Sewing in hospital
30 June 2009, 15:11You may have noticed the new banner at the top of the site (or not, if you’re an RSS reader!) :
When
From 30 June for 4-6 weeks, I’ll be confined to a special germ-free room for a bone marrow transplant. For at least 6 months after that, I’ll be unable to go into any public or crowded places (shops, restaurants, cinemas, public transport, my office, etc) until my immune system rebuilds itself with the new stem cells.
What’s happening
Roughly speaking, it’s 7 days of intense chemo (yes, you can have chemo without cancer!!), then the next day I’ll receive the bone marrow stem cells from the donor via an IV drip, then the next few weeks are a waiting game filled with constant transfusions and battles against infections until the stem cells migrate to my bones and start producing new blood cells. After they reach a certain level, I’m allowed to go home, though I’m told to expect to be readmitted at least a few times after that.
Backstory
In 1984, when I was 5 years old, I had a really rare blood condition where your bone marrow stops making blood. To make a long story short, they tried a cutting edge therapy, which worked beautifully, they said I was cured, and it faded into the background of my existence as an aside – “oh yeah I nearly died when I was a kid”.
Fast forward 25 years to last October, when I was noticing my running was a bit more sluggish than usual (I was running 30k a week but put it down to changing the clocks) and I started having burst blood vessels in my eyes. The optician found nothing wrong and sent me to my GP for a blood pressure check. That was fine, but a blood count revealed that I had extremely low platelets (causing the eye haemorrhages) and low haemoglobin (causing the sluggishness) and within two months of that initial GP checkup I was being seen by the UK’s leading specialist and researcher in Aplastic anaemia. With hindsight, they know now that the brand-new treatment I had when I was a kid usually only lasts 5, 10, or 15 years, so they’re all very interested in me going 25 years without a problem as I’m the only known case anywhere in the world to have gone that long!
But alas, with further investigations (alongside the several transfusions a week it’s taking to keep me going), they discovered this time I’ve also got MDS (essentially: what little blood I do make is a bit weird), so that treatment that worked so well the first time around won’t make much of a difference now. So a bone marrow transplant it is, and I’ve been waiting on a suitable donor (luckily finding three 90% matches for me quite quickly) and space in the special ward for the past few months.
Wanna help?
I’m allowed to bring in pretty much anything I want to help pass the time, so of course I’ll have my little red sewing machine to keep me occupied, alongside my laptop and iPhone, the hospital-provided tv & dvd player, and a huge backlog of films and tv to watch (that’s a season of The Wire per week. I think I can do it!). I am allowed visitors, two at a time, in restricted hours, and only if they have no coughs, colds, or anything, and I’m not allowed any flowers or outside food (Londoners please email first if you’d like to visit).
Other than that, I will be reading all my emails (though I probably won’t be able to reply to as many as I’d like so please forgive me!), going through the various activity packs sent by family and friends and FehrTrade readers, and opening cards (my mom has kindly offered to open up all the envelopes to avoid any germs passed on my postal workers. Yes, it is that serious that you NOT send me anything if you’re even the slightest bit ill).
(hospital address removed after discharge. But I’ll be in outpatients twice a week so I can pick up anything already in transit whhile I’m there)
Another way to help out is to add yourself to your local bone marrow registry if you aren’t already. You only need to fill out a form and get a sample of blood taken at your GP or clinic and that’s it. And if you end up being a match for someone, then your immune system will be completely back to normal in three weeks (it’s not like donating a kidney or something where you’re missing something for the rest of your life, for instance). Please go here in the USA or here in the UK to get yourself on the list.
The good news is that I’m young, fit, and I’m being treated at the UK’s leading centre for bone marrow disorders (their dedicated bone marrow transplant unit is very impressive), so the outlook is as good as it can possibly be.
Tags: hospital
Best wishes! As I was reading your post I was wondering what I could do to help, so it’s great that you posted an address and the donor info. I have a friend who was in an isolation unit while she had radiotherapy (for thyroid cancer) and she got all sorts of things knitted while she was in there. It sounds like you are very well prepared.
— Laura VW Jun 30, 03:39 PM #
You are incredibly brave. Keep the strength up—what an ordeal. I will try to be entertaining in my posts just for you! Many, many thoughts and prayers. Cindy
— cindy Jun 30, 04:07 PM #
Hi Melissa, so glad for you that it is finally happening. Wish you good luck, all the best and keep strong! I’ll be thinking of you.
— Sigrid Jun 30, 04:28 PM #
I hope you will be feeling better soon. And yes, you can have chemo w/o cancer. My pastor has to take chemo every couple of months for a inherited audioimmune disorder.
— Rachel Jun 30, 04:38 PM #
Well, obviously you’re in the highest echelon of fighters so I have no doubt that you’ll end up just fine. In the meantime I hope you’re able to keep your head up and not feel too lousy or bored. Hopefully we can all keep your mind off the bad stuff. I’ll be thinking of you constantly!
