idiot? Whatever! Now there are consequences, responsilbilities…..yuk!

And I am approaching 41, obviously awesome BUT I have gone from being a proper professional type person with a snazzy home, respectable income, mortgage, career etc to working for minimum wage (although my job is ace) and living in a little rented flat, alone. Yet I have my health, and it seems a future! So cheers to that.

In other news, loving my Spanish class! Started Disco spin, which is pretty much the best thing ever and the musical I was in last year was soooo much fun...there are lots of fun things happening over the Summer, always something to look forward to.

Om Shanti

xx

Still breathing :)

Blimey it's been nearly 2 months since I last posted. I guess that's because there are no dramas to report...I continue to wake up each morning, keep breathing etc, I have tons of hair! Yes I am very much still alive and (touch wood symptom free). I am back to 'normal'....except I am not, not at all....I am in a weird kind of limbo and it's rather unsettling to be honest, things feel complicated and I am feeling pretty anxious.

Hmmm I am not making much sense, let me try and explain. When death was certain I knew where I was, I came to terms with it, it was a given. Then there was the chance of cure and the stem cell transplant so that was a new and obviously amazing goal. But now, it sounds odd but there is no goal and the future is there (maybe? probably? is it?) but not tangible. I never asked what my odds were going in to the SCT, I didn't and don't want to know as I have said before I am either cured, or not- the odds are pretty much meaningless...the odds were in my favour to begin with when was first treated for Lymphoma, a small chance of relapse....I relapsed. Then later the odds were against me, I was terminal and now I am not...so yeah odds schmods! 

I recently applied for a job, a step towards re establishing some sort of career in healthcare. I have a nice job in the cafe working 2 days a week, but I am feeling like if I don't get back in to something related to my 'field' I might never be able to. I met all the person specifications etc. I really struggled to complete the application as I am so very rusty, this made me sad and scared because this is the type of thing that I used to be able to do without even trying and now I felt like I could barely string a coherent sentence together. Anyway I didn't even get an interview, I am gutted, this is a massive knock. I have got every job I have ever applied for (oh actually there was one I didn't, I applied for an oncology nurse post ironically enough the year I was first diagnosed. I knew sweet F.A about cancer and chemo, I  blahed on in my application something about palliative care and dignified death; which in hind sight was utterly inappropriate). So anyway this is obviously a good learning experience and I need to spend some time on my CV and keep applying for jobs......but...

Here's the but, I don't want to get a full time job. I don't want to leave my dog everyday, I don't want the responsibility or the stress. And yet I do want a job where I can use my professional and personal experience and work to my potential. Also, I realised getting back on the career path is symbolic of believing I have a future, that I am back in the game....that I am going to live. But on the other hand, if I thought I wasn't going to live more than say a couple of years would I really want to spend that time working? Well no I wouldn't. Bloody hell I am soooo confused.

What's the answer? Maybe I should chill out and enjoy life and stop thinking and worrying about the future or lack of it. Perhaps I should just see this year out, get to my one year post transplant and think about it again then. Yep that sounds like a plan, thanks blog!

Thanks for listening xxxxxx

Impermanence

Life is awesome! It's busy and fun and full of cool people and positive energies, yay! It's just over a year now since my remission news and the beginning of stem cell transplant planning, and now here I am 7 months post transplant and it all seems like a distant memory. I have had 2 years off work and it it is 3 years since I last caught a baby :( BUT - I am alive and well so- no moaning!

Yeah! I had a new tattoo, well to be precise me and my dear heart had matching tattoos that say 'impermanence' in sanskrit (I really hope it does say that and not just 'twat' or such like!) Anyway this has been on the cards for a couple of years but have been distracted by imminent death, neutropenia etc! Now here it is and I love it. It sums up for me the acceptance of our impermanence in this embodiment, but also the impermanence of any situation, good or bad - "this too shall pass"

In other news - the new job is going really well, have had a mix of short and long shifts and my energy levels are totally fine, which is reassuring. Bumble and Bee cafe is the brainchild of my best friend from waaaay back and it is basically a fab place to be (or BEE lol me!) I could not have asked for a more lovely way to ease back into work. 

