Yesterday was an interesting day…… The nurses thought I *might* get a cancellation for the insertion of my hickman line so I had to stay in the hospital for the day to ensure I would be near by. Turns out I wasn’t actually booked in till today…… so that was a waste!!
To make up for it I have been rebelling and escaping last night and this afternoon. Both times I have been called by the hospital to get back; once because I was gone too long (according to hospital policy apparently) and the second because a porter had come to pick me up for a chest x-ray! Ooopss!!!
Today was my first dose of chemo (fludarabine). After some too-ing and fro-ing the doctors finally decided to give me the full dose of the chemo. (Until yesterday they had halved my dose as my kidney funtion didn’t look too great, apparently it is fine now despite the half bottle of wine last night!)
For anyone that is interested here is my chemo regime for the next week:
Likelihood is it will take a few days to get side effects from the Fludarabine, but once the Campath hits I will feel like poo!!
Chemo has started and that is it, no going back now…. goodbye old bone marrow!! Gaaahhh…. I feel like now I am just sitting and waiting for any side effects…..
On a lighter note…… here is Reagan and Russell rocking my wigs!!
Yesterday evening I got a phone call to say that I had a bed on Waddington ward. Now yesterday was the 29th, I was anticipating not going into hospital until the 30th at the earliest there was no way I was expecting to have a bed earlier. Consequently I was a little shocked and under prepared. In typical Emma style I hadn’t packed ANYTHING, leaving it all to the last minute! My only saving grace was that I had actually done all my washing in preparation for packing.
So my mum and stepdad rushed back to Peterborough to help me pack and we set off to London at 7pm. We grabbed a sandwich on route and made our way to Kings. On arrival at 9:30pm we were told the room wasn’t yet clean!! 2 hours I waited for my room to be cleaned….. most frustrating thing is we might as well have had a proper meal on route and also my mum and stepdad didn’t then get home till the small hours!
Mentally I’m not sure I was ready either. Although are you ever really ready to have your body pumped full of chemo? The one advantage is that it saved me having a day sat next to the phone waiting for a bed as it was unexpected, so it probably saved me a lot of stress. Also now I’m here it means I can set my room up properly whilst I have energy and aren’t attached to a pump.
As I’m in a day early then today is all about preparations. They are trying to get my hickman line in a bit earlier but I’m allowed to roam around once that has been done. Plan is to keep myself busy, visit some friends and avoid thinking about what tomorrow holds!!
You might have noticed I’ve gone a bit quiet since my last post as I’ve been keeping myself pretty busy! I had 2 units of blood last Saturday and its given me a new lease of life. I think I’ve barely stopped since spending time shopping, cooking, eating, walking, gyming, drinking, knitting, being spoilt with presents, laughing and generally enjoying xmas time at home with friends and family. 🙂
At the moment I’m just kind of ignoring the fact I’m going into hospital on Wednesday, but I think tomorrow I ought to pull my head out of the sand and start washing and packing my gear…… 3 more nights at home….. Gaaaaaaaahhhhhhhhh!!!
Today was the trip to London to sign my life away, but it didn’t go quite as I thought it might at the hospital!!
Started the day with a chilled walk with the dogs and my brother round the fields in my mums village, watching his little pup Jasper bound through all the fields! Then got the train down to London with my dad to meet Liz for a spot of late lunch at the Love Walk cafe. Great to see Liz (despite the hangover) and catch up on some of the gossip from the work party!!
Pouting on a London bus in my new wig, thanks to Sarah Bishop!!
Then 3:45…. it was the meeting with one of the consultants (Potter) and Debbie the transplant co-ordinator. Before going onto the consent forms we started with the bone marrow biopsy results. So my biopsy results were pretty much everything a transplant patient wants to hear:
100% donor
low % blasts
no monosomy 7 defect detected
However my bone marrow cellularity is ridiculously low, so I am hypo-cellular. I have 5% stem cells in my bone marrow, where as an adult my age should between roughly 50 -60%. So my bone marrow is pretty much empty. This is why despite my blood levels stabilising they are not massively increasing, there just isn’t anything to make them.
