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