Edging further forward

Just a quick post – I’m just back from the hospital and No 5 is done, thank goodness!  I’m just at that fuzzy, blurry, numb stage at the moment so will put this down quickly before the side effects which are hurtling headlong towards me finally kick in.

Things were a bit different this morning.  I checked in to Counter No 2 as usual.  However, almost immediately I was ushered to the lab for blood tests.  Oh no!  Where was my lovely oncology nurse with her picnic basket and gentle touch?  Reluctantly, and somewhat petulantly I agreed to put my right hand down so that they could stick another needle in me.  This one was also different.  No syringe but a thin plastic tube.  When it was finished I saw that they had taken three vials of blood.  Hmm – do I have any left?

Then the usual weight and Blood Pressure checks – weight down a further 2 kg (thanks nausea and foul tasting mouth) and BP high – surprise – what do you expect if you are going to stick needles in me and then pump me full of toxic stuff!

With these changes and the lack of the oncology nurse, I really expected a change in process too with the new type of chemo.  Eventually though we saw Dr W2 and he did the usual checks and pronounced me fit for number 5.  However, he did say that he was a bit concerned about my white cell count and that I have to come back tomorrow for a booster shot.  Great!  I usually have 3 needles to fear over the course of each chemo cycle.  This time I have an extra two with the additional blood test as well as tomorrow’s jab.  I am getting such a scaredy about the needles, though with reason as the tenderness of the skin and tendency to bruise alarmingly mean that a jab is really sore.  He also said that this new chemo (Taxotere) has a risk of allergic reaction so I would need to be observed and monitored careful.  Lovely – something else to add to the list of anxieties.  It also has new side effects including fluid retention, depletion of white cells and joint pain.

Then off to the 5th Floor and oncology ward.  One thing on my mind was that I had not had numbing cream put on the port area.  Usually the oncology nurse does this when she takes the blood.  My port may be amazing but it is also scary and tender inserting the needle and any extra help to reduce pain is something I actively look for.  I also know it takes time to work so was able to obsess nicely about the cream, the possibility of allergic reaction as well as everything else.

Lovely oncology nurse put on some numbing cream and left me for a while to let it take effect.  It is so nice not to feel under pressure, though it is a good time to nurture and breed those worries.

Soon enough she was back with her clanky trolley and started to prep me with the usual procedure – remove the cream, clean the port area, give it a wee press (ouch) for good luck, set out the green surgical gauze and then take out the needle.  More yoga breathing and in the needle went, with a bit of a squeal this time the port area being quite tender.

Three hours later, several infusions of saline, one of Taxotere, numerous side effect meds, the usual anti clotting agent and another squealy moment when the needle came out, and all was done.  Given that the port site is a lot more tender than usual and needed a bit of pressing to stop the bleeding which was a bit whimper inducing I asked the nurse if it is all right to swim tomorrow. Her response (paraphrased) was something along the lines of – if you feel well enough to go swimming then go ahead.  She made it clear though that she would be rather surprised if I could!

I’m now at that numb, fuzzy headed, repeating myself stage – ironically incapable of deciding on chemo treat 5, and waiting to see what new side effects Taxotere will bring me.  One thing is sure – I will be sharing them all here!

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Mixed feelings

Oh dear, it’s that time again.

Mixed feelings abound.  We left Yangon this morning, sad to leave home and head back to limbo.  Our journey to Bangkok was uneventful but my mood was dark with tension and nervousness.  However, it is also good to be back online as connectivity at home is increasingly difficult.  (WordPress is no longer accessible, twitter has also disappeared and intriguingly the in box of facebook  remains unopenable).

I repeated the blood test on Thursday, unsure of how or whether the counts would have increased.  A stomach upset at the weekend had sabotaged my attempts to rebuild my strength.  However, the results came back with a clear increase in the main levels.  The essential and naughty neutrophils had increased quite a bit.  The normal range is between 1.5 and 6.6 apparently – at 1.1 last week mine was clearly too low for another dose of destruction.  The repeated test showed an increase to 4.78 – now I have no idea what that all means but it is clearly a lot higher than it was and also nicely within the normal range.  Now I just hope that Dr W2 is going to be happy with the results too and that chemo 5 can go ahead.