I am also doing some online study on my way to a career as life coach / nutritional advisor / NLP practitioner....so watch this space :)

Unfortunately my cafe work has ignited a new found passion for baking and uber breakfast recipes......which is fun, but massively fattening! Therefore another juice fest is on the horizon....I still believe that we can have it all... literally! Surely, juice 5-6 days a week and then have an epic eggs benedict at the weekend, that's ok, right? 80/20?

So - I hav been feeling fab apart from an irritating dull ache in my right shoulder and arm. It had been going on so long I started to get worried and asked for a scan....however (touch wood) my little brother with his newly flourishing massage therapy skill seems to have cured me! hurrah! so I may well cancel the scan!

LOOK at my dog! she is properly ace! Look at the wisdom she radiates! Yeah anyway just needed to share :)

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Yessssssss!!!

Check me out! back to work, oh yeah!! Just done my first shift at Bumble and Bee Cafe (What's that? New job? At my best mate's cafe? And working alongside my little brother? whatever!) Super cool day, soooooo busy but y'know baptism of fire and all that!

I am sooooo flipping grateful for my life! had an awesome day, eventually when we packed up we walked along the seafront, stunning, to the pub and sat overlooking the ocean with a glass of fizz, debriefed about the day whilst the kids ran wild :) sweeeeeeeeeeeeeeeet!

I am disease free, I am grateful, I am massively happy. FACT!!! Oh - and my mum is moving back to Exmouth, how civilised! It's all good!!! I definitely need to buy a lottery ticket!

Oh no - back at work tomorrow, bummer :/

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WTF

• Er - menopause! WTF
• Relapse fears / Consultant appointment
• Hair update

So yeah, it's official (ish) I am menopausal. This is no surprise as a) is expected side effect of the pre stem cell transplant chemo b) I haven't had a period (TMI?) since the end of last year and c) have been having crazy hot flushes and night sweats. But you know it still kind of sucks! I am barren- fact. No longer a woman! Yeah yeah I know but at least I am alive, obviously that's brilliant. And I do have a child, my six foot, nearly nineteen year old blue eyed boy :) However - it still feels like something has been taken from me too soon, so- blurgh!

Now the relapse fears kind of link up with the menopause dramas because of the bloody night sweats, which are a symptom of the flippin' lymphoma.......take your pick! So, today I had blood test result indicating menopause and that's very probably to blame for the sweats, probably but who knows? Unless I have another scan....who knows? I have NO itching which was another symptom but I do have an odd painful 'twinge' in my tumour site. I like to think of this as a tumour ghost or echo - kind of a phantom limb type affair. So I saw my Consultant today and we decided that mmmmmyeah well could have a scan if it's totally doing my head in but, mmmmmmyeah I am probably fine so it's up to me. For the moment I have chosen to leave it be. It's weird though, sometimes the reality of possible relapse smacks me in the chops and I am like OH SHIT!! But I don't talk about it day to day 'cos I don't want to make it real and also I don't want to scare anyone......It's a weird limbo reality.

I am now naked head wise in all situations, it's very dark and very soft. Here I go again re- enacting the person who has the confidence to have a buzz cut! It's all good, I know it will grow fast now. By the time I start actual work in May I will look kind of normal. Really looking forward to work, it will be a challenge but fun and good reintegration in to life. My energy levels are fab at the mo, I worked out that I am spending around 12 hours at the gym a week in various activities and pretty much keeping up. The only time I have been tired was after a couple of days at our new allotment digging and stuff, but how worth it will that be come summer when we are munching on our organically grown with love carrots :) Happy days!

Right, must fly, I have a chat and nail painting session to go to.

