I had my meeting with Dr Mark Ethell, the stem cell consultant at the Royal Marsden Sutton branch on Monday.  He just wanted to have a catch up with me and see me in person.  On paper I may have sounded like a disaster case with my recent renal failures, chest infections and low neutrophil counts, but actually I do not look ill at all when you see me in person.  One of the specialist nurses there commented that there is no way I have had that much chemo, to her I looked liked I had not had any!  And, all the nursing staff could not get over the fact that I was wearing a wig.  They all thought it was my own hair.  One of the nurses had worked there since 1975, and said she had never seen as good wig like mine before!  And, I am sure she has seen a fair share of wigs during her career.

Mark was talking to me about the plan when the harvesting and the high dose chemo may happen, all of which is totally dependent on the PET scan this Tuesday.  So, I will not go into details as it may all change next week.  I will know more after the scan has been in discussed at the Multidisciplinary Meeting (MDT) on Thursday next week.  But, it looks like the earliest I would be admitted in for the high dose chemo would be around the end of June.  We will see.

I had my blood counts checked on Monday, and unsurprisingly I was neutropenic!  Mark suggested injecting a booster that day, as I was scheduled for the 4B PMitCEBO next day.  My neutrophils count was 0.5, which is the cut off point for me to have the chemo.  Any lower, they would not go ahead.

Sadly the next day at Chelsea, my neutrophil count had dropped to 0.3 and they could not go ahead with 4B PMitCEBO.  I got really frustrated, as this happens EVERYTIME after the A-part.  I asked to the doctor reviewing me that why do not we boost the neutrophils beforehand if we know I will be neutropenic for the B-part??  He was not my usual doctor and he thought it was best if Lucy, my key nurse came to explain this to me.  Lucy said they cannot artificially keep on boosting my neutrophils, and that it is normal for the counts to go low after the A-part, and that I should not worry about these gaps in the treatment.

I think, I am not so bothered about not having the chemo weekly as planned in the sense of how effective the treatment is, as I am sure a week gap will not make a significant difference.  I am simply frustrated this keeps dragging on, and I cannot see an end to it all.  I feel a bit trapped with all these appointments, treatments, and low neutrophil counts, as I cannot fly to Finland for instance, or go anywhere for more than a couple of days, or make many plans for that matter.  I have been hoping to go to Finland since January, and it is nearly June… And, if my chemo had been going as planned, I would be having the high dose chemo as I type.

Anyway, I did have Rituximab yesterday, at least.  The 4B PMitCEBO I will have next Monday (blood counts permitting).

It is exactly a year ago I woke up with my lymph nodes in my neck swollen, and when this journey started.

My pillow was covered in loose hair this morning, so I thought it was time to shave my hair off.  Jukka (my ex boyfriend) had lent his hair clippers, so I did I myself.  It was not as traumatic as it was the first time.   Of course, it was a shame I had to do it, and lose my hair, again.  But, I am mostly relieved it is done.  Now I can stop worrying about it.  To be honest, I feel pretty numb about the whole thing.  Frankly, I am getting bored with this cancer business, and losing hair was jus one of those, ‘oh here we go again’.

I took a picture of my short hair yesterday (please see below).

My blood counts were good on Friday, so I have not had to boost my white blood cells and neutrophils this weekend.  I am hoping they will check my blood counts at the Sutton tomorrow.  I am still a little sceptical if I will have the part 4B PMitCEBO on Tuesday as planned.  I hope so.  I do not want this to drag on any longer than necessary.

Me with my short hair 15th May 2010.

My hair has grown about 2 inches, 5cm, which has been great, as I do not need to wear a wig, hats etc at home!  But, now I think it is starting fall off…  They said, my hair would fall off during this chemo, but as it has not happened, yet, I thought maybe it would not.

Oh well, it would fall off during the high dose chemo anyway, so I suppose it is not the end of the world.

The 4A PMitCEBO went ahead on Monday.  The boosting had worked, and my body was full of white blood cells and neutrophils.  My mouth ulcers were not healed, yet, and still a little painful.  But, the consultant reviewing me thought it was safe to go ahead with the chemo.  I was not looking forward to it, but still happy there were no more delays.

The chemo was OK, although I had to wait to for my drugs most of the day, and the chemo did not start until about 15.30.  It was a long day.