— Lauren Jun 30, 05:36 PM #
Melissa, my thoughts and prayers will continue. You’re receiving the best care possible. With such great care and healing thoughts from so many people, I am sure that you will recover quickly.
— Daisy Jun 30, 05:38 PM #
You are fortunate to have such good care, and to think that so many people in the states are ranting against socialized medicine! Though of course those making the most noise have great health insurance! My thoughts are with you always. It looks like you have lots to keep you busy during your confinement. Good luck.
— Nancy k Jun 30, 06:45 PM #
I’m impressed by the fact that you are so organized! You have a wide variety of things to fill your time. Very best wishes on your speedy recovery. Thanks for mentioning and providing the donor information. Signed up years ago. Still no takers :-)
— Meredith P Jun 30, 07:33 PM #
I’ll be praying for you!!
— Sacha Jun 30, 07:36 PM #
I’ll be thinking good thoughts for you! I wish you the speediest and most thorough recovery!
Regards,
Rose in Silicon Valley
— Rose in SV Jun 30, 09:16 PM #
Good Luck & best wishes for a good recovery.
I hope you will be able to keep from getting bored. My hubby tells me his is saving certain TV shows for the “home.” (When he retires in 15 years)— Lisa Jun 30, 11:02 PM #
Hey Melissa, hope all goes well. So glad you now have a date. With your spirit and positive outlook you will be bouncing back soon I’m sure. Not to mention all the new outfits from the fabric shopping trips and little red sewing machine that will be keeping you occupied. Wishing you all the very best.
— Sandra Jun 30, 11:19 PM #
We’re wishing you the best from Alaska. Keep plugging away on your machine. It’ll keep your brain occupied.
— dawn Jun 30, 11:48 PM #
The best of good wishes to you and I’m sending up prayers for you also.
— gwen Jul 1, 01:39 AM #
Hope everything goes well, will be thinking of you. I hadn’t appreciated quite how much your life will change for the next 6 months as well, but it sounds like you will be able to handle it well. Best wishes.
— allisonC Jul 1, 02:59 AM #
Thinking of you – I will find out what is involved in registering in Australia as my little bit to help.
— Sue Jul 1, 12:14 PM #
Hi from Singapore. Best wishes to you, and will pray for you.
— Chor Yin Jul 1, 12:18 PM #
You must be relieved just to have it all going ahead at last. Hope you have lots to keep you occupied for now – I am sure that you have planned better than most.
Very best wishes
Kim
— Kim Hood Jul 1, 02:36 PM #
WOW!!!! You look terrific in all the fun clothes!!!! Did you make them all??? ‘Mother’ Fehr looked terrific—I loved her blue top!!! So glad the process has begun. You fought and won this battle before and you will do it again—only in a different process!!!! My thoughts and prayers are with—you’ve been on our prayer list at church from the start.
Love and prayers, Ruth Ann
— Ruth Ann Kretzing Jul 1, 07:19 PM #
Glad to hear it’s all finally underway, hope you’ve settled into your new “home”. Stay strong!
— Racheljm Jul 1, 09:41 PM #
Have fun. :-P We’ll be thinking of you. I hope everything goes perfectly.
— The Slapdash Sewist Jul 2, 01:40 AM #
Good luck, hope everything goes well. Awesome!! clothes by the way, you have lots of talent.
Your cuz, Jenny
— Jenny Jordan Jul 2, 03:42 PM #
Here’s wishing you a quick, successful treatment. Thanks for the “want to help info” It was new information for me.
I am looking forward to seeing all the new things you sew while getting your treatment.
— Audrey Jul 2, 04:58 PM #
May you have it smooth-going during this period. Stay strong and keep up with the positives!
— Jali Jul 2, 05:47 PM #
I wish you all the luck for this weeks at the hospital :) Positive feelings!
— DianaCirne Jul 4, 01:22 AM #
Wishing you well, Melissa
— Tany Jul 5, 04:49 PM #
Day 1!!! We are all thinking of you, and have been of course, I am terribly ill so am staying away from your mum and james, : (, but hopefully better soon, in the meantime, just want you to know we have some goodies for you. Just have to wait until my household is better. Hope the choco moo is going down a treat!
— Jamaica Bloch Jul 9, 09:16 AM #
Melissa,
I will be thinking about you and wishing you the very best. You are very brave. I am sending you virual hugs from Oklahoma. I will be watching for your posts on PR I assume you will still be posting.
Linda E
— Linda Elgin Jul 9, 01:31 PM #
Good thoughts and best wishes from Florida.
— Karla Jul 19, 02:36 PM #
I wish you all the best. You have a wonderful attitude about all this. I wish you a speedy recovery!
— Kerri Jul 21, 04:34 AM #
Hi Melissa,
Just found your site today doing research on the Manequim issue. I love your site and I hope you are recovering from your bone marrow transplant. Best wishes and get well!
Cathy
— Cathy Steiner Jul 26, 08:15 PM #
Good luck and I wish you a speedy recovery, Melissa! I hope you are doing well and keeping busy with your red sewing machine!!
— Rosanne Aug 11, 08:03 PM #