Feeling Philosophical

It's that time of year for reflection. Another year over and what have you done, to quote John Lennon.

2016 has been one hell of year for any number of reasons.

Firstly I managed to stay alive which is no mean feat.

As some of you are aware I am on a facebook group for secondary breast cancer patients. A lot of my "friends" are wondering if this will be their last Christmas. It's not something that has occurred to me. It could be anyone's last Christmas. Some of them are making memory boxes and books for their children. I am not for two reasons, firstly they would be incredibly tear stained and secondly my children are in their late teens and early twenties so have their memories, I also tell them ad nauseum how much I love them and also they are fully aware of my wit and wisdom on all and every subject.

I also wonder whether we who have been told our horizon is a lot closer than we had initially anticipated are in a better position than the rest of the population. We know our time is limited, we can get our affairs in order, we can appreciate what we have, not that others don't do this. The talk of memory boxes and the like makes me think of Jo Cox, the MP who was murdered, with 2 young children. She had no will and had no time to make memory boxes.

The trouble with being told that your time is very limited is that this fact occupies near every waking moment. This is over and above the joys of dealing with treatment and its side effects. It is very hard to live a "normal" life. At the moment, apart from the overwhelming fatigue, I am actually feeling quite well, I am the epitome of the spirit is willing but the flesh is weak.

I am hoping that 2017 proves to be a better year for all sorts of reasons and presuming that the proverbial bus doesn't get me or you I hope to see many more Christmases.

Dehydration

I drink a lot, in comparison with most people. However much I drink it is clearly not nearly enough.

I know that Kadcyla is very dehydrating. Many of the side effects, headache, constipation, dry, cracked hands and feet, can all be attributed to dehydration. I seem to have a near permanent dry mouth, which is why I drink a lot of water. When I went out for dinner a couple of weeks ago, I must have drunk about a litre and a half of water, when I got home much later that evening, having not availed myself of the restaurant facilities, I went to the loo and probably only peed out about a teacupful. Clearly I am suffering from chronic dehydration.

I went for my regular blood test prior to treatment and knowing that I was probably a bit dehydrated, I made a special effort to drink even more. The first nurse, (who now is a member of the "she could stick a Bic biro in my vein and I wouldn't notice" club), made two attempts, found lovely veins but no blood. The protocol in the chemo unit is the nurse gets two attempts and then has to call a colleague for further attempts. Not sure what happens if the second nurse has to have two attempts as, fortunately this has never happened. The second nurse accesses the vein near the base of my thumb, which is possibly my least favourite site, with little or no pain. She gets enough blood and then removes the needle. It was without doubt the most painful needle removal ever. In fact it is the only time that a needle removal has hurt. I can only describe it as a sort of bruise like feeling. Furthermore, the pain continued for about another 15 minutes.

I mention this to the great oracle that is Facebook and the general consensus is that the pain is down to being dehydrated. I realise that I am going to have to up my fluid intake by industrial proportions.

The next day is treatment day. Before I leave the house I have probably drunk about  pints of water and fruit tea. I consume a further couple of pints of water and fruit juice whilst being treated. When I get home I continue to drink more and more water. It is only by about 9pm that my mouth stops feeling dry. Hooray! There is, naturally, a slight downside to all this drinking, many nocturnal visits to the loo.

So I will continue to drink a couple of lakefuls of water and see what happens next time I go for my blood test.

A Day Is A Long Time In...

I have discovered that there is no predicting anything to do with cancer.

I wrote this on another site a cople of days ago, but I think it succinctly sums up cancer.

Oh how I love this cancermalarkey. It's so excitng.

Yesterday I got up had a shower and was full of pep, vigour and vim, (it's all relative). I did a spot of shopping, had coffee with a friend and an afternoon snooze because I could. Felt very positive and that this is doable.

Today I woke up dragged my weary carass out of bed, went to work, lasted to just before lunchtime before I had to come home and collapse into bed. Think I might plan my funeral.

Can't wait to see what joys await me tomorrow.

As it happens tomorrow brought me the joy of having enough energy to travel to see some relations which was lovely. The following day I was completely pooped. Putting the washing out on the airer required a 20 minute lie down afterwards.

Ah well, worse things happen at sea.

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.