The 3A PMitCEBO went ahead yesterday as all my blood counts; especially the white blood cells and neutrophils were excellent!

I have been having mega runny eyes since it has been more spring-like.  I could not figure out what was causing it until few people mentioned it could be due to hay fever.  But, I have never had hay fever before?  Then again, I have never had photosensitive skin, or freckles, or curly hair before.  Anything is possible!  Steph gave me an antihistamine tablet on Saturday before I was going to go on a picnic in Hampstead Heath, and it worked!  My eyes eventually stopped watering.  I got some of my own antihistamines from the hospital yesterday.

Yes, we had a picnic on Saturday!  The first of the year.  The morning was really warm and sunny but then it turned into part cloud with a cold wind, so we did not last very long and ended up in a pub.  We were all freezing in the end!

I had the CT-scan on Friday.  I did not expect to get any results until next week Monday, but Lucy went off and chased the results!  She is so efficient, an amazing nurse.  So, here are the results (they have compared the results to the previous scan): there has been no change in the lymph nodes above the my left collar bone which measures 2.5 x 1.5cm; and there has been a REDUCTION in the size of the mediastinal soft tissue disease, it has reduced from 5.7 x 3.0cm to 5.7 x 1.8cm.  The mediastinum is the part of the body deep inside the chest, between the lungs and behind the breast bone.  This area contains the thymus gland and many lymph nodes.  And, all my vital organs are still fine!  I know it is a small reduction, but a reduction all the same, and there has been no new growths.  I am pleased.  I am only half way through this chemo.  Lucy also said that some of that mass can be scar tissue, not active cancer, and that they are planning for me to have a PET scan after the 4^th cycle.

I am feeling pretty good today!  This chemo seems to suit me, as much as any chemo could suit anyone.  And, I am finally only on 50mg of Prednisolone every OTHER day from now on.  Finally weaning, although slowly, off them!!

Hampstead Heath by the Kenwood House.

Picnic food! Yummy!

Daniel is getting cold and wrapping himself around the picnic blanket.

Jukka and Colette warming up under the blanket!

Jukka test riding my Dutchie bike. I believe he ordered himself his very own Dutchie yesterday!

My bloods were fabulous after the holiday, and the 2B PMitCEBO with the Rituximab went ahead today.  I was pleased to report back to my medical team that I did not get ill at all during or after the holidays.  Maybe they will let me travel again!

I am feeling pretty tired now though, and will try and take it easy tomorrow.  Although, there is already loads of things I need to do: go to Tesco’s to get food; advertise Steph’s room in Gumtree (Steph is buying her very own flat, so Suzie and I need to find a new Dream House mate); apply for the ‘discretionary housing benefit’ for the third time in less than one year as they have stopped it, again (!); rebook my 5-day retreat at the Penny Brohn Cancer Care Centre, as I will not be able to go there in the end due to chemo; and yes REST!

I am feeling pretty happy though, thanks to the holiday, the lovely spring weather we have had today, the fact that my neutrophils were great today, and I finally had the 2B chemo.  Two cycles down, and a CT scan scheduled for Friday.  Fingers crossed I will get some good news about this scan.

I did not have the 2B chemo last Monday as planned.  My neutrophils were too low, again!  Luckily not so low that I could not go on my Lanzarote holiday.  It is frustrating that these neutrophils keep going down regardless of the boosters, as I hate delaying my treatment.  Lucy, my lovely ‘key nurse’ reassured me it is normal for them to go down when one has had as much chemo as I have had, and they are not concerned me missing chemo.

So last Tuesday I flew to Lanzarote to spend about six days with my mum and my step dad, Jukka.  I felt like I was going on a holiday with a child, except in my case the child is my cancer.  I had to plan and pack so much extra stuff for the cancer.

It was important that I did not leave any drugs behind.  I was advised to pack all the drugs as hand luggage in case my suitcase went missing.  To my surprise, I had no problem getting my boosters through the security, even though I was carrying injection syringe needles with fluid inside them.  Tip: bring a letter from the hospital explaining about the drug in case you get into trouble.

The flight went well.  I had prebooked a seat by the isle so that I could easily stretch my legs and have a little walk every now and again to reduce the risk of DVT.  Oh, and I was wearing flight socks as well.  I found these black knee high flight sock from Boots, which look just like normal knee high socks.  Highly recommended.

It was almost surreal to arrive into ‘summer’ after such a harsh, cold winter.  As soon as I had got off the plane, I got rid of the woolly tights and shoes and wore my flip-flops!  I have enjoyed this holiday so much.  The sunshine and the warmth have been so therapeutic.  I have had to be mega careful about the sun though.  I have noticed that my skin is definitely more photosensitive, and seems to burn far easier than ever before.  I used to wear SPF 15 and be fine with it, but now I burn even with SPF 30, and really have to use SPF 50 at all times.  Also, I seem to have got brown spots and freckles, which is also a new thing.

