Countdown to BMT! [Archive] - Page 3

squirrellypoo

Mon Oct 18, 2010, 11:24 AM

Thanks for the flattery, everyone!

I had a haematology checkup today and both my nurse and doctor agreed that the gynae/endocrine doctor situation is unacceptable so both are on the case to see if they can get me seen by a new doctor any quicker than Christmas (my next scheduled appointment from the retiring doc). Other than that, everything's fine, so they're sending my GP the go-ahead to get my immunisations started in a few weeks (but I'm ringing my GP now to get the flu shot before bugs start going around so we don't have to wait for the letter). I'm also getting the standard bone density scan, but she doesn't think that'll be a problem, and she's waiving another lung function test since, as she put it "you're a runner so clearly you've not got lung issues!". :)

Next checkup in THREE MONTHS! woo! and I got to show around wedding photos on my iPhone to absolutely everyone, too.

On a different note, have you read about or considered natural bioidentical hormones for the gyno problems?Without going into too many details, that retiring gynae/endocrine doc has said that he doesn't think I need total hormone replacement and that he thinks I'm still making some hormones so only a little bit is needed. Whether that's actually true, who knows. But HRT is not on the cards right now.

Laura

Mon Oct 18, 2010, 08:32 PM

Hey Melissa,
So glad to hear your apt went well and wow three months until your next apt!!! That is crazy wonderful! So glad things are going so well for you.

Hopefully they can get the gyn stuff figured out too.

Laura

squirrellypoo

Thu Oct 28, 2010, 06:17 AM

A small victory for me: yesterday was the first day I've gone running AND gone to work in the same day since before I got ill. Pre-wedding I was only working four days a week so I would just run on my day off (usually Wednesday) and Saturdays. But I'm back to work full time now so I tried just a short run (6km - it's short for me!) to see how I felt for the rest of the day, but I really didn't feel any more tired or braindead than usual by the evening so I count this as a success. :) One run a week juts wasn't working for me so I'm very happy to see I can get back into a workweek routine of sorts.

Greg H

Thu Oct 28, 2010, 09:27 AM

Hey Melissa!

That sounds like a pretty big victory to me. It's nuts, but I find that I have so much more energy when I can fit in my bike ride every day. I haven't for a week (family-related travel and work complications), and that has me feeling much more draggy than when I'm on my daily exercise routine.

Way to go!

Greg

Laura

Thu Oct 28, 2010, 01:36 PM

Melissa,
How do you have the energy? I am envious.

I had to scale back work to only working part time as I just couldn't handle work. Didn't have enough energy. And on days I work I can barely make it through the door at night and crawl into bed exhausted.

What's your secret?

Laura

mausmish

Fri Oct 29, 2010, 12:06 AM

Congratulations, Melissa - an impressive victory indeed.

squirrellypoo

Fri Oct 29, 2010, 06:31 AM

How do you have the energy? I am envious.Well, my work is a desk job, for starters, so I'm not on my feet all day like you are! And my body's not busy fighting off any infections like yours is so it's got more energy to devote to other activities.

Other than that, I get a lot of sleep at night (9 hrs usually, but I've always been that way), eat very healthily with 90% organic fruit & veg, no red meat, and nearly always homecooked meals (just because I really like cooking), and like Greg, I find I have more energy when I exercise. I always think of it as "you've got to give energy to get it". So I walk to work and back most days (2mi/3km, 35min each direction - I use it as my Radio 4 podcast unwinding time), and I'm running twice a week and doing an awful lot of hefting stuff around the moorings, too.

I think it also probably helped that I was *really* fit before I got ill - I'm not anywhere close to my muscle tone and endurance pre-illness, but I'm okay with that now. I'm trying to be nicer to myself and not feel quite so guilty if I run to a lesser bridge one day, or sleep in a bit later, or have ice cream now and then. :)

PJ1972

Mon Nov 1, 2010, 09:47 AM

Good to read all your stories and advice, i am due to go in for a bone marrow transplant very soon, at Kings College in London under Prof Marsh. I have had AA for 21years. My donor is coming from the US , i must admit i am very anxious.
Any advice would be great........... Take care all

squirrellypoo

Wed Dec 1, 2010, 06:17 AM

Good news: I had zero hospital appointments during the month of November.

Bad news: I am still doing battle with the awful, negligent, and incompetent gynae/endocrine department, and last night I was very down about it.

My husband sent me a link to this XKCD comic (http://xkcd.com/828/) this morning, and I really think the message is a great one that WE SHOULD ALL READ! (Really, go take a second to have a look, it'll make you feel better!)

Greg H

Wed Dec 1, 2010, 07:58 AM

Hey Melissa!

That is absolutely outstanding!

Thanks for sharing it.

Greg

Laura

Wed Dec 1, 2010, 12:03 PM

Sorry that is still an issue! I can't believe they aren't trying to help better.

But I do love the comic!

Laura

mausmish

Thu Dec 2, 2010, 12:43 AM

The comic is great. Thanks for the link. Having the continued problems stinks though!

starz

Thu Dec 2, 2010, 01:23 PM

Lots of good laughs in that comic! Are you used to using the 'my husband' thing yet? Whilst Kings is lovely it must be great to have a whole month off. We are back at home now, and there are no hosp appts scheduled as its difficult to get there for Nick. However he does still continue to show small improvements everyday, which bucks the trend for PML.

squirrellypoo

Mon Dec 6, 2010, 08:52 AM

Ughghhhh day four of an awful colf/flu/fever whatever. It came on SO quickly Thursday afternoon, and I've been stuck in bed all day Saturday and Sunday. I utterly HATE IT. I have so many things to do and get done and think about and I HATE that I'm pinned here flicking through the awful tv channels yet again. Boooooooo. Headache, snotty nose, barking cough, sneezing, aching muscles, high fever (38.8C/102F), the works.