I am going to have my blood counts checked again this Friday to see if I am neutropenic or not.

My next chemo is actually on Tuesday as I am off to the Sutton branch of Royal Marsden to discuss the stem cell transplant this Monday.

The consultant said that I may only need to 4 cycles of this PMitCEBO.  If so, the Tuesday 4B would be my last one.  I am not putting my money on it…

The mouth ulcers are getting better every day.  I have not needed pain killers since Sunday evening.  And, I can almost taste food again!

I have been really tired lately, and falling asleep everywhere, busses, tubes, waiting rooms, sitting by my computer…  And, I sleep like a log during the night!  I am so used to getting very little sleep thanks to the steroids, so all of this is very strange to me.

I went to the Royal Marsden to have my blood count checked yesterday, as I expressed my concern of being potentially neutropenic for Monday’s chemo.  I also wanted a doctor to have look at my mouth ulcers as they had been getting worse, and the pain was getting unbearable.

It was a jolly good job I went, as I was neutropenic, and the advice was to do the boosters for the next three days before chemo.  If I had not gone to the Marsden, my chemo would have most definitely been delayed, again due to low white cell and neutrophil counts!  They have also modified my medication for the mouth, and I got this new oral suspension, called Sucralfate (Antepsin), which seems to sooth the mouth a bit.

My ulcers are getting better, in my mouth anyway (my throat is still very sore).  Here is what has actually been helping in the end: increase the dose of Fluconazone from 50mg to 200mg; the Sucralfate as mentioned earlier; and combination of paracetamol and Tramadol (for the pain).  A Gelclair, oral rinse gel that I was given on Tuesday was too painful to take.  As was the antiseptic mouthwash I have been using.  Nystatin, an antifungal antibiotic did not make any difference. And Bonjela made me scream of pain when I applied that on my ulcers.  Obviously, I am also taking all my vitamins and trying to eat plenty of fruit and veg.

Hopefully, my mouth is better by Monday, not only so that I can have the 4A PMitCEBO, but I also want to stop taking high doses of Tramadol, as they are making me feel so drowsy.

I am back at home.  Sorry for the late update.  I wrote for my blog on Friday at the hospital, please check that as well.

Well, I managed to get out of Homerton hospital on Monday afternoon.  I could not have been any happier.  I was beginning to start losing the will to live in that hospital.  One of the first things I noticed when I was at home, how quiet it was.  Hospitals are so noisy, and you simply do not get any rest there.  Which is ridiculous, as when you are poorly, that is when you need the rest the most!  I felt incredibly tired, physically and emotionally when I got home.

I went to the Royal Marsden yesterday to be reviewed.  My bloods were good.  The kidneys had fully recovered.  However, my mouth is FULL of PAINFUL ulcers, so they did not go ahead with the chemo.  Even though I hate delaying my treatment, I was pleased as I felt I could not take the treatment yesterday.  I felt I was not fully recovered, yet.  I was given medication for my mouth.

I was still quite traumatised by the Homerton experience yesterday, and kept bursting into tears whenever anyone asked me how I was.  The staff at the medical day unit are so lovely, a total opposite to the staff at the homerton.  I was overwhelmed by the kindness I received yesterday after how I had been treated in Homerton.  The sister in the unit was particularly amazing.  She was on her way to have her lunch, but when she saw me, probably looking quite different from the bright and bubbly person that I normally am, she came and sat down to talk to me.  The unit was extremely busy yesterday, but that did not stop her to spend proper time with me and to listen to me, and comfort me.  She decided to order me a taxi home on the department budget.  In the end, I was crying just because she was so kind, and had made such a massive difference to how was feeling.

I am at home, catching up with some sleep, and trying to fix this mouth of mine.  I am in a lot of pain, which is constant. I had to opt for tramadol, as paracetamol alone did not seem to make a significant difference.  Eating and drinking is extremely difficult, but I have been trying.  I can mostly only tolerate cold smoothies, which I drink with a straw trying to bypass the mouth as much as possible.  I have lost 2kg of weight already. I really cannot wait to have my mouth back to normal!