So technically I am in remission…… There is an option to wait and see what happens. Wait and see if my bone marrow regenerates by itself. Wait and see if my blood counts pick up. However, the chances are this won’t happen by itself. So I will be left with low blood levels, not low enough to need blood products but low enough to not be able to work or live a normal life. I will still be high risk of infection. AND the doctors are 99% certain (she actually said 100% but I don’t believe anyone can be 100% certain about things like this) that the cancer will come back at some stage we just don’t know when. It could be a month it could be a year, but it will come back and the chances are I won’t be as well as I am now.
So it seems I have two choices:
Wait and see…..let my body get weaker….wait till the cancer comes back and then struggle to fight it
Attack the f*cker now!!
The doctors opt for 2) and so do I. It feels like a no brainer for me to opt for the cure whilst I’m well enough to try. The fitter I go into transplant, the lower the risk of complications.
The 30th is my planned admission date (tomorrow I will update with the full consent process and chemo plan, too tired now!!) and until then I will be trying to spend time with friends and family, and hopefully stay infection free! This started with an quick glass of wine down the pub with a few work colleagues (should have got a photo damnit!!) Makes me realise how much I miss the office, but most of all the people I work with!! You guys are amazing 🙂
And finally my secret Santa present arrived!!! Thank you all in Loyalty Analytics, can’t believe I still made the cut despite being an ISS gal now!! ha ha!!
One of the nurses, Tami, used to be a graphics designer and decided to make some adult chemo stickers inspired by the childrens superhero chemo covers. I opted for champagne but she had done something to suit everyone’s taste; vodka, malibu, bourbon, lager! Bit of fun in the chemo unit, sums up the nurses at Peterborough pretty well!! It’s the little things like this that can totally change your hospital experience and put you at ease. These nurses are amazing and always seem to put the patients first even if it means they don’t get their lunch till after 3pm when working a 10 hour shift!! I can never say enough good things about them!!
Tomorrow I am going to London to sign my consent forms and find out what the plan is for transplant. My main aim is to ensure that they are going to give me enough chemo. The last thing I want now is for them to be skimping on the chemo. Yes it will make me feel like complete and utter shite….. Yes I am dreading it…. and Yes I would well and truly have to face my vomiting fear again….. BUT…. I am not risking this fecker coming back again, this is potentially my last time to fight this and I want to make sure we kill the c*nt!! (Sorry mum, but it is the best word to describe it)
I am still feeling pretty anxious at the moment. I’m hoping this will all settle a bit after finding out the plan tomorrow, but equally it might even make it all feel a bit more real!!! Potentially 13 days till D Day…… Aaaaaarrghhhh
Had a lovely evening today being Skyped into the loyalty analytics xmas party and getting my own secret santa present! I even got sent my own poem and gift (although the gift hasn’t arrived yet unfortunately). Was so much fun to see everyone and hear all the poems, although has made me a bit sad. Made me realise how much I miss all that crazy lot at AIMIA, although good to know you haven’t forgotten about me yet!!
It seems after many weeks post chemo my bone marrow is finally showing some signs of recovery!! This is totally unexpected, the doctors all thought that after one round of chemo my bone marrow would empty out and fail however this does not seem to be the case!! I’m a bit late in the recovery, normally it would take 3 weeks, I’ve taken nearly 5 I think but who cares!!
I have gone a week without platelets and they are actually climbing, not much but they were 20 on Friday and were 31 today! I haven’t seen a climb in my platelets without a transfusion in over 6 months! Also my HB has stayed constant and my neutrophils are hovering above 1!
At this stage this doesn’t mean much, I will still have to have the bone marrow transplant. However, it is a sign that the chemo course did eradicate some of the disease and has allowed some good cells to be produced. This could mean that I am edging towards remission and therefore ready for the transplant which is great news.
Amazingly I’m still currently at home and feeling well. Jaw is still a bit niggly but my gland has gone down. I’m getting out and about and enjoying the freedom of being at home. I’m cooking good foods, getting on with my knitting, doing a bit of girly time and even heading back to the gym. Being at home and going to the gym is making me realise how wasted my muscles are though, back in September I did 4 hours of spinning without too many complaints but now I can barely hold my own weight standing up on the bike!! Its crazy, I can literally grab the skin where my calves and quads used to be!!
knitting, gyming and eating!
I’m still spending a lot of time at the hospital (2:£0 – 6:30 today!!), which is getting longer due to the number of patients being crammed in before xmas….. ergghh…. the poor nurses!! My nurse today didn’t get her lunch until 5pm today!! How ridiculous is that!?!?
