A Week Is A Long Time In...

The erratic nature of the side effects of cancer treatment is very frustrating. I decided that this time round, as well as having the infusion over an hour rather than 30 minutes, I would take the 5 or so days after treatment, very, very easy. About 3 days after treatment I actually felt quite well and ate very well. 4 days after I felt nauseous and threw up, or rather possetted, barely a tablespoon. For the next few days I felt constantly un-hungry and slightly nauseous with the strange possetting. I did manage to eat 3 "meals" a day. As the week progressed I felt no better. I was due to go out for dinner with some old school friends on the Friday (8 days after treatment) and I was fairly convinced that although I would go, I would probably not have anything to eat. I'm such a cheap date.

Friday dawned and I had breakfast (which I have rarely if ever had a problem eating) and then just before lunch time, it was as if a switch went on and I was ravenous. I cooked my lunch, which was no mean feat as it required standing up for quite a while. That evening I had a very lovely 3 course meal with much reminiscing. The following day I could barely finish my lunch and on Sunday I ate very little in the way of lunch or supper.

The general feeling of grottiness continued for the next few days together with the usual overwhelming fatigue and as I write this (two weeks after treatment) I feel really quite good. My appetite is as normal as it's likely to be and my fatigue is not too bad. However, I am fully aware that tomorrow might be completely different.

This unpredictability makes living really rather problematical. Whilst I felt OK last Friday, (day 8), it doesn't necessarily mean that 8 days after my next treatment I'll feel OK. As you can appreciate this means that making any sort of plan for a social life very difficult. I guess that's probably what they mean by living your life one day at a time.

It seems that I spend a lot of my time on this blog moaning about my lot. Which is not really my intention. I like to think that I am more commenting on the delights of cancer and its treatment.

Fatigue

I have now had my 3rd round of Kadcyla. The first is given over 90 minutes to ensure that there is no adverse reaction. The doses thereafter are given over 30 minutes. The last 3 weeks, with the odd exception I have been beyond knackered. So I asked the great oracle (which is the internet and facebook) and there is a theory that giving it over 60 rather than 30 minutes reduces the level of fatigue. So this is what I asked for and got.

I decided that this time round I would do as little as possible immediately after treatment. This was quite easy as I am knackered. In fact day 3 I spent most of the day in bed asleep. The annoying thing is, that apart from the extreme fatigue, I actually feel quite good, no aches or pains. There is no way of describing how completely debilitating fatigue from cancer is. It is amazing how many people say to me, yes I'm very tired too. I know what they mean and I long to be that tired.

There is an open letter from a breast care nurse who unfortunately was diagnosed with breast cancer earlier this year. It is a long list of apologies, the most telling of which is, " I didn't get that when you said you were tired, you really meant so much more. Sure there are words like exhaustion and extreme fatigue - but there should really be a separate word just for cancer patients, because it's crippling. Really. Some days you really wondered how you'd trudge forward. I'm sorry. I didn't get it."

I am hoping that this initial complete collapse of my energy will improve. There is always the steroid route, but then although it does boost energy levels and appetite, it is a short term fix and furthermore, there is a huge crash when the steroids are stopped.

Anyone who tells me that a little bit of exercise helps with fatigue will be best advised to move out of my immediate vicinity, as I will summon up what very little energy I have and probably thump them,

Shrinkage, Yoga and False Sense of Security

Quite a few people over the last few months have commented upon my height or rather lack of it. I have also noticed that things I used to reach with ease are now a little further away. When I went for my usual blood test and pre-assessment I asked them to measure me. The upshot is I have shrunk by half an inch, which when you are only 5 foot 2 inches, is quite a lot. However, about 9 years ago I started doing "old lady" yoga and over the first year I grew by half an inch. So I am of the opinion that  I haven't shrunk so much as slouched, as I have done little or no exercise, yoga or otherwise, for about a year.

As it happens I have resumed my "old lady" yoga, since I now feel that my body is stable enough and not so painful. I have done two sessions. The first one was hard, but I was very gentle and listened when my muscles said "Nope, not doing that." The second session, which was 5 days after treatment was much, much harder, but I did complete both sessions and they were totally worth it. Although, I suspect that I enjoy the relaxation part much, much more than before. I am hoping that yoga will perform its heightening miracle again.