So after the feverish night I had on Monday/Tuesday night things got a lot worse.  I was fine in the morning but after the lunch I began to feel ill again, and had to lie down.  Gradually, my breathing became more and more difficult, mostly on the right side of my lungs.  As I was lying there, wheezing and breathing rapidly, I started also to feel feverish.  My only thought was “I don’t want to go to Homerton hospital!”

Sadly, in the end, I had no other choice than to call The Royal Marsden and tell them what was happening.  They said, I needed to call an ambulance straight away and go to my nearest hospital, which is the HOMERTON!  I tried to persuade the ambulance men to take me somewhere else, but they have their rules; I had to be taken to the nearest hospital.  At least when I got to the A&E, I was seen immediately by the doctors, and they were not so busy as it was Tuesday afternoon, not Friday evening like when I normally end up there.  And there was a really cute doctor on duty!  A bonus.

So it is Friday evening and I am still here, at the Homerton hospital.  By the time I was in the A&E my temperature was over 38.5 degrees of Celsius even with paracetamol.  I had developed a chest infection with pleural effusion on the right side of my lungs.  However, that was NOT the big problem.  The biggest issue was my kidneys, and poor renal function, which was getting worse by day!  I was kind of shocked as I never expected there to be anything wrong with my renal function.  In my view I was going to the toilet like normal, I had no blood in my urine or difficulty in passing urine.  They have been given me intravenous fluids by gallons, which makes me run to the toilet hourly and pass a LOT of fluid.  I think my kidneys are trying to sort them selves out by getting rid of the excess creatine and urea, particles in the urine that should not be so high as they are in my case.

I am worried about the next chemo as I don’t want to miss it.  I have spoken to my key nurse, Lucy, and she said that obviously everything depends on my renal function.  But, she has not cancelled my chemo.  There is some hope!

What a shit week!  To make it worse, I had planned a lot of fun for this week , seeing friends and some good music.  Instead I am here, in this crazy ward, attached to IV fluids, keeping a track of records of how much fluid I take in (i.e drink) and how much I pass out.  The fascinating life of urine!  Oh the joy.

What an awful night I just had!  I was spiking temperature over 38 degrees of Celsius, and had terrible tummy pains.  I woke up my face swollen more than it has been, and my eyes are mega puffed up.  My temperature, and my tummy are fine at the moment, so no need to go to a hospital.  Plus, my white blood cells and neutrophils counts were higher than normal yesterday, so I am not having a neutropenic sepsis.  I am just going to take it easy today.

My blood counts were excellent today, so the 3B PMitCEBO with the Rituximab went ahead today.  I now have loads of boosters in the fridge.  I would be amazed if I get neutropenic!  Hopefully, no more delayed treatments because of neutropenia.

The antihistamine I get pre Retuximab completely knocked me out, and I slept the whole way through chemo today.  Good job Michael came to pick me up as I could hardly walk straight when I woke up.

So the next one will be the 4^th cycle PMitCEBO which could be the last cycle of this chemo.  Although, they did say I might have more of this treatment before the high dose chemo.  It all depends on the PET scan I will have after the 4B PMitCEBO.

I still have my curly hair!!  I love it, and wish I would not lose it.  Sadly, I will, after/during the high dose chemo at the latest.  Oh well, it will grow back, again.

Our Steph got keys to her new home she bought last Friday!  She will be moving out on the 8^th May, which is when our new Dream House mate will move in.  Our new housemate is called, Lisa, and she is 32 years old, works as a lecturer at the Fashion Retail Academy, is keen on having a home, likes cooking, bit of gardening, watching films, nice dinners, and the best of all does not want a party house!  Both Suzie and I had a good feeling about her, and liked her very much.  Even though I am going to miss living with Steph terribly, I am looking forward to getting to know Lisa better.

Thanks to the lovely, sunny weather we have been having lately, I have been able to enjoy our garden, which by the way is a sun trap!  Suzie and I bought two matching sun loungers which will become very handy.

My head feels a bit hazy still, so I am going to go and rest now as I am finding writing a bit difficult…

I did not get the 3B PMitCEBO yesterday as my white blood cell and neutrophil counts were mega low, again!  Argh.  Even with the boosters.  We figured out that the counts go down to practically nothing after each A-part of the treatment.  From now on, I will be getting more boosters after the chemo.  This week I will be injecting boosters every day.  It is frustrating though, I HATE delaying my treatment.

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