As usual, I am anxious that this chemo goes ahead, particularly now that it has been delayed.  However, as always I dread it so much a significant part of me would secretly be relieved if it can’t go ahead.  Though not so secret really given that I have posted it here, I guess!

This time though, there is an additional anxiety.  At the halfway point of chemo, apparently the regimen changes.  I have had four cycles now of an eight cycle course so that is pretty clearly the half way point.   I have had my full dose of part one (described here) and now move on to a new unknown chemo.  This is scaring me witless (rhymes with………) As much as I detested the first picnic, the unknown feels extremely scary.  The side effects will in all likelihood be different and some new delights are in store for me.

No matter how mixed my feelings are though, one thing is for sure.  By this time tomorrow I will at least know whether or not I am at number 4 still or have moved on to number 5.

Chemo treat 4

My friend J’s suggestion of a treat following every chemo has been such a good idea. Sometimes however the execution of the treat from concept to reality has been problematic – such as the disastrous downloading music treat which destroyed my whole iPod library! (I am building that back better now!)

So far though, treat No 4 has been my favourite.

Now that I had managed to get into, and more importantly, out of the pool, I reckoned that it was time to revamp my pool attire. Especially considering I have only one swimsuit and that is from another context,never mind another era in terms of “fit”. This is a glorious costume that I got in India and is very much or the subcontinent contexts. I remember the first time I saw some women paddling in the sea in India. They were fully clothed, wearing beautiful saris or flowing salwar kameez in order to maintain their modesty. Living in India, I soon adapted and even found it very comfortable swimming in the Andaman Sea fully clad!

Interestingly however, swimming pool dress etiquette in India is completely different. Women of course still have to maintain modesty,but in most pools it is not permitted to wear loose or baggy bathers such as the practical Australian style. No, they have to be fitting,but unrevealing. Ironically this is impossible. So my marvellous Indian ” Speedo” costume came up to my neck, and pretty much reached my knees. Appropriate? Yes. Decent? Hmmm – a matter of  opinion! Put it this way, I always managed to ensure that the time between towel removal and pool immersion was less than a nano-second.

So, for my chemo treat No 4, a new swimsuit was the perfect choice. It would mean I could take my time when getting into the pool, feel more comfortable in a less revealing style, in a practical way have a change if I want to swim more than once daily – and most importantly,it would be an additional motivation to swim regularly.

So I persuaded hubby that Wednesday was the day, before groundhog enveloped me (I have stronger anti-side-effect meds for the first two days after chemo). On with the surgical mask, off to the skytrain and into the swimwear section of one of the large stores.

The choice was immense, but my selection criteria restricted things considerably. I settled on a couple of promising options and  reluctantly set to try them on – after all there was no point in getting something which did not fit or was not comfortable. Some treat that would be.

By this time though I was feeling tired, yucky and a bit sick so the fitting session was not exactly fun. Twang arm was really playing up, and the fitting room was a reverse Tardis – seeming spacious from the outside but the size of a post box on the inside. As I struggled with the changes, I realised I was singing along to the piped muzak, not realising immediately how ironic it was to be singing ” Things will never be the same again” (by Mel C). You’re not kidding – things will never be the same again, lah lah lah!!

The first choices were not so good, the more promising one having been designed for someone at least 6 inches shorter than me, who had probably had a double mastectomy! (For those who do not know me – I strain to reach 5’1/2″ on a good day).  “Things will never, never, never be the same again”, I chirped along with Mel C as J brought me more options to try on. And amongst them was the perfect choice. A simple, classic, long two-piece swimsuit, shorter yet far more decent and modest than my Indian one.

I love my chemo treat. I feel good in it. I’m motivated to swim almost daily. Sadly poor Indian Speedo is now relegated to the wardrobe and feeling redundant.

And as for “Things will never be the same again”? Well, that   a whole new train of thought for another post……………….