Today I was forced to leave my bed to go to hospital for an existing dermatology appointment (my husband drove me in since walking to the bus stop was a bit iffy) so I got looked over by the haem doctor on duty, who reckons it's just a really bad cold or flu. But they swabbed me just to make sure, so I'll find out if anything grows on the cultures in a few days. Until then, more BORING AWFUL DUVET. I am really, really sick of this. Last night I had trouble sleeping for stressing about all the things that need doing and all the timelines I'm up against, arrrrghhghgh. I really can't afford to lose four whole days right now.

Even when I came home right after the transplant I wasn't as useless as I am with this! I could at least cook dinner and sit upstairs and work in my sewing room then!

(yes, I know I'm acting like a petulant, moping child here. Humour me.)

mausmish

Mon Dec 6, 2010, 11:30 AM

Aw, so sorry you're feeling just wretched. You have every right to be petulant and moping. If I were a bit closer instead of across the big pond, I'd come and mop your forehead with cold compresses and sing silly songs off key. Take good care of yourself and try not to fret about unfinished work. It has a way of still being there when you're all better, and usually there are no earth shattering consequences for a few days delay, frustrating as they are. You are the number one priority! Big hugs, Karen

Laura

Mon Dec 6, 2010, 07:23 PM

Melissa so sorry to hear you are under the weather! Feel better soon! As Karen said, don't worry about all the stuff that needs to get done. Just take care of yourself!
Laura

squirrellypoo

Tue Dec 7, 2010, 04:56 AM

Turns out I was right to mope - the dr just rang to say I tested positive for swine flu! Oh joy of joys! This is after having the flu vaccine that supposedly contained H1N1, too. Boo!

So now I've got to get the bus back into kings this morning to pick up the tamiflu, I've been told to stay home from work this week so the office have to bike my office laptop over to me (beautiful timing - tomorrow we launch after three YEARS of solid work!), and James was starting to cough last night so we don't know if he's got it now, too.

And I'll miss the office Christmas party on Friday. :(

But mostly I'm laughing. Some times, what more can you do??? (and also, having had both now, I can safely say meningitis makes you feel a thousand times worse than swine flu!!)

Lori Patrick

Tue Dec 7, 2010, 08:05 AM

Sorry to hear you are ill. Hopefully the Tamiflu will make you all better quickly!

Greg H

Tue Dec 7, 2010, 01:25 PM

so the office have to bike my office laptop over to me (beautiful timing - tomorrow we launch after three YEARS of solid work!),

Melissa,

Ack! the flu of the swines. So sorry to hear it. And aren't you having lousy weather, just to make matters worse?

But what are you launching? Some hot new website that will revolutionize the way we all communicate? Will we all get to see?

Inquiring minds want to know!

Hope you start feeling better!

Greg

Laura

Fri Dec 10, 2010, 09:03 PM

Oh that stinks! Feel better.

starz

Sat Dec 11, 2010, 06:09 PM

Hope you get better soon. I need to get my vaccination done, but Nick cant have it yet. X

cathybee1

Mon Dec 13, 2010, 06:51 PM

Melissa, hoping you feel better soon. And that the vaccine will make the course of this much milder than it would have been otherwise.

squirrellypoo

Tue Dec 14, 2010, 05:38 AM

I dragged my sorry arse into work today. I was just so sick of staring at the walls and I couldn't bear it for another day. Yesterday was the first day I could actually just sit up all day. :(

And thanks for the encouragement, everyone. I personally think the vaccine did absolutely nothing for me whatsoever and that the swine flu I have/had must be a mutated variant that they didn't anticipate in the flu vaccine. Because I honestly cannot contemplate how anyone could've had a worse dose of swine flu than what I've just had. I can completely understand now how people die from this.

Laura

Tue Dec 14, 2010, 07:33 PM

Oh wow! Try not to push yourself too much!

Laura

squirrellypoo

Fri Jan 7, 2011, 05:46 AM

So I'm running another 10K race this year for Anthony Nolan (the UK's bone marrow registry charity) and I told AN's press office that I'd be happy to do interviews or photo ops or whatever to try and raise awareness and get more donors on the list, and apparently the response to sending out the press release was "rather high". The first interview looks like it's going to be for That's Life (http://www.thatslife.co.uk) magazine, which I find incredibly funny. :) I'm hoping this might reach a bunch of women that may not know anything about bone marrow donation.

The two main things I'd like to get across to people are:
1. Donation isn't the horribly painful procedure it used to be - if you can handle giving blood, you can handle donating marrow
2. Being on the organ donor list does NOT put you on the bone marrow donor list, it's a separate process

Oh, and I'm back to normal (well, my normal) after the swine flu now. Luckily no lingering coughs!

Greg H

Fri Jan 7, 2011, 10:33 AM

Melissa!

That is absolutely super! Very very nice of you to be willing to do this. I bet it will in fact really help promote awareness.

Way to go!

