To view more of my diary (dating back to April 2013) click on the 'older post' link
Thursday, February 6, 2014 (100 days)
I marked my 100th day today since I received the donor cells from a mystery lady in Germany.
There is still a long road ahead but the 100 day marker is a major hurdle to clear.
Hitting 100 days gives me a renewed sense of determination to make sure that everybody who needs life-saving donor cells receives them. I want them to have a second chance like I have had. This can only happen if we have a thriving and growing donor programme.
Therefore, as I grow stronger, I am determined to continue to raise awareness of the importance of signing the donor register.
Wednesday, February 5, 2014
I've been suffering a little today with post-transplant side-effects.
I've been very tired following a rather busy Tuesday and my tongue feels more sensitive than usual. Foods which most people would consider bland and mild are the equivalent to a hot Vindaloo for me at the moment.
It was nice today to receive messages of support through social media from my followers who had remembered it was my 100 day marker approaching without being reminded.
Tuesday, February 4, 2014
My 100 day marker is drawing nearer - Thursday is the day when I reach the milestone.
Nothing spectacular happens on this day, it is purely a benchmark used by doctors when assessing Graft versus Host Disease (GVhD) side effects - side effects before day 100 are classed as acute whereas side effects post day 100 are classed as chronic.
For me, I will still be battling the same nausea on day 100 as I am today on day 98.
Monday, February 3, 2014
My energy levels have been very good today but I'm back to battling nausea and trying to accurately time my meals and tablets.
We have to make the most of the days when I am feeling energised and so I've been trying to catch up on some of the correspondence i receive through email and social media.
My ever-increasing follower list on Twitter proves that people must be interested in my condition and charity efforts.
Follow me on Twitter @Leukaemia_and_K
Right on cue, my Sunday ended with the return of nausea.
For 90 per cent of the day, I have felt great which has enabled me to continue work on my fund-raiser which is now less than a month away.
This nausea will now be a common occurrence until we can find a way to manage the tablets which are clearly responsible for this feeling.
I made the most of my 'tablet holiday' and absence of nausea by taking a trip to the shops.
Again, this just involves me waiting in the car as my immune system is still very low, but at least it is a change of scenery.
Tomorrow I'm back on the chemo therapy sty,e tablets and so my nausea will probably return. The other downside to these tablets is that they lower your white blood count meaning that my immunity is also kept suppressed.
My 'drug holiday' continues as we try to establish what is behind my nausea.
I've felt really good today which must now prove without doubt that the majority of my nausea was caused between the chemotherapy drug mixing with the anti-rejection drug.
I've got to make the most of tomorrow as my 'drug holiday' comes to an end on Sunday.
Thursday, January 30, 2014
At my hospital appointment yesterday, we discussed my ongoing nausea. The theory that it is down to the tablets mixing together is being investigated. I am now on a four-day break from one of my tablets to see if the nausea improves. Day one, and the nausea has cleared proving it must be a tablet problem rather than anything else.
Wednesday, January 29, 2014
It was back to the hospital again today for a routine appointment.
We don't have the results from yesterday's bone marrow biopsy yet, but additional blood samples taken about three weeks ago look promising.
The highlight of today's clinic was bumping into one of the ladies we got to know through the Cure Leukaemia charity dinner last year. She had her transplant nearly five years ago and now just visits the clinic every six or 12 months. Meeting a 'success story' patient really gives your confidence a boost.
Tuesday, January 28, 2014
Next week, I will mark 100 days since my bone marrow transplant.
The only way to to see if my transplant is working as hoped, is to have a bone marrow aspiration and so that was on the cards for today.
Today's test would be my eighth bone marrow biopsy since April and so although I am now all too familiar with the procedure, nothing prepares you for the discomfort.
Thankfully, the procedure went smoothly and now we just cross our fingers for the results.
Monday, January 27, 2014
I spent the latter part of today battling nausea. I thought I had cracked the tablet and food timings to prevent such miserable occurrences but clearly not. Today's episode might have something to do with my anxiety leading up to my bone marrow biopsy in the morning.
Not only have I the worry of the biopsy, I have to be there for 9am which means an extremely early start, traffic jams and rush hour hell through Birmingham city centre.
Sunday, January 26, 2014
As the week draws to a close, I'm starting to get anxious about my appointments this coming week at the hospital.
On Tuesday I have my bone marrow aspiration. Apart from being one of the most uncomfortable and painful experiences you can imagine, the results from this test will give the first true impression of whether my transplant in October was a success.
If you remember, I had a bone marrow test done before the transplant. The results from my test on Tuesday will be compared to those results and what the doctors are looking for, are German donor cells rather than my own cells.
Saturday, January 25, 2014
Last Saturday I felt on top of the world but then this feeling quickly diminished throughout the week. Today, again, I have felt really well and so have spent many hours trying to plan my fund-raiser on March 2. I just hope that this feeling today doesn't diminish as fast as it did last week.
Click HERE for more details on my fund-raiserFriday, January 24, 2014
It has taken a few weeks, but I think I have found a way to beat the worst of the nausea.