Be happy

xxx

Off with her hat!!

Ok so I did it!!! For the first time, yesterday I took the hat off! In public! In my spinning class! Shit! It HAD to be done I was sweating like a sweaty thing! You would think after THREE times of losing hair I would be used to this unveiling but no, it's hard for me- fact.

And today,  I did it again, first in pump class then pilates.....so that has to be it I spose, no biggie - just me, no hair, whatever. It's so daft really I know, I don't know why I am so self conscious, I mean it's pretty darn obvious I have no / little hair and thus am cancer chick which is why I have been wearing beanies around town constantly for the last few months but still it's hard. It's crazy, I mean the other day in class, 2 of my peers had cancer support T shirts on - yet I still didn't have the guts to reveal myself as actual cancer person. I am unhealthily obsessed with shaven headed celebs in the desperate hope that their profile will reduce stigma of women like me.

I have to get used to it, and soon, I will be working in a month! As well as the cafe work I am looking into festival medic work, yay - how cool would that be!? Get to go to all the festivals this summer and hang out waiting for someone maybe going in to labour.... This has also led me on to thinking about some voluntary overseas work in midwifery.......we will see. Life maybe starting to take shape, things are good.

Peace

x

Back to life....back to reality

Day um lots since stem cell transplant......and I have to say life is starting to feel somewhat normal, whatever that means! Well hang on what does it mean?

• I have comparable energy levels to those around me
• I am starting to sleep better (without drugs)
• People aren't doing everything I ask (Doh!!)
• I am starting actual work in May (Eeeeek!)
• I have been doing weights at the gym, yoga, pilates, badminton..
• My hair is growing....at last
• I am about to turn forty! Yay!!!! I made it!!
• I am able to think about the future, because I have one!
• My port scar is healing

So, yeah it's all good :) It's been hard though, adjusting from being officially dying to a solid remission, possible cure. I have been living outside of the normal rules of life for sometime now and I am having to consciously ease my way back in.

I had a period of feeling quite down, and I was so cross because I 'should' have been ecstatically happy to be alive and yet all I felt was that I didn't belong. I still feel like I don't really fit in, I am yet to find my new place in the world, a new identity. But I have chilled out about it a lot and have come to peace with taking baby steps and for now just looking at the next few months and not stressing about what I will be doing in a year or two or however many. I am on borrowed time, I know that. It totally spins me out that I am alive, it hits me every now and then and I am like OMG I shouldn't be here, why am I here? And then, obviously, thank God I am. Strangely enough I am more scared of dying than I ever have been, I guess that's because I have been so close, like up close and personal and I know death, like an entity death is more real to me now. And also I feel like I am the proverbial cat with 9 lives, I must have used them up by now, you know - next time it's curtains! 

Despite a tangible awareness of mine and others' mortality I still find my self sweating the small stuff, or obsessing over the superficial. This disappoints me but it seems that my ideal self is still going to take a lot of work and doesn't just automatically reveal itself and take residence merely as a consequence of what I have been through.

I made a list about a year ago of what I was grateful to cancer for.......I can't find it but I remember it being quite long. I need to review my gratitude in light of the events of the last few months, what is clear is that living consciously is so important in order to stay in the moment and cherish life and love. We know what's best and healthy and nourishing for us but we have to revisit that knowledge regularly or things can slip. 

On that note I am off to rewrite my gratitude list :)

Om shanti om :)

PS

Went to London last Thursday to see the show Matilda again, it was super bloody amazing! Massive thank you to the Willow foundation for my very "special day out". The show has a very special place in my heart - I ent with my family last year to see and to go back was like closing a circle. I hope I have just managed to put a link to the song "when I grow up" on my blog, I listened to this when I was waiting for my stem cells to arrive and be infused, it resonated with how I felt and I shed some tears......love it. 

When I Grow Up - Matilda the Musical (Original Cast Recording)

Reflecting on remission

Complete remission!