Greg

Neil Cuadra

Fri Jan 7, 2011, 02:59 PM

That's Life looks rather sensationalist, but that may be just what the doctor ordered. Get your message out there and cause a sensation! :)

Laura

Fri Jan 7, 2011, 08:23 PM

Awesome!!! Keep us updated on the process!!!

Congrats!!
Laura

squirrellypoo

Mon Mar 28, 2011, 07:33 AM

Whoa a full two months later...

Anyway I've not had anything major to report so I haven't posted, but my birthday was on Friday so I thought it was a good point to post. Two birthdays ago, I'd just finished the embryo freezing, was very ill, and waiting on my transplant... And last year I barely had any hair, had severe acne, and still had to be crazy careful around coughing people. So not bad of an improvement this year (18 months post transplant)!

Here's my birthday photo from my sewing site:

http://www.fehrtrade.com/images/2943.jpg

My only ongoing issues are with my hormones, which are just bad/nonexistent/whatever. I've finally been referred to the gynae/endocrine Early Menopause clinic at Guy's hospital, after being totally ignored for a full year at the pathetic King's gynae/endocrine unit, and I'm now being seen by a Prof at Guy's, and I get the feeling that everyone there actually cares. Which is a nice change. The only problem is that I have to go hormone cold turkey for 3 months in order for her to see what's going on without the pill masking it, so I'm currently at hormone ground zero. Thankfully it's not been too bad, but I've noticed a few acne spots on my chin since I stopped, so the dermatologist is going to have fun with that (she's had me on Accutane for ~5-6 months to deal with the hormone-related acne).

But it least it feels like we're trying things to tackle the remaining issues, rather than just sitting around doing nothing, quietly suffering, so even these problems are an improvement if they mean they might lead to a proper understanding of my hormone issue...

Blood-wise, I'm totally normal and have been for so long that they don't even tell me my numbers anymore!

mausmish

Mon Mar 28, 2011, 10:11 PM

You look fabulous, Melissa! Happy to hear you're doing so well and hope the hormone issues are sorted soon. Karen

P.S. Belated Happy Birthday!!!!

Lori Patrick

Tue Mar 29, 2011, 07:16 AM

Melissa, Great News! You are an inspiration to many. Keep up the positive attitude and the improvements! Lori

squirrellypoo

Tue May 17, 2011, 07:31 AM

Just an update since I had a HOP appointment yesterday and my last visit there was 5 months ago!! :eek:

Not to brag, but my blood counts are awesome:
Wbc 5.02
Hb 13.3
Plt 289
Neuts 3.6

One of my liver results was a bit high (I have a feeling the two big glasses of Pimms & lemonade the day before were to blame) so I've got to repeat that in two weeks just to make sure it was a blip. Other than that, I've just got my ongoing gynae/endocrine/hormone/menopause issues and the related dermatology stuff, but day-to-day I feel absolutely great.

My big 10k race is in two weeks time (30 May) so I've upped my training mileage for that in addition to the 6km walking commute I do every day to work. I've linked my fundraisng page in my sig if you fancy giving some money to the Anthony Nolan Trust (the UK's bone marrow registry charity that found me my match), but I'll give a full report in the Events forum with my race time after I'm done. I definitely want to beat last year's time (53:48), but I'm aiming to try and beat my pre-illness personal best (51:13). In a spectacular, perfect work, I really want to break the 50 minute mark, but I think that might have to wait a few more years!

squirrellypoo

Fri Jul 8, 2011, 10:44 AM

Woooooooo!

Happy rebirthday to me, happy rebirthday to meeeeeee!

Two full years! :eek:

My husband's taking me out to dinner tonight and I'm celebrating with a good long run tomorrow, a bunch of baking, two parties, and helping the Anthony Nolan's cheering section at a race on Sunday. So a normal weekend for me these days! :p

Neil Cuadra

Fri Jul 8, 2011, 10:50 AM

Melissa,

Has it really been 2 years already? The time zipped by as fast as you in a 10K!

Congratulations!

mausmish

Fri Jul 8, 2011, 11:20 AM

Woo hoo, Melissa! A great cause for celebration. Thanks for being an inspiration to us all. Karen

Greg H

Fri Jul 8, 2011, 12:23 PM

Right on, Melissa! Happy Re-Birthday!

Greg

tserdogan

Sat Jul 9, 2011, 02:20 AM

Happy rebirthday Melissa.

starz

Sun Jul 10, 2011, 03:26 PM

Happy rebirthday, great news. Hope the celebrations werent suitable for a 2 year old!
Starz

Laura

Sun Jul 10, 2011, 08:15 PM

Sorry I am late in saying this...but I was thinking of you!!! HAPPY SECOND BIRTHDAY!!!!!!!!!! I hope it went great!!!!!!!!!!! Good luck on the race...or should I say...I hope the race went well!!!

Laura

squirrellypoo

Tue Jul 19, 2011, 05:21 PM

I've just been to my GP this evening and had a surprise - apparently the blood tests he'd ordered earlier this month showed that I still have immunoglobins for MMR *and* varicella! So it's great that I'm spared a few jabs and the private prescription fee for the chicken pox (it's not a standard vaccination in the UK), but I just can't get my head around how I could still have the immunity post-transplant... Has anyone heard of this happening before?

squirrellypoo

Thu Jul 28, 2011, 07:35 AM

Just a small update:

1. A gynae scan today revealed I no longer have PCOS. Though a BMT seems a bit of a drastic step to cure it, it's a nice side-effect...