Intricate timings between my various tablets and food appear to be the answer. Altering the times I eat or take the tablets is proving a success so far.
It's not perfect as taking some of the tablets causes nausea anyway, but things are improving.
Thursday, January 23, 2014
I've experimented with lots of different tablet timings but I still cannot find one whereby I don't feel nauseous after taking the chemotherapy drug Nilotinib.
I also thought my tongue was on the mend until I ate something slightly spicy - I had to dangle my tongue in a glass of water to ease the pain. I've learned my lesson - my tongue is still sensitive.
Wednesday, January 22, 2014
Whereas today I feel awful. I woke up with a headache and nausea, and even after the anti-sickness tablets and painkillers started to work, I still didn't feel 100 per cent.
Today has probably been my worst day for a while.
Tuesday, January 21, 2014
This sensation tended to come and go for an hour each day, making me assume that it must be tablet related. That was until today when the feeling has been almost constant throughout the day - maybe it's a sign of GvHD?
Monday, January 20, 2014
I'm still struggling to have a proper night's sleep and so I have resorted to digging out new pillows in the hope that these make a difference.
A new problem today has been my balance when standing. It's not a major worry, but it's a new issue which has started to develop today. I'm hoping it's just a 24-hour glitch.
The good news today is that I am sending a cheque to Leukaemia & Lymphoma Research totalling £63 for the sale of their 'Beat Blood Cancer' pin badges.
Sunday, January 19, 2014
It's hard to pinpoint exactly why or how I feel different today, it's just that I don't feel 100 per cent. Over the past few days I have had real difficulty sleeping. I've been unable to get comfortable and find myself alert and awake for much of the night - maybe it's this broken sleep which is making me restless in the day?
This weekend is a prime example of how my health changes day to day without rhyme or reason. Yesterday I could have conquered the world, while today I feel deflated.
Saturday, January 18, 2014
For a change, I felt rather energised today and so threw myself into organising my fund-raiser.
The riding aspect of the event means that it requires very detailed liaisons with police, councils and the Highways Authority. Thankfully, they are all supportive of the event and nobody is objecting to a snake of bikers making their way from Birmingham to Burton.
Friday, January 17, 2014
Everybody keeps telling me that the weather so far this month is very mild.
I ventured out today for around 5 minutes and almost froze to the spot - for me, this weather is perishing. It probably doesn't help that I have lost my blanket of hair, but I am pleased to report that it is growing back rapidly.
Yesterday at the hospital, we stocked up on anti-sickness medication and It's so far so good.
Last week, I ran out of my favourite anti-sickness remedy - a tablet called Ondansetron - and I struggled for a few days on two alternative pills which didn't work too well.
Now because I am fully stocked on Ondansetron while still taking one of the other anti-sickness remedies, I am managing to control my nausea better. The downside, is that I have noticed that since I have been back on Ondansetron, I am tired again.
It's a very difficult balancing act - I either have more energy and nausea or no energy and control the nausea.
Wednesday, January 15, 2014
It was back to the hospital today. Thankfully, my blood counts are pleasing my consultant and the many annoying problems I am currently experiencing (nausea, sore tongue, pains in my leg, tiredness and low energy) are all very common side-effects of having a transplant after extensive chemo and radiotherapy.
The clinic was exceptionally busy with more than 100 post-transplant patients having appointments. Listening to some other patient's stories, my side-effects are relatively mild - hopefully mine stay like this and don't escalate any further.
Tuesday, January 14, 2014
As my nausea continues, I now have another problem.
My tongue is starting to shed skin and crack which makes eating extremely painful.
Despite the discomfort, this is a side-effect I cherish.
A blistered tongue is a common symptom of Graft Versus Host Disease (GvHD) which happens when new donor cells begin fighting with your body.
Getting tell-tale signs of GvHD is a welcome early indication that the transplant has been a success as this can lead to a scenario known as Graft Versus Leukaemia whereby the new donor cells attack any remaining leukaemia cells in the body.
Monday, January 13, 2014
Nausea is still causing me problems. I'm convinced it's caused by the anti-GVhD medicine I am taking mixing with the chemotherapy style tablet I am also taking - not forgetting the preventative antibiotics and magnesium supplements.
Timing the tablets so that I leave adequate time between each dose is also tricky as some require an empty stomach while others need to be taken with food.
The mornings are currently my most stomach-wrenching time as the tablets have had a few hours to ferment in my stomach overnight. Getting up without needing to rush to the bathroom is proving more challenging each day.
The stamps we posted on Thursday have now arrived at Leukaemia CARE, and it was nice to receive a thank you message from the charity who are thrilled with the donation.
Sunday, January 12, 2014
I'm pleased to say that my chronic tiredness faze has lifted as quickly as it arrived.
Gone are the days when I could only keep awake for three or four hours a day.Unfortunately, this tiredness spell has been replaced with an almost continuous feeling of nausea.