I have not done much on this holiday.  Every day I have gone for a long walk by the seaside, and the afternoons I have spent reading.  Perfect.  It is a quiet resort.  There are mostly families and old people.  Suits me fine.  And, I have only worn my wig twice in the evenings when we have gone out for dinner!  I love my wig, and I will continue to wear it once I leave this place, but it has been so liberating walking around without it.  Oh, I should mention that I have hair.  My hair started to grow during the second chemo, as those drugs do not cause hair loss.  It is thicker and fuller, and curlier than before!  However, I will lose my hair again with this current chemo.  But it has not happened, yet!  I suppose in London, I do not want people to know I am wearing a wig as this would raise questions (and I do not want all people to know I have cancer) if for one minute I had long hair, then short hair, and then long hair again!  Nobody knows me here and I do not care what people think of me here.

It is Easter Sunday and I am flying back to London this evening.  I do not really want to go.  Actually, what I would really like to do is to get on a plane and fly somewhere other than London.  Maybe Barcelona!  I suppose, I would like to continue this ‘cancer free’ holiday a bit longer.  I have to go back, and continue with the treatment, otherwise how else am I ever going to get rid of it.  I simply have to plan more holidays, as they are definitely the best way to boost my moral, motivation and my spirit!

Lanzarote! It was so quiet there. Even the beaches were pretty much empty. Lovely.

I love being by the sea, and the sun!

My blood counts were good again, so I had the first part of the second cycle (they call it 2A) of this new chemo today.  The boosters seem to work.  The chemo went really well, I had no reaction this time, no hot flushes, and no nausea.  And, I finished at 4.30pm, and managed to avoid the rush hour.  Michael and Ruth could not pick me up today, but it was fine, the journey back on the tube was not too bad today.

Oh, I have not mentioned, but I am off to Playa De Los Pocillos (near Puerto del Carmen) in Lanzarote, Spain next Tuesday after my chemo on Monday!!  My mum and step dad are off there for a two-week holiday, and mum said they have room in their bungalow and invited me to join them.  I asked my medical team about going, and to my surprise they said yes!  They do not like me traveling far in case something goes wrong, but since I am only going for 5 nights, they said I can go, but I will have to take my boosters, a letter from the doctors explaining what to do if I get ill, and some prophylactic antibiotics if I get fever.  I am so excited about leaving London again, and going somewhere warm and sunny!

Hello everyone!  Long time no blogging.  Sorry about that.  My computer hard drive died so I was without a functioning computer for a little while.  I have a new hard drive, and an external hard drive for backing up, thanks to Geoff, Suzie’s ex.  He saved me.  Sadly, I lost my pictures and my music, as I had not been backing up my computer.  Very bad of me.  Well, I have learned my lesson.

So what has been going on…  Quite a bit.  Here is my little update.

I petitioned for bankruptcy on the 24^th February.  I had had enough of Lloyds hassling me.  They sold two of my debts to two different debt collectors, so I had both of them calling me every day, and sending me threatening letters.  There was no way of settling it with Lloyds.  I had tried, very hard, to no avail.  The bankruptcy was my best option.

I had to go to the Royal Court of Justice to file my bankruptcy!  What a day.  I have to say the hardest bit of it was to navigate my way in the massive, maze of a building.  Other than that, it was pretty easy, and in the end I was granted my bankruptcy!  Result.  The good news is I should be free from bankruptcy in six months time.  They are ‘fast tracking’ me, as my case was pretty simple.  The best thing is, I do not have to worry about evil Lloyds ever again!

On Monday the 1^st of March I was meant to have my Day 8 GEM-P-R chemo.  At my clinic appointment, my consultant delivered the news of my latest CT-scan.  My case had been discussed at the multidisciplinary lymphoma meeting, and they had noticed a slight progression of my cancer on the ‘paratracheal area’ whilst the remaining cancer sites being stable.  Basically, my cancer was growing in a new place and the GEM-P-R was not really working for me.  Therefore, the best option was to change my chemo immediately to PMitCEBO chemotherapy with Rituximab.

The drugs used in the PMitCEBO chemo are: Mitoxantrone; Cyclophosphamide; Etoposide; Bleomycin; and Vinblastine.  The Cyclophosphamide and Vinblastine I have had before with the R-CHOP chemo.  It is a weekly chemo with no breaks, and it is split into two parts.  Day 1 I get Mitoxantrone, Cyclophosphamide and Etoposide, and the following week the Bleomycin and Vinblastine as well as the Rituximab, my bonus chemo drug!  I no longer need to take the horrid Methylprednisolone; I am on the basic Prednisolone, 50mg instead, although ongoing (i.e. not just for the 1st five days, I will have to take it every day).  Maybe, my bloated face will start to go down a little.