2. One of the haematologists spoke with a virologist about my having immunoglobulins for MMR and varicella, and

The feeling is that the immunoglobulins detected are most likely have been transferred from your donor. This is recognised to happen in some patients post-transplant. However, there is concern that the immunoglobulins which you have may not be as effective or may wane with time. It has been suggested that it would be best that you receive just one dose of primary MMR vaccination as well as the VZV vaccine to be safe and we repeat the immunoglobulin levels thereafter.

So I'm taking a prinout of the email to my GP tomorrow to try and book my jabs again...

Laura

Sun Aug 14, 2011, 02:53 AM

squirrellypoo

Wed Sep 14, 2011, 05:12 AM

Just a few updates:

1. I've got five more days to go on the isotretenoin (accutane) to finish the course, even though the hormone-related acne has been gone for a good year or two. The dermatologist doesn't want to see me again!

2. The new gynae/endocrine unit at Guy's is GREAT. They have definitively said now that I am in early menopause, and given me an HRT patch (Evorel Sequi) which is supposedly the best for libido. It's one type of patch for two weeks, then a different type for the other two weeks. The first patch is WONDERFUL and fixes all of my issues and is fabulous. The second patch - meh. But half the month is better than none at all, and I'll see if I can get them to tweak it at all when I'm back there in February.

3. HOP appointment on Monday, and my counts are still great. I only got an oral count but it was something like Hb 13 platelets in the 200s and neutrophils in the 2s. I've had my MMR and chicken pox live vaccines, and HOP want to stop my Acicolvir now, too. So I'm finishing up what I've got (a month-6wk supply) and then I just really need to be on the lookout for shingles reactivation. But they don't want to see me until the end of January, and they say my liver counts are much better now, too.

So - no hospital visits until after Christmas! Though I will need to stop in at the GP at some point and get a flu vaccine...

(And I still walk 6km to/from work every day in addition to the 20-25km I run every week and the heavy lifting and DIY work every weekend while we're renovating our barge)

Oh and we're off to Hungary next week for our anniversary. :D

Debbie W

Thu Sep 15, 2011, 12:01 PM

Melissa,

Happy to hear things are moving along and have a great trip for your anniversary!

Debbie

squirrellypoo

Thu Dec 8, 2011, 12:14 PM

I will not be carrying the Olympic torch afterall. Big disappointment after getting nominated and through the first round. :(

Guess I'm just going to have to do extra well in my first half marathon in Paris in March. I signed up last week and I'm very excited for it, especially since I just found out a friend's running it, too. I'm just hoping to finish under 2hrs, but if I beat my friend it'll be even sweeter!

mausmish

Thu Dec 8, 2011, 12:29 PM

Sorry, Melissa :(

Good luck in Paris. You are amazing, an inspiration for all!

squirrellypoo

Fri May 11, 2012, 06:42 AM

I just realised I haven't updated my thread in a while and it was about to drop off the first page in the Transplants sub-forum. So let's see, updates...

Paris half-marathon - I absolutely exceeded my wildest expectations in Paris and I finished in a very respectable 1:47:12! I was most proud that my pacing was rock-solid the whole way through, and I beat my previous 10K PB in the first half of the race! I then spent the rest of the weekend self-medicating with macarons. :) More info and photos in this thread (http://forums.marrowforums.org/showthread.php?t=2707)

Hormones - the HRT patches started off great, but after a month or two, had zero effect anymore, and I found the patches to be irritating and uncomfortable. So the gynae/endocrine doc switched me to Livial/Tibolone (http://en.wikipedia.org/wiki/Livial) pills, which act in a different way to just giving you hormones outright so she thought it was worth trying. The first two months were rough, I felt really aggressive and stressed (testosterone, yay), but I'm on the third month now and it's settling down, and I'm finally having something approaching a libido, so I'll see if it carries on. And enjoy it while it lasts! At least the "take one pill every morning" routine is easier for me than the patches.

Illness - I picked something up on the flight from Montreal at the end of March/beginning of April, and while I was laid low with a fever, a secondary infection jumped on board and gave me a full body, horrible pox/rash thing that made children cry to look at me (it was either HSV, shingles, chicken pox, or something, but the treatment was the same for all of them - super high Acicolvir dose - so they weren't that concerned in narrowing it down). At the same point, our beloved, wonderful, bundle of joy, our kitty Bosco died suddenly in his sleep from a heart attack, so it was an awful week all told. The spots faded well before the pain of loss has, let me tell you.

In general I'm still way more germ-phobic than the average population - I don't touch anything on public transport, and use a germ-killing spray after touching anything (any buttons, I always hit with my knuckles rather than finger tips, too). In general, I don't get sick very often (less than the guys in my office), but when I do, I go down hard and extremely fast. I'm fairly certain it was touching the hard surfaces on the airplane that did it to me, rather than the recirculated air.

Upcoming - I'm running two 10K races, one at the end of May and another 1 July to celebrate my 3rd rebirthday, and I've made a big step in signing up to run the full marathon in Amsterdam in October, omg. It'll be my first, and I'm terrified, but I've got to see if I can do it, and I've got an excellent level of fitness already. To be perfectly honest, I'm in the best shape of my entire life (I can run way faster and further than I could before I was ill!) so if I don't try now, when will I? And, as with every race I run, I take the memories of Vera, Rob, and David along with me, and I spare a thought to Serkan and Laura and all my other transplant friends, too.