Going to bed is now a problem as I know that I am likely to be kept awake with the worry and feeling of sickness. I'm on two types of anti-sickness tablet but neither appears to be working. I'm beginning to think that the tiredness spell was far more pleasant than this nausea.
Saturday, January 11, 2014
I have suffered with nausea all day today. I have been able to eat but have had a constant feeling of sickness. This makes taking tablets - which themselves cause nausea - a very difficult process. Today has probably been one of my worst days so far since the transplant.
And this continuous nausea comes on one of the busiest days so far for my fund-raising plans with raffle prizes arriving and a sudden spike in interest following extensive publicity on motorcycle websites.
http://motorcycleindustry.co.uk/bone-shaker-marrow-thon/http://www.adventurebikerider.com/news/999-the-bone-shaker-marrow-thon.html
http://overlandmag.com/features/bone-shaker-marrow-thon/
http://www.mslmagazine.co.uk/news/take-part-in-bone-shaker-marrow-thon
http://www.motorcyclemonthly.co.uk/news/join-the-bone-shaker-marrow-thon-charity-ride
Friday, January 10, 2014
Despite being exceptionally tired, I struggled today to get much rest. I couldn't sleep when I wanted to and felt very irritable. I managed to leave the house for a short drive-out to give me a change of scenery other than the hospital, but I'm still restricted to where I can go and who I can see because of my decreased immunity.
Thursday, January 9, 2014
I may be low on energy, but there are certain things which give me a sudden upsurge of enthusiasm and today it was used postage stamps.
The response to my appeal in the newspaper has been amazing and although the house was covered in thousands upon thousands of tiny pieces of paper, it was worthwhile to know that the 25kg haul was going to benefit the charity Leukaemia CARE.
I’d like to hope that even after the packaging and excess paper has been discounted from this total, that Leukaemia CARE has somewhere between 18 and 20kg of stamps to weigh in to sell. Which by my rough calculations and estimations should hopefully raise between £150 and £200 for the charity.
The charity’s work continues and without any form of Government funding whatsoever, my stamp appeal continues – keep collecting please.
For information on how you can collect for Leukaemia CARE, click the link below:
Wednesday, January 8, 2014
It was back to the hospital today. The main news is that my consultant is happy with my results and my tablet doses are being adjusted to suit.
I am gradually starting to take less of the drug which prevents the side-effect GVHD while I am taking a slightly higher dose of the chemo-style drug which I am taking to prevent the leukaemia returning.
I also have a date for my next bone marrow biopsy which is later this month.
Tuesday, January 7, 2014
It's back to the hospital again tomorrow for the weekly check-up and blood tests. The 9.10am appointment will make life busy in the morning - have you tried driving from one side of Birmingham to the other in rush-hour traffic recently?
Meanwhile, today, has been a day filled with insurance headaches for the BONE-shaker MARROW-thon, you wouldn't believe the amount of planning and expense needed to host an event of this scale.
Monday, January 6, 2014
I'm struggling to keep warm and it's apparently quite mild for January.
I don't know whether it's because I have a distinct lack of hair or just another of the many side-effects I am learning to overcome.
With an open fire roaring and the heating piping, I am still freezing while my husband is walking around roasting as if it is a heatwave.
Sunday, January 5, 2014
My energy levels are still very low, but in the hours I have been awake, I have been busy working on my fund-raiser planned for March 2 - the BONE-shaker MARROW-thon.
There is still a long way to go in terms of planning and preparation but support for the charity event has been overwhelming with support coming from many parts of the UK.
Unfortunately, my energy levels don't allow me to do as planning and preparation as I would like.
Saturday, January 4, 2014
My hair appears to be growing back at a rapid pace. It's hard to tell what colour or style it will end up, but at the moment, I am just happy that the regrowth has started. I've heard it can take many months before it reaches a reasonable length - you only have to look at Jessie J to see how long it's likely to take.
Friday, January 3, 2014
Judging by the freakish weather we have experienced over the past couple of days, I am beginning to think January may bring with it some problems.
Come sun, rain, snow or wind - my hospital appointments will continue.
Me not making one if these vital appointments because of the weather is not an option, the problem lies in that it isn't just a drive around the corner, it's a 70 mile round trip each time.
Thursday, January 2, 2014
As many people returned to work today for the first time since Christmas, my routine remained relatively unchanged. Vast quantities of sleep inter-mixed with dozens of tablets.
The main change now that many of the charity staff have returned to their offices was a return to the projects I started before Christmas - mainly Anthony Nolan's 'Roadmap for Recovery' and my own BONE-shaker MARROW-thon charity ride plans.
Roadmap for Recovery web lin
BONE-shaker MARROW-thon web link
Wednesday, January 1, 2014
The new year hasn't delivered me a new lease of energy as I am still extremely tired.
On the positive side, I am seeing the first signs of new hair growth appearing and so it won't be long before I have hair again. Being bald certainly makes you appreciate the insulation factor of hair as my head really feels the cold - I wear hats all the time, even inside.
Thankfully Santa delivered me quite a range of styles and designs to suit all weathers and occasions.
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