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

xxxxxxxxxxxxxxxxxxxxxxxxx

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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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