The drug I am on, as I have said before, is Kadcyla. Its side effects are minimal. The main one being constipation which I find easier to cope with than the alternative. The biggest problem with these minimal side effects is that they do lull me into a false sense of security. I had treatment on Thursday and was out of the unit before lunch, which is unheard of. I had a snooze that afternoon. On Friday I popped to the shops and the bank, in the car and again had a snooze in the afternoon. Saturday I did a bit of shopping, had a snooze in the afternoon and then went out for an early dinner. Sunday, I did nothing much and had yet another afternoon snooze. Monday, I went to work, left early-ish and had a snooze. Tuesday I did yoga in the morning, a spot of shopping and a snooze in the afternoon. Wednesday, I got up as per usual and felt bleugh. I was supposed to have my usual weekly lunch with my mum, but thought better of it and spent the day in bed. I slept fitfully, had a spot of lunch and slept some more. When I finally got up I felt much better. I'm not sure if it was the cumulative effect of doing stuff in the days immediately after treatment, or the cummulative effect of the last 8 months of treatment. Either way, my day in bed was clearly what I needed. What I will do after my next treatment is...nothing at all.

Kadcyla, The Joys of Constipation and Jaw Pain

I will deal with these in reverse order.

I have had some pain in my jaw, principally the left hand side, on and off for most of my treatment. As I have probably said, it is never really a good idea to read all the side effects of the drugs that are given as it is at best depressing and at worst incredibly alarming. The bone strengthener that I am given, Zometa, has a bizarre side effect of destroying the jaw bone. Whilst enjoying my French sojourn I finally worked out why my jaw was hurting or at least what was happening. Basically my lower jaw was gradually creeping forward meaning that my back teeth weren't coming together and my front teeth were coming together in a very annoying manner. Yawning was painful and I would get terrible cramping around my lower left jaw. Although, with a little bit of massaging, this alleviated the pain and my jaw kind of went back to where it should be. At my pre-assessment I mentioned all of this to the nurse and she took note. On the day of my treatment I mentioned it again and much consulting of the consultant took place. The upshot was it was unlikely to be osteonecrosis more likely an increase of calcium. It was decided not to give me Zometa this time round. I have had it every 3 weeks for about 11 rounds. Apparently, it should be given every 4 weeks, so I am well covered. Suffice it to say that even with the jaw pain my ability to talk and eat was not impaired in any way. No surprise there then! Well a week on and the pain has completely gone and my jaw is back to normal. As to whether I will continue with Zometa in the future I don't know.

My new drug, Kadcyla, has the most delightful side effect of constipation. Not only is this easier to spell than diarrhoea, it also means that for the first time in about 8 months I do not have to plan my life around where the nearest loo is. Also, I didn't realise how much of my time has been spent sitting on the loo. I have so much free time and my nights are far less disturbed. The judicious use of psyllium husks has made everything trot along nicely.

A week ago I had my first round of Kadcyla. My appointment was for 9.30am. Surprise, surprise my drugs didn't come up from the pharmacy until 11am. I have absolutely no idea what the hospital pharmacy do or how they are organised, or if they are organised. They must know what drugs are needed and when. I appreciate that most of the drugs used in the chemotherapy unit cannot be made up too far in advance as they have a very limited shelf life, but what is the point of having a 9.30am appointment if nothing happens for and hour and a half! The nurse decided once it had arrived that perhaps, given half of what I was about to be given is Herceptin, to which I am allergic, I should be given my usual premeds of Piriton and hydrocortisone, which he could have given me in the intervening 90 minutes. The first dose has to be given over 90 minutes and then I have to sit for an hour or so to see if anything interesting happens. Well nothing interesting happened so I went home.

The following few days I suffered from a slight headache which got progressively worse as the day wore on and my teeth and jaw ached as well. Both of these were easily dealt with by taking my preferred painkiller of co-codamol. The fatigue I had is totally different from previously as it responds well to an afternoon snooze. Overall, Kadcyla seems eminently do-able. I can only hope that the chemicals are doing their stuff and killing the cancer cells.

The Best and The Worst of The NHS

A little under a week after my treatment, on Tuesday night I got a pain in my right hand side. Clearly to me this meant that my liver mets were playing up. I was due to go to France that Friday morning, so I phoned the MacMillan people and asked what I should do as the pain wasn't getting any better and I didn't really want to spend my French holiday sampling the delights of the French health care system.

I had two options, go to A&E or go to the drop in breast clinic on Thursday morning. I opted for the former as Thursday seemed a little too close to departure and I wasn't sure that I could survive another day of pain.

I arrived at about 5.40pm on Wednesday. It was quite busy but saying the magic words "incurable cancer" had the desired effect and I was called in within a few minutes. I explained everything about my cancer and the pain. I had my blood pressure taken and a cannula fitted from which they took many, many blood samples. I was taken to a room and hopped up on the gurney. As a matter of course I was given antibiotics, standard protocol for cancer patients in A&E.

