I am so late updating my blog!  I have started to sleep better night by night since the weaning of steroids.  So, I am no longer awake most of the night typing away.  I have to find time to write my blog during the day now, like ‘normal’ people!  I have fully stopped taking the steroids as of yesterday, so it will be interesting to see how I will be feeling.  I can tell you already now, I do not feel as energetic as I did on steroids.

On Wednesday I went to the Maggie’s to talk to Jay about Lloyds hassling me, and to join a session run by hairdressers from Cox Mcmillan who had come to the Maggie’s to talk about hair loss due to cancer.  They will be coming to the centre every month, not only to give advice but also to help us practically by shaving/cutting hair as required, and to show us how to use scarves and to help us with wigs if needed.  Apparently when the hair starts growing back post all treatment, it may grow back curly, different colour and texture.  And, you should treat the new hair like you would treat baby hair.  It would be funny if my hair grew back curly!  Over time, the hair tends to go back to ‘normal’ the way it was pre-cancer. 

I was invited for a dinner at my friend Julie’s new home on Wednesday evening.  What a lovely dinner it was!  It was so nice to be able to relax in a calm environment.  It has been so hectic since the diagnosis, actually quite stressful, and I guess I do not relax enough.  I feel, like I need a holiday.  Eloise and Claire joined us later on, and all three of us got to try on Julie’s designs, samples from her work, Nougat London (Julie’s a women’s wear designer).  I got this lovely top made with cotton and silk material (please see the pic below).  Gorgeous.

I was meant to have the operation for the insertion of a portacath at the Royal Marsden yesterday.  Following a review by three anaesthetists, they thought it was too risky to put me under general anaesthetic (GA).  I have had few respiratory problems since the diagnosis, and since GA carries a high risk of respiratory compromise, I was advised to have a PICC line instead which can be inserted under local anaesthetics.  Initially, I was hugely disappointed I was not going to have the portacath, and I thought they were being over cautious.  Now, in retrospect, I am pleased to have the PICC line instead!

What is PICC line then?  It is another form of central venous access device, and the name stands for: peripherally inserted central catheter.  The name explains a lot, PICC is a narrow, long tube that is inserted into the vein in your arm, and then pushed along the vein until it hits the large vein leading to the heart.  

So, I had a PICC inserted yesterday.  It was not painful, and the whole procedure will not leave me any scars!  I have enough scars that it is, so that is a bonus.  The downside of a PICC is, the dressings need to be changed, and it needs to be flushed weekly.  I could have a district nurse to come to my house to do it, but it may be easier if a friend did it.  Minna is coming to the hospital with me today to learn how to do it.  And, hopefully Suzie will be happy to learn the procedure as well.  

One of Julie's designs!

It’s 00:22, and I have just woken up after about two hours of sleep, just like every night.  I began to wean off from steroids on Sunday, three days ago.  It has been quite hard; I still do not sleep, but do not have the usual buzz and energetic feeling thanks to steroids during the day.  I am no longer a super human.  Instead, I have a headache, my eyes cannot seem to tolerate bright lights, and I feel grotty and tired.  I am almost missing the steroids! 

I went to the Royal Marsden to talk to Lucy about my veins on Monday.  I ended up having a long chat with Lucy, and Juanah (one of my consultant haematologists).  We all agreed, my veins will not last through the whole chemo, and it would be advisable to have a ‘central venous access device’ for the intravenous (IV) chemo drugs.  What they tend to do in Royal Marsden is to fit in an ‘implanted port’, which is what I will be getting.  An implanted port, also known as a portacath, is a device inserted under the skin into the body, usually on the right side of chest.  There is a port, made up of a portal body, and this is connected via a thin tube (catheter) inserted into one of body’s veins.  The port can be felt under the skin, but can hardly be seen.  When the entry to the port is required to give me the chemo drugs, they can do this by puncturing through a special membrane of the port with a special type of needle.  I will have the same portacath for the whole duration of treatment.  When it is finished, they will take it out.  Simple! 

