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

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