It's been 2 years since I relapsed, 18 months ago I was given 6 months to live. In the last 2 years I have had 3 different courses of chemo, got into remission and slipped out of remission whilst waiting for a stem cell transplant. 

It's been just over 2 months since my stem cell transplant and the results of my PET scan show complete remission. Now this is a bit more exciting than the last remission because this latest treatment was potentially curative, whereas when I was in remission after Brentuximab last year without transplant we knew it would come back........and now there is a chance that it won't. I don't know the stats, I know from experience that there is no point sweating over stats, I am happy to be a deviant.

I am still recovering from the transplant physically, and mentally I am still recovering from the insanity of the last 2 years. It's time to start reintegrating into some kind of 'normal' life, but I am now needing to forge a new life, I can't go back to my old one. In my old life I had just got my  UK midwifery registration back and was looking for a job and making plans to work for a while and then having another adventure. I never intended to stay in the UK - I was Australia bound. 

In my new life I am not going anywhere! And that's fine, my feet don't itch for the first time in my life! I cannot see myself going back to midwifery, the hours, the stress, the whole thing. Midwifery is not something that I could do part time, I need to be really in it, full time. So, I have accepted that. It's really sad, and I do miss it terribly. I can't watch 'one born every minute' or 'call the midwife' it reminds me of what I can't do anymore.

There's no panic, I don't need to decide right now what I am going to do but it is scarey. I have been outside normal life for so long I feel incompetent and unconfident in actually functioning like an adult in the outside world. It's also exciting and liberating to have the chance to start again, I am sure I am not the first person to experience these confusing and contradictory emotions.

I feel that I need to give back, to try and balance all the kindness and love that has poured my way. I am not sure how yet, and in all honesty right now I don't feel like I have anything to give, having any kind of commitment in my day puts me in a minor panic!

Anyway, that's enough navel gazing for tonight :)

Love and Light

Sim xxxxxxx

post stem cell transplant ......recovering...

Day 63 post stem cell transplant, crikey! In some ways it's gone super fast and in other ways well...it hasn't! 

Christmas was busy and my counts were recovering uber fast, I was feeling pretty good and I was excited to be able to socialise. Looking back I over did it and it wasn't much suprise that I was admitted to hospital on New Year's Eve with an infection. That night I felt properly ill and it was quite scarey, I was vaguely aware of fireworks at midnight but I was pretty out of it really. The main concern the docs had was that it could have been an infection around my portacath, so they hit it hard with intra-venous antibiotics. In the end they concluded it was probably a virus, it felt like it was probably flu, which I haven't had before. Three weeks on and I am finally feeling fully well, but it definitely set me back so I have been very much taking it easy. Actually that's not strictly true a week ago I went to the gym with a friend and she was talking me through some squats and we did some cardio, two days later I played badminton and then basically couldn't walk for about 4 days, but apart from that I have been taking it easy, honest. 

I am still pretty bald although I do have about 2mm of baby hair, but it only covers maybe 70% of my head so it's not the real deal. It is dark though, I thought for a little while it was looking grey which I wasn't ready for at all!

I had a PET scan today, the consultant will call me in about a week with the result. If it's clear I don't have another scan unless I develop symptoms, I will have check ups every 2 months for a year, and then less and less subsequent years. If I see 5 years I am said to be cured. If the scan's not clear I will have to start bucket list take two! Anyway, it's totally clear, of course it is :)

This April I turn forty, I am so grateful! No party, no fuss- just waking up and breathing and being bloody forty is soooooo amazing.

The future is hard to see because it's so uncertain, but there are so many people in a similar situation and I know I will learn to live with uncertainty and also make plans; but at the moment that seems impossible so I will just take each day as it comes.

In other news, I have started singing lessons, oh yeah! Watch this space! I am fully going to audition for the local musical theatre group this summer! Ok, so that's an future actual plan, cool, good start !!!

Hugs :)

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. 

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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 :)