The portacath is inserted (and then eventually taken out) by a surgeon, under general anaesthetics (GA), so today I had my pre-op assessment.  My operation is this Friday.  They do not waste time in the Royal Marsden!  Usually, this sort of procedure is done as a day case, however, the anaesthetist who came to assess me yesterday, decided that I should stay the night.  The reasons: the operation would be on a Friday afternoon, if anything went wrong afterwards, I would be in the hands of A&E in Homerton again; I had a complication, bronchospasm during my last GA, so they had to place a longer tube down my windpipe; I have had a chest infection with collapsed lung since the last GA; and I reacted by coughing and wheezing to the Rituximab last Tuesday.  He thought, there were too many little (chest/lung) issues, so for precaution, I will be staying the night.  Let’s hope, I will have slightly more pleasant night than last time!

Portacath

A diagram of an implanted port.

Day 7, and I am feeling fine!  By Friday, I began to feel much better.  I have not have much pain in the kidneys since then.  Maybe the fresh orange juice helped?  All in all, I have been feeling pretty much the way I was before the chemo.  I am back to not sleeping again, but steroids keep me going, and I can continue do my normal activities during the day.  I am being weaned off from steroids since yesterday.  I hope, I will not have some weird withdrawal symptoms, after five weeks of continuous high dose of steroids.  

One thing that has been worrying me since the chemo, is these cramps I keep getting in my left hand, particularly in my thumb.  It is around the same area where I had my first cannula, and I have a feel a nerve may have been damaged during the infusion.  Apparently, this can happen.  I need to speak to Lucy, my nurse at the Royal Marsden about this.  Bernie from Maggie’s said I should think about having a central line as my veins will not be able to take the whole course of chemo.  A central line is a long, thin plastic tube that would be put into a vein in my chest under general anaesthetics, and it would stay there until the whole chemo is over.  I think, I agree with her.  I already struggle with the cannulas, and have the problem with my hand.  This is only the first chemo I have had, there could be five or more to come! 

The weekend was lovely.  Except, Friday night when my sleep was disturbed even further by my housemate Phil’s party, which went on until 8.30am in the morning.  That was when I walked into the kitchen to make my porridge, and these guys went off to a café.  Yet again, I was making my porridge with the smell of old booze around me.  Nice. 

After breakfast I had a lovely snooze, and woke up feeling really good.  No pain, no temperature, and not tired.  This meant I was able to go the Field Day festival!  And, I still got my own hair.  Bonus!

The festival was lovely, although it rained again, like last year.  Luckily, I had a VIP ticket, and got to hang out in the VIP hospitality area where they had a big tent with sofas and other seating.  And, good toilets!  My main goal was to see Minna, Lori, Michelle and Jodie performing with Keiran from Four Tet.  The girls had been practising with their lit hula hoops for a month.  I got to go back stage to see the gig, so I had an excellent view to take some pictures.  The lit hula hoops looked amazing in the dark.  And, the audience loved it! 

I had a chat with Keiran, and he said he could pick me up with his car from my next chemo.  How lovely!  It would be nice not have to travel by District line straight after chemo…  People are so helpful, and generous! 

Yesterday, I caught up with Stephanie, and we had a lovely couple of hours in the park.  I have not noticed that I am any more photosensitive than before, as this is also one of the side effects of chemo.  Maybe, it will get worse in time.

By London Fields, where we had been, a guy came and asked if would consider doing hair modelling, and that he would love me to go to this casting this Thursday for a photo shoot which would pay £150.  He gave me a card and the details.  The photo shoot would be in end of August.  I do not think I have hair left by then!  I did not tell him that.  How funny though.  Shame it did not happen sooner.  I could have used £150.

The lovely Ruth and I in the hospitality tent.

The view from the stage before Keiran's gig.

Keiran

Minna on the stage performing.

This is what the lit hula hoops looked like in the dark. Pretty amazing!

Minna after the show, back stage.