I had my first part of this new chemo on the 1^st March.  It went well, except I felt ever so sick afterwards.  I have not had that bad feeling of nausea since the treatments began.  It lasted about two days.  I have been fine since.

I have also been very neutropenic.  They could not give me the second part of this new chemo the following Monday as my neutrophils were practically non-existent.  They were so low that the machine could not record them, and my white blood cells were 0.5.  It is funny, I felt pretty good on that day!  I was also anaemic, which could explain why had been so breathless for a couple of days.  Instead of chemo, I was given a bag of blood, which made me feel much better!  Must have been some good blood.

Because of my low white blood cell and neutrophil counts, I am now on ‘boosters’ every week.  I have to inject myself with G-CSF (granulocyte colony-stimulating factor) to stimulate my bone marrow to increase the production on neutrophils.  I do not want my chemo to be delayed because of low neutrophils count; I rather inject myself with G-CSF everyday.

I managed to go to the Homegame festival in Anstruther, Fife, Scotland last weekend.  This was my first proper mini break since the Homegame festival last year April.  A long time ago.  I was worried, I was not able to go since my neutrophils were so low on the Monday, and I woke up with a sore throat on Tuesday morning, but in the end the boosters and rest did the job, and I was fine on Friday when we took the train up north.

It was such a LOVELY weekend of sea, sun, friends, music, fish and chips, dancing, chilling out, and forgetting about cancer for a couple of days.  I really need to get out of London more, and have these mini breaks, as they seem to cheer me up tremendously.  Also, these trips motivate me to keep myself well and strong, as I want to be able to go.

My chemo was moved from Monday to Tuesday this week due to my trip.  My blood counts were excellent, better than they have been for a long time.  The boosters and the blood transfusion must have done the job.  Or maybe my cells were still happy from my mini holiday to Scotland!  So, I had the part two of my first cycle of this new PMitCEBO chemo.  They also had got funding for the Rituximab again, so I had that too.  Every time they change my treatment, they need to re-apply funding for the Rituximab.

The last couple of weeks have been very stressful, but I am beginning to feel positive again, particularly after my trip to Scotland.  Also it really helps that the weather has improved and it is almost spring.  It is amazing not feeling freezing all the time!

Me in Anstruther, Fife, Scotland.

Jon, me and Emma outside our lovely B&B.

This view was near our B&B. So pretty.

Minna eating the famous 'fish supper' from the 'best fish & chips shop in the word', The Wee Chippy.

Sun bathing outside our B&B.

Minna and I.

Good news, I do not have fever and my bike problem was solved on Tuesday when my lovely friend Mark said he would pick it up for me!  I could not thank him enough.

On Wednesday, Suzie and I went to see this stem cell transplant specialist at the Royal Marsden Sutton branch.  It took us two and a half hours to get there!  The meeting was quite long, and overwhelming.  He talked us through the stem cell transplant, and the high dose chemo procedures.  I will not go into the details, not just, yet, but let’s say it is all pretty hardcore.

I got a good vibe of the hospital, which is important since I will be spending at least three weeks there.

I also had the CT-scan yesterday.  Obviously, I do not know the results, yet.  Maybe, my team can tell me the results at my clinic appointment on Monday.  I hope so.  Fingers crossed the tumour has shrunk.

My plan now is to keep myself free from any illnesses until Monday, so that I can finally have my chemo!

Firstly, I would like to point out that my rant about the Homerton hospital does not apply to Royal Marsden; to be an in-patient in the Royal Marsden is, well has been mostly a positive experience.  The staff there are wonderful!  Even the food is better.  Anyway, I just wanted to clarify that.

My fever still continues.  I seem to get it in the mornings and evenings.  Still no other symptoms.

My chemo has been re-scheduled to next Monday, and I have an appointment to have a CT-scan this Thursday.  Also, I am still hoping to be able to go to see the stem cell experts at the Sutton branch of Royal Marsden this Wednesday.

I managed to go for a lunch at our favourite pub, the Cat & Mutton yesterday.  Suzie’s dad and mum wanted to treat us (Suzie, Steph and I) for a lunch on Valentine’s Day.  It was such a lovely lunch, great company and delicious food.  It really cheered me up, especially after the Homerton experience!