The mysterious port – an ingenious, intravenous Youtube?  (This really grossed me out so be warned).

I still can’t get my head round the “port”, or how it works. This is the magic device, inserted surgically, which means that the chemo does not have to be administered through a vein in your arm every time. For those of us who have a high number of chemo cycles, it saves these veins and a lot of pain and discomfort.

Before the operation, Doctor W kindly drew a little diagram showing what it looks like and how it works when he described the procedure to me. I had visualised something with an external element, perhaps something like a tap, to which the chemo pipes high as would be attached. My stomach flipped when he mentioned skin growing over the port after it has been inserted – so how do they put a needle in???! Through the skin?! Heebie jeebie jitters! Then he drew a little tube which feeds into the vein, so that chemo goes straight into the bloodstream – straight into the jugular in fact! Now that’s pretty scary too!

I must admit that I still found it quite difficult to understand, but because it was grossing me out I preferred to remain in ignorance.

So after the operation, and when I finally plucked up courage to look, I was surprised to see that I had two incisions. One was around my collar bone area (also remember I’m not a medical expert so it might not be my collar bone) and had a kind of “bump”, a little bit like a protruding button on my neck! Then lower down, a longer incision.  I have now had this contraption for over two months and I still can’t work out how it all works.

I did look up a reference to the procedure from one of the discussion forums of one of the breast Cancer sites, which has a huge amount of gory detail about the port as well as some discussions on different experiences. The reference directed me to an amazing blog by a man who had had pancreatic cancer and had been brave enough to photograph and document the whole procedure of the port insertion. Sure enough he had the same incisions as I do, but it didn’t take me any further in my quest to understand how it worked. My inadequacy – not his explanation. I also found it difficult to concentrate on the procedure too much from his description because sadly, he had eventually lost his fight with cancer and I felt a sense of voyeurism in reading his selfless, frank and brave accounts of his illness. Selfishly, I have to confess that it also really spooked me – that’s the thing about a cancer diagnosis. No matter how good the odds are of a full recovery, they have just odds and you just don’t know which side of the probability line you will be on. So I ran away (virtually speaking, of course) from that site is feeling guilty and reminded of my own mortality. And not really any the wiser about the port.

As the port had not been used for the first chemo, I approached chemo 2 with a sense of fear combined with curiosity. So how would the port be used? Would it hurt? Of course it would !! And would it feel any different having chemo infused directly into the jugular as opposed to a vein in my arm? I had a horror that the chemo would be stronger and even lethal going straight into the jugular.

So I was a bit of a wreck when I turned up for chemo 2. To add to my anxieties, I was unsure of the procedure for the session – I had been an inpatient for all chemo 1 and the oncology staff had just come to get me when it was time.

I started off at Counter No 2 and waved my appointment slip, thinking they might just send me off to the oncology ward on floor five. Or, even better, tell me to go home!! But no, the slip disappeared and I was told to sit and wait. Stomach churning and hands shaking, I waited. One of the nurses took me for weight and blood pressure check as usual outpatient procedure. A while after, one of the oncology nurses with what looked like a picnic basket and she took me on to another room. She opened her picnic basket, and took out all sorts of goodies including vials ready for blood and other creams and potions. She took blood and then had a look at the port area. When she pressed it, it felt tender (it still feels tender) so she slathered on some magic numbing cream. But the weird thing was that she didn’t go near the button area on my neck but covered the other incision area. I tried to say that I thought that the port was the button but we didn’t understand each of her so we remained in confusion. I was returned to the waiting area, for it to be analysed and to wait for Dr W2 to make his grand entrance.

Sure enough, before long I heard him and then saw him. All too soon it was my turn to be called in to see him. He did the usual checks and told me that the blood tests show that my kidney and liver functions as well as blood counts were all okay – so chemo 2 would go ahead. Oh no! Oh good! Because of the level of nausea I had had, he prescribed a new med for the groundhog days. And seeing how anxious I was, he also prescribed a magic blue pill to make things less scary! Phew!