I had another rough morning, with wheezy chest, and really painful kidneys.  They said at the hospital that my potassium levels are low.  Maybe that is the reason my kidneys are hurting.  I must eat bananas and drink fresh orange juice.  Same thing again, bed and sleep after breakfast and drugs.  I did not get up as late though, and I have managed to do much more than yesterday.  I think, what I can learn from this, is not to book anything first thing in the morning, as I will not be fit to do it, not at least the first few days after the chemo.  It is a bit like having a bad cold, and to extent I need to treat it just as that.

However, I have been running around again to benefit agencies, and sending various letters to banks, benefit agencies, and other places where I claim money back.  I feel like there is no end to these letters.  It is a tough world for the unemployed cancer patient.  I do not what I would do without Jay from the Maggie Centre, who has been helping me with my finances.  He has been a true gem! 

Suzie may have swine flu now, so I cannot see her or visit her.  So dull, as today it would have been nice if someone had nursed me a bit.  I am trying to save up some energy, as I want pop into the Field Day festival in Victoria Park around the corner from me this Saturday.  Let’s hope I also have some hair left then!   Maybe all this money stress will make it fall down, who knows!

Stephanie is planning to get a Team Piia together for the Maggie’s London Night Hike 2009.  It is an overnight adventure through London, ‘with the exclusive access to some of the capital’s most incredible architecture.’   The Maggie Centre has done so much for me already, I would love to get a team together.  And, participate, if possible.

I got to go home last night.  An hour post chemo! 

The chemo went really well over all.  They had to give me the drugs very slowly, as it was my first time, and because I reacted to the first drug, called Rituximab.

Rituximab is an antibody designed to target B-calls in non-Hodgkins lymphoma.  It is a clever drug that can trigger the body’s immune system to attack the cancer cells, and can sometimes cause the cells to destroy themselves!  I like the idea of the cancer cells killing themselves…  Anyway, after an hour so of slow IV infusion, I started to wheeze, and cough, so they slowed the infusion and gave me anti-histamines and corticosteroids, after which I was fine again.  The only other side effects I had were sleepiness from the anti-histamines and sweating. 

They gave the drugs individually, one by one, not all at the same time as I had imagined.  They had a strict protocol that they followed, adjusting it to me, how I was feeling.  The other drugs they gave me intravenously were: Cyclophoshamide; Doxorubicin (used to be known as Hydroxydaunorubicin); and Vincristine (originally known as Oncovin).  The whole collective of the drugs are named R-CHOP after the initials of the original drugs.  Obviously, I also had had my usual drugs, like steroids, paracetamol, anti sickness, tramadol, etc that morning.  I have no idea how my little body can take so many drugs?!

The whole procedure to infuse all the drugs took 8 and a half hours!  Some of them were infused slowly, and the last two very fast.  My first cannula did not last until the end, they had to insert another one in my other arm for the last two drugs.  They had to be very careful that the drugs were not leaking onto my skin, as this can be very harmful.  My advice would be to inform how you feel all the time, any pain, any new sensation can be vitally important.  But, like I said, I got to leave the hospital one hour after everything, and I did not feel too bad. 

This morning I woke up feeling rough though.  I had my usual breakfast, porridge with soya milk and banana, followed by the usual drug cocktail.  Afterwards, I had to go to bed to sleep, and I did not get up until after midday.  I am definitely more tired, and generally run down than before the chemo.  I am doing a simple fatigue diary from Cancerbackup that Minna gave me.  Hopefully, it will highlight when I am feeling the lowest, and the brightest, and give me clue when it is good plan activities, and when not.  Today, I can safely say, I need sleep.

Here we go! The chemo has just started.

The Rituximab.

I went to the toilet, and when I got back, Suzie had got me a little present: a bag from the 'Friends of the Royal Marsden-shop'. It has been designed by Lulu Guinness, exclusively for the hospital! Apparently, she lives around the corner from the hospital.

Looking rather tired after 8 and half hours of chemo...

What an awful night.  I HATE sleeping in hospitals.  It seemed to be particularly bad here last night.  The staff kept the full on lights on at least until about 1am, and there was no peace whatsoever.  