Chirley

Fri May 11, 2012, 07:14 PM

Hi Melissa,

I'm sorry to hear about Bosco. You posted some photos here before and I remember thinking what a beautiful cat you had.

I still feel the loss of my little old dog who died suddenly in February. As time goes by I can laugh and smile as my memories of her come back at unexpected times but I still feel the empty space everyday.

I understand your sadness and I'm sending my thoughts your way.

Laura

Sun May 13, 2012, 04:18 PM

Melissa,
So happy to hear that things are going to so well for you or you are able to recover well from the aliments (sickness, etc). I am so sorry to hear about your cat. Being a cat lover, I feel your pain and I am very sorry for your loss.
I can't fathom how you have the energy to run like that. I can barely make it up the stairs in my house!

Laura

squirrellypoo

Mon Jul 9, 2012, 08:27 AM

Just a short update to say that yesterday was my 3rd year rebirthday! I ran another 10km race last Sunday for a lovely little charity, ACLT (Afro-Caribbean Lukaemia Trust) who help promote blood and bone marrow donation, and I just couldn't say no! I ended up *finally* getting the sub-50 time I've been chasing for years, finishing in 47:53 and as the first woman charity runner. The people there were really wonderful and supportive and I then spoke about bone marrow donation to my 150-strong person running group last week and got (hopefully) loads of new donators on the registry. My running group is very racially mixed, with a great mix of ages, too, so hopefulyy everyone can spread the word.

I'm starting week 4 of my marathon training now, it's feeling (shh!) quite easy at the moment but I know it'll get much tougher soon.

Oh! And I forgot to mention that there's another transplantee in my running group now, too! He's only 9 months post transplant, but he's already running in the same group as me, and doing SO well! I was so excited when I found out, I almost hugged the life out of him. :)

donna j.

Mon Jul 9, 2012, 12:47 PM

Congratulations you are such an inspiration to us all. Keep up the good work and great running!

Donna

Laura

Wed Jul 11, 2012, 07:35 PM

Hey Melissa!!! Happy rebirthday!!! So glad to hear things are great with you!! Laura

squirrellypoo

Tue Sep 11, 2012, 07:11 AM

I haven't posted in ages but just by way of an update, my training for my first marathon in Amsterdam in October is going well - I ran my first 20 miler last weekend and this weekend I had a fun half marathon race. It was costumed, very hot and very hilly, through a lot of trails, and I ended up as the 5th female finisher in a field of about 500 runners. :) I passed a lot of elite guys on the uphill stretches, and dressed as a sailor girl (http://www.fehrtrade.com/gallery/634/sew-like-a-sailor-run-like-a-sailor), too!

It's our wedding anniversary next week and we're off to France for a low-key holiday. Healthwise everything's great - I've finally found an HRT that seems to work for me and the gynae-endocrine doc has upped the doseage on my request, so that seems like the last little bit of the puzzle.

mausmish

Wed Sep 12, 2012, 11:23 AM

Melissa, always wonderful to hear how well you're doing, and I love the sailor suit! Karen

Laura

Fri Sep 14, 2012, 09:36 AM

I totally echo Karen!

Glad to hear you are doing great Melissa!

Have a nice anniversary!

donna j.

Fri Sep 14, 2012, 04:46 PM

Melissa,

Congrats and Happy Anniversary,Ohh La La!

Donna

squirrellypoo

Fri Oct 26, 2012, 11:05 AM

Just a note to say I posted in the News & Events forum here about running my first marathon on Sunday! (http://forums.marrowforums.org/showthread.php?p=25776). :)

Lori Patrick

Sat Oct 27, 2012, 10:32 AM

You are doing SO WELL! I'm happy for you.

squirrellypoo

Tue Jan 29, 2013, 10:45 AM

Just an update to the thread for anyone reading it later - I've been pretty much continuously ill since October, picking up every single bug that's going around. At first I thought maybe it was due to my reverse taper post-marathon being too short (which can really affect your immune system), but then I had flu for 3 out of the 4 weeks in December (despite getting the flu shot), and here I am in January ~10 days into a recovery from shingles. Absolutely every person I've shown my torso to has gasped in horror and said it's the worst case they've EVER seen, lucky me! I'm a tough bird, but this was extremely painful and has really knocked me back.

Anyway, I think now it may have to do with the stress I've been under at work, which ramped up significantly around the end of September, so I'm doing everything in my power to ease that, and just hope for the best that when I reach the magic 5 year mark that my immune system might mature into that of a school-age child, which all my friends with children says makes a massive difference. Things weren't so bad when I was on Aciclovir for the first 2 years post-transplant, but man did I notice an upswing in colds and flus as soon as I came off that and I was essentially "on my own"!

I've got four half marathons and a full (Copenhagen in May) booked, plus two city breaks and a week in the States to look forward to, so that's a lot of time in planes spent NOT touching any surfaces!! I just hope my body can stay illness-free long enough to train for them - my mind is definitely stubborn enough, so no worries there!

Lbrown

Tue Jan 29, 2013, 12:33 PM

Well, as painful as it is, it shows your immune system is working. I had shingles myself and it was NOT fun. Colds / flu symptoms are caused by your immune system waging war on the pathogen(s). Annoying but supposedly a good thing.

Good luck!