The only thing I’m struggling a bit with at the moment is sleep. Once I’m asleep I’m fine and I sleep for hours, but getting to sleep is proving a struggle. I find that once my head hits the pillow I start reliving my previous transplant journey, wondering what I can do to make it better this time or how I’m going to cope. Worries such as “If they give me stronger chemo will I spend the whole time vomiting?”. In the grand scheme of things I really shouldn’t be concerned about the vomiting, the fact they are going to pretty much kill me with chemo and then bring me back to life with someone else’s stem cells should be the scary part really, but I suppose that’s not how phobias work!! Anyway, I’m hitting up the sleeping tablets and going to try a stronger dose the next few nights to see if I can get myself back into a routine.
I have also been playing around with wigs, hats and redyeing the hair (decided I would risk the rest of it falling out!!)! What do you think?? I do have the issue that I have a tiny head and have to get the petite sizes which leaves me with limited choice but I bought the wig on the left in the end, Macie! Think she looks pretty good, and will look even better once the hairdresser has hacked her a bit!!
Anyone fancy helping me choose my NHS wig? I can get a free one from the NHS from this site: http://brownswigs.com/ladies-wigs/
Tonight will be my 6th night at home in my own bed….. think it is the longest I’ve stayed at home infection free since September!! Woop woop!
I spent the weekend mostly sleeping, eating and going for short walks. Monday it was back to hospital appointments. The hole in my mouth is healing well, my glands have gone down and I’m no longer knocking back the morphine! I’m on IV anti fungal treatment Monday/Wednesday/Friday which basically means i can write off half a day to the hospital!! Here is the vibrant stuff and me out walking (showing off one of my suburban turban hats!! Love it!):
Tuesday was a trip on the train to Kings to get stabbed for my bone marrow biopsy and get injected with some radioactive stuff to test my renal function!! Bone marrow biopsy was pretty nasty but I managed to get a registrar that I know quite well which always makes it easier. The renal test literally just involves an injection of radioactive stuff and then a blood test every hour after to see how quickly your kidneys filter it all out of your blood.
Hiding from the germy passengers on the train to London!
The highlight of the day though was getting to spend time with fellow patients Tannis and Sarah. Great to have time to chat with them and hear how they are getting along. 🙂
Now for the good news……
MY DONOR IS CONFIRMED!!!!
So I got a phone call from the transplant co-ordinator at Kings today and it seems everything is in place for my transplant in the new year! On the 17th December I will sign all the consent forms (confirming I agree to hideous chemotherapy and all the dangers of going through transplant). On the 29th December I will be admitted to start my pre transplant chemo regime. Around the 9th January I will receive the stem cells from my 31 year old German lady!! (These dates are all of course dependent on the biopsy results as this will determine if I need more chemo before the pre transplant regime)
One thing I want to say is how amazing the German’s are!! There are so many of them on the bone marrow register and so many patients I know have had German donors.
So it seems I’m all set for the new year and literally the new me!!
In other news……. not wanting to miss out any details I have learnt that morphine must have a plugging effect on me as I managed to spend pretty much the whole of Tuesday on the can!
I didn’t get the chance to beat any PB’s with the wee jug…… think the best I did was 650mls which is just pathetic really! However, it is for a good reason, I am now home!!
After 4 nights at kings with no temperatures they decided I was good to go home. Feels a bit strange though, I was expecting to be there at least a few weeks before I got let home and even then I thought I would be discharged to Peterborough hospital not actually allowed home!! Bit sad in some ways as I was looking forward to seeing more of my friends in London next week, but much better to be home for a bit!!
So what changed the plan??? Initially the idea was I got some granulocyte transfusion from friends, hence the call out on facebook, to boost my white blood cells and give me more of a chance of fighting off these infections. (Thank you again to all those friends that were booked in to donate). Whilst waiting for the donations my consultant decided it was worth having a go at stimulating my own bone marrow with a hormone injection called G-CSF to see what happened. Previously we didn’t want to use these injections as we didn’t want to risk stimulating the cancer, but at this stage it is no longer a concern.
Amazingly the GCSF injections worked and my neutrophil count has gone from 0.01 to 1.9!!! Hopefully these little bug fighters will clear me of my ailments and protect me a bit more going forward!!