A very lovely A&E doctor came and saw me, took notes and generally assessed me. She then decided that a surgical consult was in order in case it was something like gallstones. I did explain that I had had a full CT scan within the last 3 weeks, but this didn't seem to make any difference. I was sent of for a chest and abdomen X-ray, which revealed nothing unusual. Once the surgical chap came he decided that an ultrasound was in order. He would order one for the following morning. Ultrasound is not 24/7, they work normal office hours. The time by now is past mid-night. I have done an awful lot of waiting around. I next have to wait for the medical doctor to come and see me. There are 4 of them on duty, but I keep being bumped down the queue by more urgent cases, which is fair enough. In retrospect what I should have done is discharged myself at about 2am, but I didn't. Trying to get information was nigh on impossible, No-one knew what was happening. The ultrasound couldn't be booked until the next morning. The ultrasound had been booked for 8am. All very frustrating and confusing.

I should point out at this juncture that every individual was absolutely lovely and I cannot fault the care they gave me.

By 6am I had had more than enough and decided that I was going to discharge myself, go home, have a quick kip and return for my 8am ultrasound. Therein lies the problem, in order to do this you need to see a medical doctor, which again takes time. They were reluctant to let me go as they wanted me to stay put until 8am. I did escape, having signed a disclaimer.

I returned at 8am to the surgical ward and sit and wait, once again my blood pressure was taken, which as you can probably imagine, was a little on the high side. A nurse took pity on me and found me a bed so I could lie down and have a snooze.

I am then told that I cannot have a scan until the head surgeon chap has done rounds. It is now well past 10am. He arrives I re-tell my story again, mentioning the recent CT scan. His pronouncement was a scan was unnecessary and it was just progression of disease and I could go home!

As it happens the MacMillan nurse phoned and said that it was probably an inflammation of my liver capsule which would almost certainly be helped by taking some steroid. So I popped down to the drop in breast clinic, collect the prescription and go on my merry way.

My issue with this whole incident is that I was effectively bed blocking for most of the night. The medical people, with the exception of the head surgeon, seem to hear neighing, smell horse manure and assume it's a zebra. The bureaucracy is beyond belief and most of the time the right hand does not know what the left hand is doing.

As I have said I cannot fault the individual staff who were all unfailingly professional, patient and caring.

As a side note for Jeremy Hunt, there is very little point in making the junior doctors do 24/7 (which as far as I can see they do already), if the rest of the hospital is working office hours.

Bad News, Bad News, Good News, Good News

Let me deal with the bad news first. The cancer has spread. The little "blips" that could be seen on my lungs last time turn out not to be caused by radiotherapy, but cancer. Strangely although I am a little breathless I am not any more breathless than usual. The tumours are also in my liver.

Good news the bone tumours are stable, but this is to be expected because bone mets are slow to progress. Once again my oncologist the master of understatement said this was disappointing. I have to admit that I was expecting the worst so it wasn't too much of a shock. Although my oncologist seems to think that I will fall to bits once the news has sunk in. It has and I haven't. Telling my children was hard but they fortunately have the same fatalistic attitude of their parents. Shit happens, deal with it. As I have pointed out on numerous occasions hundreds of people leave their homes every morning never to return.

More good news I have once again won the postcode lottery. I will be treated with Kadcyla. This is a combination of a monoclonal and chemotherapy drug. Basically the monoclonal attacks the cancer cell receptors and effectively injects the chemotherapy into the drug. This means that the chemotherapy side effects are less severe so I am hopeful that apart from the obligatory fatigue and possible nausea I won't lose my hair, although I'm not counting my chickens or my hair yet.

Epiphany, Alarm Clocks and Unpredictability

For a change I thought I'd start at the end.

I had my treatment a little under a fortnight ago. Two days afterwards I was at a BBQ and I was on top form, not too achy, good appetite and not fatigued. It's amazing how pleased people were to see me, which was very nice. Two days later I felt as though I had been hit by a freight train and it has taken over a week to start to feel even vaguely normal again. The treatment before this one saw me on the 5th day in bed or on the loo. I'll leave the details to your imagination. The following day I was fine.

When I was on chemotherapy there was a total predictability about what state I would be in on any particular day. Day 3 in bed with the world's most painful knees. Days 4 to 11 general pain and achiness that gradually abated. Days 12 to 21 almost normal. This time round there is no such certainty which does make planning rather difficult. I hope that there will be some stability and certainty sooner rather than later.

My epiphany is related to my alarm clock. We have all woken up in the dark before our alarm clock has gone off. At this point we have a choice to either turn over and go back to sleep in the blissful ignorance of not knowing exactly how long it is until the dreaded alarm goes off, which in my opinion makes getting back to sleep easier. Or we can look at the clock and see exactly how long we have until the dreaded alarm clock goes off which then makes it a race to get to sleep as quickly as possible. It this scenario ignorance is definitely bliss. What has this to do with my current condition I hear you ask. Well, we're all going to die and most of us don't know when or how. Those of you who have not been told that they have incurable cancer have woken up before the alarm and not looked to see what time it is. I have seen the time and am desperately trying to get back to sleep before the alarm goes off.