Back I went to the waiting area. Before long a porter came to escort me up to the oncology ward on the fifth floor. I just don’t know how I can follow meekly when I so badly want to run away.

I was shown to my room and the oncology nurse came in with the anti nausea pre-med and the magic blue pill. I still had no idea what would happen with the port and this more than anything else we made me extremely nervous. The nurse came back with her clanky trolley and started to prepare me for chemo. She swabbed away the numbing cream, pressing on the area which I announced was still sore! What a coward!  I also asked how long the magic pill to work because I still felt scared. Bless her, she said that she would come back shortly once it had started to take effect. So did I feel relieved? No! I felt disappointed in myself for being such a scaredy, and moreover still terrified because after more than two hours at the hospital, the procedure hadn’t even started yet. I had visions of them having to delay the use of the port again and use a vein in the arm – and half of me hoped for this as it seemed less gory. The other half knew that it meant putting in another IV line (which hurts) and would not solve the mystery of the port.

The nurse returned before long and started to prep me.  This is because as far as sterilising the area and placing green surgical gauze around my upper chest – all very scary. Then she prepared the needle thing (which I couldn’t see because I was looking in the opposite direction!) Gently she then instructed me what to do so that she could “insert the needle”.

” Breathe in very deeply,” she told me ” and when I say stop, hold breath and I will insert the needle”.

So I breathed in a super yoga deep breath, held it when she told me to, she pressed firmly and hey presto it was in!! It really was! Now it could all start.

The first step of chemo using the port is to draw blood to make sure that port is working correctly and properly connected to the vein. She showed me the blood and then the saline was hooked up. As in chemo one, a series of anti-side-effect meds was administered first, including the red ants one. This was followed by the saline and then the first chemo, the bright red one. Then came more saline and the next clear chemo, all as before. In the space of a couple of hours chemo 2 was all done.

Removing the needle was similar to the insertion process – another deep breath, hold and then it was out. The nurse showed me the needle – shorter than I had imagined and attached to a flat device so that is why it didn’t stick out. However I was still none the wiser about how the port works and in particular, what on earth the button is for!

At my next appointment with Doctor W2 I joked that I had been unable to download music using my port. He roared with laughter and said he would have to insert an iPod chip in my brain for that to work. Serves me right for quipping.

Now after four chemo sessions, I remain largely ignorant of my own Youtube port and how it functions. I actually think that once this business is all over and I eventually have it removed I will then try and understand it – it just freaks me out too much while the thing is still resident in my body.  It is such an amazing device though, I still reckon that there is some way of using it to download music and films.

All Change

Today is Saturday 23 January, 20 days after chemo 4 and the plan was to return to Bangkok. And that means that tomorrow should have been Scary Sunday, with my appointment with Dr W2 followed by chemo 5.

However, that’s all changed now.   On Thursday I had my blood counts checked and took the complicated long list of results to my Dr here in Yangon. She checked these against the minimums set by Dr W2 – and there it was in black and white, I was clearly under the minimum.  Insufficient neutrophils as well as low pretty much everything else.  The strange thing is that I feel really quite well, apart from tiredness. Well enough to swim 25 – 30 lengths of a 20 metre pool 5 times a week!

The fact that my counts have always been satisfactory up to now and that I have not had any delays to the first 4 chemos made me think that I would not have any difficulties with my counts so it came as quite a blow. I also felt really disappointed in myself, as if I am doing something wrong. The Dr reassured me that this is a normal response to chemo and it takes time for the body to replenish after the chemo does its destructive work on cancer and other cells. I am doing all the right things – eating very carefully and active within my limits.

So the mixed reactions swung immediately into action.  Deep disappointment that my treatment is delayed. An acknowledgement that with each treatment pulling me down a bit further the rest will in all likelihood be delayed too as my body takes a bit more time to recover each time. This means that the “finish date” which I had indelibly marked in my mind of 28 March for my final chemo has shifted and will in all likelihood shift again. This will mean a delay to the start of radiation which will start after the chemo has finished. This is accompanied by a sense of frustration that despite being proactive and doing my utmost to aid my recovery, I am not in charge of my own neutrophils!!