I waited for them to start the IV fluids all evening, unable to go to sleep even though I was feeling totally knackered and headachy. In the hospital, I am not really allowed to take my own drugs, as they need to keep a record of everything I have, to prevent double dosing me.  I asked them if could inject my anti-clot injection.  As this drug was not written in my drug chart, they had to call the on-call doctor to prescribe it to me.  I could not go to sleep until that had been done.  Finally, at about 1am, they had set the IV fluids, I had given myself the injection, and could finally go to sleep. All I could think of was, thank God, they had not started to chemo!  The staff could not have been able to look after me.  Absolutely, no way.

The worse thing about hospitals for me is the loss of control.  I no longer can go and do the simplest things by myself without asking for permission.  For instance, they took my steroids away from me, this morning, as they want to control when I have them.  I refused to give them my Tramadol. 

I was not in a good mood this morning, not feeling as positive as I have been.  I found one of the nurses quite rude.  She kept calling me ‘princess’ when I said I would like to have a wash before the chemo starts.  I found it extremely offensive.  I had not been bothering the staff, and I was more than happy to help myself as much as I was allowed.  Wanting to have a wash in the morning does not make me a princess.  Even the hospital expects patients to practise good hygiene.  All I asked her was to disconnect the IV fluids whilst I have the wash.  She was too busy, so I had the wash with it.  Much later, she came and asked if I wanted to be disconnected from the IV fluids and go and have a wash.  When I said, I already had one, she said:  “I knew you were a true princess!”

So, the chemo starts today.  And if all goes well, I get to go home afterwards, and I do not have to stay here the night!  I am more than determined to go home, so I will NOT have a bad reaction to the drugs!

Today was meant to be my first day of chemo.  I woke up with a headache, after another sleepless night.  This time, I made the most of it, and typed three letters to Lloyds telling them I cannot keep on paying my payments at the moment, organised some paperwork, sent some email, etc.  Afterwards, my head was buzzing from that entire organisation!

Suzie came to the hospital with me.  First we needed to go to a ‘transitional unit’, which is a place where they assess patients and get them ready for the ward whilst waiting for a bed in the hospital.  The staff in the transitional unit were amazing, so helpful, and polite.  We were offered endless amount of tea and other refreshments, as well as snacks.  Suzie was very impressed, as in Homerton she was not even allowed to have a glass (neither was I some days as they had run out)! 

Minna turned up after 2pm, and about 3pm we were all escorted to the ward. 

In the ward, I was told, they were waiting for my chemo drugs.  At 6pm, I thought, surely the pharmacy is closed by now…  I asked the nursing staff, and they said they had my drugs.  Then there was the issue of intravenous (IV) fluids.  Apparently, in my notes is said, I would need IV fluids for 6 hours prior the chemo.  In the end, a doctor on-call came and brought us the bad news; I will not have the chemo today after all.  The main problem being, evening/night staff, well the lack of it.  When they start the chemo, I will need to be closely observed, every half an hour, and frankly they would not be able to do it over night.  Also, if anything went wrong, there was only one doctor on-call.  After hearing that, I was not confident to start the chemo, and happy to wait until the next morning. 

 It was disappointing though, a bit of an anti climax, for all three of us.  Suzie had been with me hours by then, and Minna had taken a half day, and Suzie the whole day off from work to be with me, and then nothing, after a whole day of waiting patiently.   I had had a nice day though hanging out with my two favourite girls, eating heaps, and heaps of food, chocolate, crisps, caramelized ginger…. 

Suzie went home, and said she will come back in the morning.  Minna and I decided to go out and get some dinner together.  We went to this Italian delicatessen/restaurant, Garluccio’s where Minna treated me for some delicious antipasti, and salad with Gorgonzola cheese!!  Yes, I managed to squeeze a moment with this gorgeous, creamy cheese before chemo.

Suzie & I taking the tube to the hospital.

Minna is reading about R-CHOP.

I am all ready for the chemo!

My raised chest and glands in my neck.

The time went by quite nicely eating yummy chocolate!

The view from my bed.

In the restaurant. Check out my accessories!

The main entrance to the hospital.