As ever at kings the discharge process was frustrating…… After suggesting my dad picks me up in the morning and the pharmacist saying my take home drugs would be ready around 11am we didn’t actually receive the drugs and leave the hospital till after 3pm. Then lucky us got to hit several spots of friday night traffic making it a fun journey home….. ergghh!!!
Medical Plan
Booked in for blood tests monday in Peterborough to check platelet level, etc. Tuesday its a trip to London for another bone marrow biopsy (the Peterborough sample got lost on route…. *sigh*), a renal function test, and an outpatient appointment. It seems that my donor is a match and will be available in January but it all needs to be confirmed, hopefully will find out next week!
My Plan
Attempt to take things easy. I know that when I get tired I am more likely to get run down and get by an infection so I’m going to take my gran’s advice and pretend I’m 70 years old and do mostly sitting……. Well maybe not quite but I am going to try and force myself to slow down a bit!!
God a lot can happen in a few days! I really need to try and find the energy to update more often, but time seems to run away with me somehow! Strange how you are stuck in one room with essentially nothing to do, yet I still don’t do things like my blog. Its usually just down to tiredness, my head not being in the right place, or an interruption (like my dinner has just been brought in now…. who could resist the distraction of hospital food??!!!)
So whats happened….. over the weekend we managed to get the pain a bit more under control. I also received a pooled bag of granulocytes (white blood cells) on saturday to try and help me fight the infection. My neutrophils at the time were 0.00 so need any help I can get. Amazingly my face had over halved in size over the weekend alleviating a lot of the pain too! Everything starting to go in the right direction 🙂 (Only one slightly negative thing is I’ve developed a drug rash all over my body, but no idea what has caused it!!)
The granulocytesDrug rash
Then the ward got the phone call on Monday to say there was a bed available at Kings. Despite a lot of arguing with my CNS here at Kings I decided to stop being so stubborn and child like and come to Kings and get checked out. I think in some way i seem to associate Kings with me being a lot sicker, and feel like by going to Kings with no planned treatment I am giving into how sick I am. But really it is the best place for me to be.
Monday was hardwork trying to get the energy to get my things together to take to London, but with the help of Daddy Paine I got all my stuff sorted. I was 9pm though before my transport arrived to take me to London so I was exhausted by the time we eventually got there!! And of course you then have to go through all the usual admission stuff…. assessed by the nurse, forms, assessment by on call doctor, blood tests, MRSA swabs, etc… before eventually being allowed to sleep at stupid o’clock in the morning!!
I’ve been very lucky and allocated a MASSIVE room for kings standards. I’ve got a fridge and a decent dvd that I can connect my laptop to and there is wifi. So far the nurses have been pretty friendly too, just got to get used to not having my Peterborough nurses around me!
At the moment King’s plan is to assess me and fully get rid of this mouth infection with the IV antibiotics. I’m also going to have my pre transplant tests. So far I have had two tests:
Lung function test: Basically involves breathing in a tube…… the nurse tells you what to do at each stage, but we did three different tests. Basically a variety of breathing in and out to see how efficiently you breath in, expel air and absorb the gases. Nothing taxing although made me a little light headed at points from taking such deep breaths!! http://www.macmillan.org.uk/Cancerinformation/teensandyoungadults/Testsandscans/Lungfunctiontest.aspx
Heart Echo Scan: This is basically an ultrasound of your heart. Nothing uncomfortable unless you are particularly shy about getting your boobs out and don’t like cold jelly! I was able to see my heart beating, the valve opening and the valve opening and shutting as blood flowed through. http://www.macmillan.org.uk/Cancerinformation/teensandyoungadults/Testsandscans/Echocardiogram.aspx
The echo machine and an image of the left side of my heart… apparently
Yesterday I put a call out message on facebook asking for friends in London to donate granulocyte cells (white blood cells for me). I was overwhelmed by the number of you that responded to my message and offered to give up your time and blood cells!! It means so much to know that so many people are willing to try and help me in any way they can. Makes me feel a bit less alone whilst stuck in my isolation bubble. Thank you to everyone that responded or is coming into donate over the next week or so!! 🙂
Tomorrow is ward round and will find out a bit more of the plan going forward and I will update you all. In the mean time I will be continuing to wee in this jug:
Emma's fight against MDS 