Deb

Neil Cuadra

Tue Jan 29, 2013, 12:41 PM

I'm sorry to hear about this setback, Melissa. This has been one of the worst flu seasons in years. So many people we know are home sick. But getting shingles is even worse. I wish you a speedy recovery.

squirrellypoo

Wed Feb 27, 2013, 11:35 AM

Just an update 5 weeks on that my shingles (the worst anyone's ever seen) caused nerve damage so I've been on lots of painkillers, and I'm still waiting for the neural-specific ones (Gabapentin & Amitriptaline) to take effect so I can stop with the others (paracetemol/tylenol, naproxen, and tramadol, plus topical lidocaine). I've got a really good GP right now and she recognised that I was feeling worse doing absolutely nothing so she said I'm okay to do the odd afternoon at work and go for some gentle/short runs (yippee!) so I'm feeling better now mentally just for those.

I saw a Pain Clinic nurse who said what I'm describing isn't technically PHN since I wouldn't even be able to touch the skin on that, so it sounds like mine's nerve pain but without going full-blown PHN. So fingers crossed the neural painkillers can deal with it and stop it getting worse.

(I've had to pull out of this weekend's half marathon in Paris and I'm getting nervous with only 11 weeks to go before the Copenhagen marathon, but my trainer's not concerned yet so I'm just going to try to relax...)

Lori Patrick

Wed Feb 27, 2013, 08:40 PM

I am sorry to hear of your setback. It's hard to imagine how bad things can be until you get them. The shingles sound horrible. I recently had liver problems and I had horrific itching. So bad that I was going to ask to be put in a coma. Itching does not "sound" that bad, but it was! Hopefully you will be strong soon and ready to run! Blessings. Lori

LoveRapheal1

Tue Mar 5, 2013, 08:30 PM

I am so happy that you survived this with such a positive outlook. I too will schedule my bone marrow transplant. I am 38 years old. I plan on scheduling it April 9th 2013 if my counts do not improve. I am going to buy a wig too, but not to match all my outfits like yours. I would rather call it a Diva wig because I love singing and I think that I am going to sing throughout this entire procedure. Thank you for inspiring me with your courage, determination and strength.

I posted my story a few months ago (http://forums.marrowforums.org/showthread.php?t=864) but haven't had a chance to update much since then, what with juggling hospital visits, work, and my social life...

But my bone marrow transplant admission date is rapidly approaching, and this seems an appropriate place to keep a running saga as it goes along. I had my pre-transplant clinic appointment yesterday, so I know a lot more specifics than I did previously, too.

2 June - admission to Derek Mitchell Unit (dedicated BMT ward) at King's College Hospital, London, UK, under the watchful eye of Prof Marsh and Prof Mufti
3 June - chemo for "mini transplant" starts. I'm getting Fludarabine (http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Fludarabine), Busulfan (http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Busulfan), and a very new one, Campath (http://www.campath.com/), that attaches antigens onto the surface of the donor's T-cells or something like that. Apparently it's fresh out of trials...
11 June - stem cells from an unrelated matched donor

It's nice knowing I'm in the best place in the UK for BMTs, but at the same time, the statistics are a bit frightening because they're all for BMTs as a whole, and I feel like I should be above the odds since a) I've not got cancer nor have I already been weakened by years of chemo and b) I'm young and (at least before I got sick) very fit and healthy. But since there's very few cases of Aplastic Anaemia that get BMTs, it's almost as though the Profs are developing my course of therapy as they go along and what the research would suggest is best, too.

The only thing left for me to do is get my Hickman line inserted on Thursday (May 28). Oh, and pack up lots of activities to last me 6 weeks!

Anyone have any experience, either at King's or with the same chemo drugs, or have any advice on what to pack? I'm not quite sure how I'll feel, and there's no amount of reading that can predict it either!

squirrellypoo

Wed Mar 6, 2013, 11:38 AM

Laura

Mon Apr 1, 2013, 06:46 AM

Oh Melissa I am so sorry to hear about the shingles, etc. How are you doing now? How is the pain? I liked Lyrica much better than Neurontin for nerve pain. If Neurontin isn't helping much maybe try switching? I am always thinking of my "transplant buddies"...you...etc from this site.

squirrellypoo

Mon Apr 1, 2013, 02:17 PM

Hi Laura! I often think of you and my other transplant buddies, too!

I'm doing much better with the shingles pain. I weaned myself off the tramadol in Paris at the beginning of March, then off the paracetemol & naproxen shortly after. About a week ago my GP gave me the go-ahead to try stopping the Amitriptalyne, and even though I did a super short taper down (4 days instead of 3 weeks), I had zero withdrawal and the low level pains didn't increase. She said in a few weeks I could try a looooong taper off the Gabapentin then, too, leaving me with just the lidocaine patches, which I really like, and are no bother at all.

I'm SUPER happy to be off the Amitriptalyne, though, because it was preventing me from drinking (not usually a big deal but it was just my birthday and we're going to the States for a week now) and preventing me from training hard (because of a slight risk of increased heart strain when combined with my daily antibiotic, Azithromycin). So I'd spent most of March running slow and long and getting my mileage and routines back up again, and now I can add my tempo and hills sessions back in the mix so I'm much happier.

Having lost 8-10 weeks of training, I'm no longer aiming for a Boston marathon qualifying time in Copenhagen (it sound hardcore but it'd only mean shaving 8min from my Amsterdam time now I'm an old lady ;) ), but I'm just going to get out there and enjoy myself and enjoy the race and the city. I got my London 2014 qualifying time in Amsterdam and that was what I really wanted so anything else is just extra. A few friends from my running group are also going, and I've met one of the Danish runners, too, now so I'm really feeling positive about this marathon and at least being able to put in a good showing. :)

Thanks for checking in, and I hope things improve for you soon, too.

melissa

squirrellypoo

Wed May 29, 2013, 12:13 PM

Just an update to say I ran my second marathon last weekend in Copenhagen!