On the other hand though, the thought of a reprieve and having a relaxing and pleasant Sunday instead of Scary Sunday cannot fail to appeal. Likewise, the thought of another week at home, eating breakfast in the garden as the sun warms the day, enjoying the peace and tranquillity of the environment, eating fresh and healthy food, being close to friends and colleagues, and just being home is very attractive.

The plan now is that we repeat the blood test this week and see how well or not I am “reconstructing”. Irrespective of the results we will travel to Bangkok ready for another Scary Sunday as Dr W2 will see me then and will review how and when the next treatment happens and if there needs to be any other intervention, such as boosters or meds.

The light at the end of the treatment tunnel is still there, just a little bit further away and every day continues to take me a bit nearer. And I am thankful that the coming days of recuperation will be here at home.

The twelve days of chemo

On the first day of chemo these delights came to me
The most scary, bright pink pee
 
On the second day of chemo these delights came to me
Total exhaustion and some more scary bright pink pee
 
On the third day of chemo, these delights came to me
A very queasy tum, total exhaustion,
but no more funny pink pee
 
On the fourth day of chemo, these delights came to me
Very fuzzy head, one queasy tum, total exhaustion,
but no more funny pink pee
 
On the fifth day of chemo, these delights came to me
A foul tasting mouth
very fuzzy head, queasy tum, total exhaustion,
but no more funny pink pee
 
On the sixth day of chemo, these delights came to me
Dreadful constipation,
foul tasting mouth
very fuzzy head, queasy tum, total exhaustion,
but no more funny pink pee
 
On the seventh day of chemo, these delights came to me
Clumps of hair a falling, dreadful constipation,
foul tasting mouth
very fuzzy head, queasy tum, total exhaustion,
but no more funny pink pee
 
On the eighth day of chemo, these delights came to me
Skin nerves a jangling, clumps of hair a falling, dreadful
constipation,
foul tasting mouth
very fuzzy head, queasy tum, total exhaustion,
but no more funny pink pee
 
On the ninth day of chemo, these delights came to me
Needless tears a falling, skin nerves a jangling, clumps of hair a
falling, dreadful constipation,
foul tasting mouth,
very fuzzy head, queasy tum, total exhaustion,
but no more funny pink pee
 
On the tenth day of chemo, these delights came to me
Clumsiness and stumbling, needless tears a falling, skin nerves a
jangling, clumps of hair a falling, dreadful constipation,
foul tasting mouth,
very fuzzy head, queasy tum, total exhaustion,
but no more funny pink pee
 
On the eleventh day of chemo, these delights came to me
Grumpy bad temper, clumsiness and stumbling, needless tears a falling,
skin nerves a jangling, clumps of hair a falling, dreadful
constipation,
foul tasting mouth,
very fuzzy head, queasy tum, total
exhaustion,
but no more funny pink pee
 
On the twelfth day of chemo, these delights came to me
Blood counts a dropping, grumpy bad temper, clumsiness and stumbling,
needless tears a falling, skin nerves a jangling, clumps of hair a
falling, dreadful constipation,
foul tasting mouth,
very fuzzy head, queasy tum, total exhaustion,
but no more funny pink pee

Foiled!

What happened to the promised update then? I had posted on Monday

morning, just before leaving Bangkok, homeward bound and full of

anticipation.

The Groundhog fog was clearing and while the taste buds were still

sabotaging my appetite and slowing a return to feeling healthy, the

thought of being home was definitely making me feel optimistic.

Our journey back was uneventful and before too long we were out of the

airport and heading home. It is just so good to be back – although

this time I did feel a good bit more tired. I know that the chemo is

pulling me down a bit further each time.

In the evening, I plugged in the laptop, sorted the dialup and got

online after a few attempts. But then horror of horrors – no access

to the blog! Luckily I can still email but there are a number of

sites I can no longer access – and my own blog is one of them! So I

am attempting to post by proxy for the coming days…………let’s see how it

works!