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 :)

xxxxxxxxxxxxxxxxx

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 :/

xxxxxxxxxx

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 :)