I lost 8-10 weeks of training due to an awful case of shingles (which I'm still on two pain meds for now), then I started to transition to midfoot strike about a month ago so my feet were still tender/damaged in a few places from that. Plus, I picked up a cold the week before the race so I was still really snotty & tired even as far as Friday, but ended up feeling about 85% on race morning.

The short version of the rest of the race is that my hips and quads just weren't able to take the 3:45 target pace (5:18min per km). The former I blame on the frequency of cobbled stretches, the latter I blame on my recent midfoot striking building up my calves and hamstrings, but heelstriking during the race itself meant my quads were taking the brunt. When I realised that 3:45 wasn't going to happen, I just settled in, tried to smile at as many spectators as possible, and breathe deep and calm. The 20s felt harder than the 30s to me, but I think that's because I was still trying to maintain that pace then, and in the 30-kms I allowed myself to take a few walking breaks, though only of (honestly!) 10-20 second each. Just enough time to say "see hips? It hurts just as much when we're walking as when we're running. So let's run again!". Silly hips. They do lie, Shakira.

Unlike Amsterdam, I stayed perfectly lucid throughout - no fuzzy headed haze at 30km, and it really was just my mind against the gnawing pain of my hips, quads, and my poor battered, blistered feet. But like Amsterdam, I got to 40km, and thought "2km left? That's NOTHING! Let's go!" I picked up the pace considerably in the final stretch and managed (what felt like anyway) a sprint finish for a time of 3:52:37. Not the GFA I wanted, nor a PB, but considering I've only really had 6 weeks of training, I'm okay with that.

http://www.fehrtrade.com/images/5037.jpg

And there's an official race photo of me mid-run here, too! (https://picasaweb.google.com/112425788842227144757/Races?noredirect=1#5883411308389299730)

My parents got up at 3am to follow my race - my mom's iPad with the official app tracking my 5km splits, the Dailymile site watching my iPhone app update every 5min and my dad leaving me messages that got spoken into my ear, and the official site with the live video stream. It totally makes a long, foreign race feel friendlier to have messages from family and friends all over the world throughout the race!

Neil Cuadra

Wed May 29, 2013, 06:25 PM

Melissa,

A personal best wasn't in the cards, but given the circumstances I think that willing yourself through the entire race was achievement enough!

Not being a runner I'm puzzled about your transition to a midfoot strike. I know it's about changing how your foot impacts the ground, but what's the reason for switching?

mausmish

Wed May 29, 2013, 11:09 PM

Melissa, I think you're awesome! Congratulations. You consider to excel despite all difficulties, an inspiration for us all. Karen

squirrellypoo

Thu May 30, 2013, 09:24 AM

Not being a runner I'm puzzled about your transition to a midfoot strike. I know it's about changing how your foot impacts the ground, but what's the reason for switching?
It's a good question! The short answer is efficiency.

For the previous ten years of my running, I put my foot out, and it strikes the ground in front of me, with my heel hitting first, I pull back, and my other legs comes out in front of me, hitting with the heel. This means that I'm exerting with each step to "pull the ground back", and heel striking causes extra strain to the hips and knees, with the quads doing most of the work.

In contrast, I've been working with a trainer/physio to help me run smarter and more efficiency. First she started with having me increase my cadence (number of times my feet hit the ground), to decrease the impact as they can't be raised as high. Then she got me throwing my centre of gravity forward, which gives you that feeling like you're starting to fall, which naturally moves your feet underneath you instead of in front of you, and makes it nearly impossible to also strike with your heel. At the same time she got me running on the balls of my feet, like I was "trying to sneak up on someone", light and easy. And the most recent piece to add in is to now kick my heels up in the back and raise my knees, so I get a circular motion to my stride.

This improved form means my calves are the springs that absorb the impact instead of my knees and hips, but the balls of my feet really need toughening up first! I can hold on to my good form for 10km at the most now, but by the time my next marathon rolls around (London, next April), I should be in a much better position!

Oh I forgot to mention earlier, but I'll also be competing in the British Transplant Games in August! Unfortunately the longest running event they do is the 3km "mini marathon" so I'll really have to focus on speedwork and the track if I want to win that gold medal for Kings. :)

PS: thanks Karen! Hope you're doing okay and your mouth isn't too bad these days.

Laura

Wed Jun 5, 2013, 01:58 AM

Thanks for the update Melissa and great pictures!!! You look so beautiful and healthy. I am so happy at all you are able to accomplish and do post bmt. You are such an inspiration!

squirrellypoo

Mon Jul 8, 2013, 06:13 AM

Happy rebirthday to me!! Four years ago today I received the stem cells from my anonymous donor. :)

We're going to celebrate tonight with dinner and a cocktail. Funny, four years ago it was in the midst of a heatwave, too. Everyone wanted to come visit me for the air conditioning. ;)

tserdogan

Tue Jul 9, 2013, 05:14 AM

Congratulations again.
Mini Transplant Team

squirrellypoo

Wed Jul 10, 2013, 08:10 AM

Congratulations again.
Mini Transplant Team
Thanks Serkan! How are you going? Your daughter must be so big now! :)

4bcsboys

Wed Jul 10, 2013, 09:30 AM

Congratulations on your birthday! I hope you a wonderful evening out. Thanks for posting as it encourages us newbies! :)

Heather8773

Thu Jul 11, 2013, 12:24 AM

Happy rebirthday! Hope y'all had an amazing time!