I have slept so much in the last two nights!  Well, compared to the previous two weeks anyway.  I could hardly get out of bed today.  I slept until about 4pm!  I felt like my body needed it.  Obviously, now I cannot sleep, and it is nearly 2am…

I have been feeling quite unwell since the egg harvesting, tired and slightly feverish.  Maybe it is the antibiotics that are making me feel like that.  I am a bit annoyed, as it is my last weekend before chemo, and there was a lot I wanted to do, but I have spent most of the Saturday sleeping. 

I have managed to squeeze in some fun activities this weekend though.  Suzie and I went to the cinema tonight, to watch the latest Harry Potter movie, the Half Blood Prince. 

And, last night I made an effort, put some (extra) nice clothes on, and Helena, my housemate did my make up.  She made my eyes look amazing!  I met Minna in town, and we went to the Waterstones in Piccadilly to listen to some live reading and to Kenny from King Creosote play his tunes.  It was also Bart’s, my friend’s birthday celebrations, so afterwards we went to the pub.  It was lovely to see my friends from Domino Records, and to meet some new friends.  Everyone thought I looked amazing, and thought I was doing so well.  Clare, my friend was telling me about her grandfather who had the same cancer that I have when he was in his 80s, and he got completely cured!  

Some people were asking how I am doing ‘emotionally’.  I can talk about my cancer endlessly, but when it comes to my emotions, I do not what to say.  It is mostly because I do not know how I feel about it all.  So much has happened in such a short period of time, that I do not know even where to begin.  Few people have said, that people with cancer are in ‘auto pilot’ during the treatment, and then have the shock afterwards, which is when they end up dealing with the emotional side of things.  We will see how I will do.  I am doing my best to deal with this, both physically and mentally.

I loved the eye make up Helena did for me on Friday.

My raised chest due to the cancer. I took this on Sat.

Can you see the raised chest?

Today was the ‘egg harvesting’ day!  I was up bright and early.  Well, actually I have been up mega early every morning, simply because I cannot sleep on steroids anymore.  Sunday night, for instance, I only had one hour sleep!  I mentioned this at the Royal Marsden, and they gave me some sleeping tablets to try on.  I had one on Monday night, and managed to sleep maybe about 3-4 hours.  The steroids give me such a buzz that even though I have not slept well for ages, I can still function normally during the day.  I used to be such a talented sleeper.  

At the Barts all went well.  I was worried they were not able to sedate me due to the steroids, but that was no problem in the end.  I have no recollection of the actual operation, and afterwards managed to have a lovely snooze.  The lower abdominal pain was pretty bad when I finally came around, but after a snack, ibuprofen followed by Tramadol, the pain reduced enough for me to travel.

Suzie came to pick me up, and she has not left my sight all day as instructed by the hospital.  She has been taken such a good care of me, cooking me lovely, healthy food, and she got ‘Becoming Jane’, a film about Jane Austen from the library for us to watch in the afternoon.  Lush. 

Earlier, I had a call from the Barts telling me the egg harvesting was successful; they managed to get six eggs, five of which were mature!  They are freezing all the six eggs, including the non-mature egg for ten years.  I am very pleased to have done it.

I was going to text Gow today to see if he was free to go wig accessory shopping with me today, but he beat me to it!  I cycled to over his, and we first had a look on eBay how much they were charging for the various items we were planning to purchase, like poly heads, wig tape etc.  Then, off we went to this fabulous hair/wig/cosmetics shop in Dalston.  Everything was so cheap there, and I got pretty much all that I was after.  Gow was brilliant, he knew exactly what to get, and where to find it.  All staff knew him there. 

Afterwards, Gow treated me for some yummy Chinese dumplings, or ‘parcels of joy’ how Shawn and I like to describe them.  On the way back to Gow’s, we decided it was a good idea to cut my hair a bit shorter before the chemo.  I let Gow simply do what he wanted, and the end result was a cute bob with a short fringe. 

Gow said to call him day or night if situation gets bad, and my hair starts to fall, he will then shave it for me.  What a gem!  The day before he was styling Florence’s, lead singer from the Florence and the Machine hair for a photo shoot with Rankin, and today me!  And, all free of charge.  He made my day, I felt so pampered.  

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