I have had sore, bloated tummy since Friday, which is causing me constant discomfort and pain.  Overall, I have felt pretty rough all weekend.  Luckily, I am able to sleep again.  Actually, I have slept pretty much all weekend.  Another thing to report is, my hair is starting fall down and it has thinned a lot.  I have no bald patches as, yet.  But, I think I am not far from it. 

The dressings of my PICC are already annoying me.  It is really hard to keep them dry when I have a wash.  So far I have been using cling film to cover them, but it is not sufficient enough.  I have to think of a better and easier way to protect the dressings from getting wet, as I will have to deal with this for months! 

I have had a relaxing weekend at Minna’s though.  She has been taking a good care of me.  We popped into the Royal Marsden yesterday to see nurse Arlene who changed my dressings and showed Minna how to do it.  Sofia came to see me at Minna’s in the afternoon.  Her kinesiology teacher had written down a ‘cancer programme’ for me, and Sofia brought some special kinesiology supplements I should take during chemo, and five days after chemo.  Her teacher sold the supplements with a bargain price, £10.00!  I think they would normally cost about £70.00… People are so kind and generous. I will try this programme next time I have chemo, which is one week away. 

The plan is to go to a restorative yoga class tonight.  I hope I feel well enough to do it.

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.

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