Cheryl C

Thu Jul 11, 2013, 08:15 AM

Great news that you're doing so well!

tserdogan

Fri Jul 12, 2013, 07:43 AM

Thanks Serkan! How are you going? Your daughter must be so big now! :)

yes it is true.she ıs 14 months old :)she starts to talk easy words :)
baba :father
kedi :cat
bebe :baby

i had avn problem at femur head of hip because of high dose steroid.
Recovery Surgery is must in future.

Other things are checked every month.İ still use cortisone small dosages.

Cheryl C

Mon Jul 15, 2013, 01:41 AM

All the very best! I hope you continue as successfully as you have started. Looking forward to reading further progress reports.

squirrellypoo

Tue Jul 8, 2014, 11:53 AM

Looking up on my last few posts, it appears I only ever post on my rebirthday these days. Oops!

But today is FIVE YEARS to the day from when I received my stem cells from my unrelated donor in America! I cannot say enough to thank him for giving me the life I have today - without him it's extremely unlikely I'd have seen 2010, let alone 2014. With his blood I've ran three marathons, including a Boston Qualifying time at London this spring, too (3:30:39!). I've started my own business in the past year, too, and my husband and I have so much to celebrate each and every day.

We'll be toasting my donor at dinner tomorrow night!

squirrellypoo

Wed Oct 8, 2014, 05:05 AM

Just thought I'd give a little update since I ran another marathon last weekend in Berlin and it was such a happy, joyful, wonderful experience for me. I ran it with a guy from my running crew I didn't know well at the start, but we were like brother & sister by the end! We wanted to smile and cheer the whole way through, and remember how lucky we are to be able to run. We finished in the exact same time, 3:46:05 - nowhere near a Personal Best for me, but I ran it really evenly paced which is what I wanted.

I also had some big news a few weeks ago - after a bunch of consent forms were passed around the world, I got details of my donor!! So I know his name and where he lives, and I dropped him an email but haven't heard back yet. I was pretty emotional just to see his name, really. Amazing.

Annnnd, after my performance at the British Transplant Games this year (4 gold and a silver in track & field), I've been selected to represent Great Britain at the World Transplant Games in Argentina next year! OMG! Now, I think I've finally accepted that I'll never compete at the Olympics (ha!), so this is truly a wonderful thing!

Cheryl C

Wed Oct 8, 2014, 05:20 AM

You are amazing! Great to read your continuing story.

Whizbang

Wed Oct 8, 2014, 08:33 AM

Congratulations on your run!!!

So inspiring to see such great things after enduring so much...

All the Best, and May God Bless! (us all)

Neil Cuadra

Wed Oct 8, 2014, 12:34 PM

Congratulations, Melissa. You're an Olympian to us!

May I ask why it took 5 years to learn about your donor? Was this a restriction imposed on you or just a matter of when you and your donor decided you were ready to exchange information?

I've read that NHS Blood & Transplant encourages donors and recipients to wait 2 years before exchanging identification, and that the Anthony Nolan bone marrow registry requires it. In the United States it's one year, and other countries have other policies, some even disallowing contact entirely.

My wife's donor was shy about taking credit for being a hero, but we were eager to talk to her at exactly the one-year mark, and we were so pleased that she agreed to meet us.

Do you think you and your donor will get to meet?

KMac

Wed Oct 8, 2014, 12:45 PM

Congratulations, Melissa! You are an inspiration to all of us.

I have been slowly getting back into running since my ATG treatment 2.5 years ago, but nothing like what you do.

Optimistic

Wed Oct 8, 2014, 09:25 PM

Wow a true inspiration to us all thanks for keeping with updates this really helps ease my anxieties God bless you!

squirrellypoo

Thu Oct 9, 2014, 07:23 AM

May I ask why it took 5 years to learn about your donor? Was this a restriction imposed on you or just a matter of when you and your donor decided you were ready to exchange information?
It just boils down to a lack of information, really. I wrote him a letter at 1 year, but when I didn't hear back at all, I figured he just didn't want the attention and maybe thought nothing of the donation, so I didn't write again.

But then earlier this year, I learned through Twitter that many donors aren't allowed to respond to recipient letters! So that changed my mind and I thought I'd write to him again at my 5th rebirthday, and in getting the proper address from Anthony Nolan, I learned I could request for consent forms to exchange personal information. This was the first I'd heard of it, so I did, and he received the request along with my 5th year letter. It was then another month or so before I got a phone call from Anthony Nolan saying they were sending his contact info through.

Thank you to all of your congratulations! I hope that my posting here will inspire other BMT patients to believe that they can get through this some day and be even fitter than they were before their illness. I only ever ran one 10km race before I got ill, and never dreamed that one day I'd ever regain my fitness, let alone run faster or run half marathons or full marathons like I do now!

Oh, and I got a mention in another runner's Berlin Marathon race report! I saw him in our starting pen and went over to say Hi and that Anthony Nolan found me my bone marrow donor. :) http://www.blueeyedsun.co.uk/blog/anthony-nolan-berlin-marathon-greeting-card/