I took my bike to a bike shop, Two Wheels Good in Stoke Newington last Thursday.  My dynamo lights needed fixing.  As you know, on Thursday I ended up in hospital, and since then I have not been well enough to pick it up.  I called them on Saturday to say I was in the hospital, and they were quite understanding but said I needed to pick it up as soon as possible.  I called them again today to say I was still unwell.  This time, they were not so sympathetic.  They said they will start charging me extra soon for storing my bike.  How mean!  I want to pick up my bike as much as they want to get rid of it, but I cannot because I am ill.  Not very nice people….

Suzie and I at the Cat & Mutton having Sunday roast on Valentine's Day

Steph, Suzie and I

I am going home, just after one more dose of IV antibiotics.  My temperature is still going up, but is can be managed with paracetamol.  Oh, I so rather be at home!  Happy days.

I began to feel to feel unwell on Thursday afternoon.  By six o’clock in the evening my temperature was 38.7 degrees of Celsius.  Naturally, I called the Royal Marsden, as whenever I have fever 38 degrees of Celsius or above, I have to have a blood test to establish if I am neutropenic.  Increased temperature is an indication of an infection, and if you are neutropenic as well, there is a risk of becoming septic, which can be life threatening.  The Royal Marsden was full, so I had to go to the nearest hospital, the ‘lovely’ Homerton.

Susanna kindly came and picked Suzie and I up, and drove us to the Accident and Emergency Department.  Lucy, my key nurse had already called them and informed them about my situation.  We did not have to wait too long to be seen by the nurse (thanks to Suzie who managed to squeeze me before two people who were there before me).  By then my temperature was 39.2 degrees of Celsius!!  My personal best. I was asked to dress down to a hospital gown, as all the layers I was wearing were making the fever worse; I needed to cool my body down.

Again, the staff were unhappy (?unable) to use my PICC line, which meant they wanted to insert a cannula for IV antibiotics.  Boy, I HATE cannulas.  I am still here in Homerton, and so far I have had FOUR cannulas (since Thursday evening)!  The latest one was inserted at 6.30am this morning.  What a great way to wake up, being stabbed by long sharp needles.  Yes, the first cannula did not last very long.  I got bruising and swelling along the vein, and when they took it out it was bleeding profusely.  It even stained my night clothes.  My left arm is so bruised!

They have not found the cause for the high grade fever.  I do not have sore throat, cold, flu, diarrhoea, vomiting, chest infection, ear infection, or urinary track infection.  I do not have any symptoms that would pinpoint the source of this infection.  Even my neutrophils were within normal range.  But, there is an infection.  Where it is, is a mystery.

They have given me super strong IV antibiotics to kill this mystery infection.  I am still not feeling great, but the fever has not been too bad.  Mind you, I have been talking paracetamol to lower it.  This morning, I am not taking them because I want to establish if I am still getting the fever.  Hopefully not.

I am going home today, no matter what.  I cannot stand being here any longer.  The food is diabolical, the staff not particularly friendly, the bed is uncomfortable, I have not had a proper wash since Thursday morning, there is a girl opposite me vomiting in regular basis, and another woman shouting “I want to die”, they do not allow you to sleep very much keeping you awake at night, and waking you up ridiculously early, and they like stabbing you with needles!  I have come to a conclusion: being in a hospital is a form of torture.  Well, in Homerton anyway.  On a positive note, I am possibly resting more during the day than I would at home where I can always find something to do.  And the IV antibiotics do not cause me diarrhoea like the oral ones do.  Two nights have been enough though; I AM going home today.

Because of this infection, they cancelled my CT scan which I was meant to have on Friday, and they have cancelled my chemo on Monday.  It seems to be a norm to move my chemo dates due to my poor health nowadays.  I suppose, my body is not coping as well as before with this new, stronger chemo.

I quizzed my hospital team regards to the steroids (Methylprednisolone) that I get for five days starting on the 1^st day of this chemo, GEM-P-R.

When I was getting the R-CHOP, I used to get 100mg of Prednisolone (also steroids) for five days, and did not suffer from major side effects.  However, with this chemo, I get Methylprednisolone as part of the regime, and I have been getting very bloated, swollen face, insomnia and loads of excess fluid all over my body, all which make me feel incredibly uncomfortable.

Ever since the first GEM-P-R, I have asked the doctors why I need to have the Methylpredniosolone and not the Prednisolone.  No one so far has been able to give me a clear answer, they just simply did not know.  But, today, Michelle one of the ‘key nurses’ said she knew the professor who designed the GEM-P protocol, and she said she would ask him.  Apparently, I would have to take 250mg Prednisolone per day to match the dose of Methylprednisolone.

No wonder, I have been getting these nasty side effects, as I am getting over twice as many steroids than before.  Also, Methylprednisolone is actually part of this regime, not just there to support it.  So, I suppose, I will just have to endure them.

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