Kadcyla And Transfusions

Kadcyla is the miracle drug that is keeping me and many, many other women alive. It is currently under review by NICE as to whether it is cost effective and they are playing a game of brinkmanship with Roche, who manufacture it, about the price. It is expensive, about £70-90,000 per year. A cost which I'm absolutely certain the relations and friends of those women would say is worth every penny.

What NICE is proposing is to stop new patients from having it, whilst those already on it will continue. I'm fairly sure that eventually NICE will also stop those already on Kadcyla from receiving it. To this end there is a petition which I would be most grateful if you dear reader would sign. The link is here.

Kadcyla Petition

Thank you.

On a more personal level I had my fifth round of the lovely, expensive Kadcyla and this was in spite of the fact that my iron levels are very low. This explains why I have been quite so knackered. So what to do? Well the short answer is a blood transfusion, which will be happening next week. Over the years I have donated over 50 pints of blood so it will be a completely new experience to be on the receiving end. I am told that it takes a minimum of 3 hours to give the transfusion, according to my brother who seems to know about these things, it cannot be given any quicker as this is likely to damage the blood. I am reliably informed by those who have had a transfusion for low iron levels, I will feel like a whole new woman, which I am very much looking forward to. I will also feel like Mo Farrah although I'm not entirely certain that I'll be running any great distance anytime soon.

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.

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.

Getting Used To It

My last post was, to say the least, a little on the miserable side. Well dear reader you will be pleased to hear that I am in a much happier frame of mind.

Nothing much has occurred to promote this mood I think it is just the swings and roundabouts of having cancer and its treatment.

As you can imagine death preoccupies my mind a lot and I ponder on whether part of what makes my current condition so irritating is the fact that I know I will probably die prematurely (although by prematurely I'm aiming for my mid 70s rather than my family average of mid 80s). Many hundreds of people get up every morning and never make it home. Is ignorance bliss in this instance?

I had my 10th treatment this week, which not only went without incident but also went extremely swiftly. I went on my own because my lovely husband was away on business in Amsterdam. At least this is what he told me! I did consider taking someone with me, but decided against it as it is mind numbingly boring and I would feel slightly obliged to "entertain" the person who came with me. This leads to the obvious conclusion that I don't mind boring the pants off my husband. Whilst this is partially true, he has signed up for the in sickness and health bit, so it goes with the job. Also we're very good at sitting in companionable silence and he doesn't feel the need to ensure that I am all right all the time, so he disappears off from time to time, usually to talk to work.

My general aches and pains are now very much a part of my life. As I said to the nurse during assessment, I feel like a fish and chip shop cod, lightly battered.

Whilst I would obviously rather not be doing this, I am finding that I can cope with the side effects quite well. So my new normal isn't really all that bad.

General Gripes and Major Moans

Firstly the caveat.

These are my opinions, I am fully aware that not everyone shares my opinions. Further, I am also aware that people find dealing with people with cancer as difficult as dealing with the bereaved. They hope that they are saying the "right" thing.

I am not brave, I have incurable cancer. I am not fighting anything, I have incurable cancer. I do not necessarily have a positive attitude, I have incurable cancer.

I go to the hospital and am treated with the best that medical science and the NHS can provide. I am an unwilling, but grateful participant in the joys that are cancer treatment.

I do not need to be wished good luck when I go for the innumerable scans. I need good science. If anything it is the technicians who need the luck in finding my last remaining usable vein.

I also do not need to be wished good luck when I see the oncologist for the results of my scans. It's way too late by then.

I realise that all of the above makes me seem like an ungrateful curmudgeon and in some respects I am. It's not that I am ungrateful for people's good wishes, I just get a little fed up with being told how brave I am, that I will fight the good fight, that I will get better, in spite of the fact that I have incurable cancer.

I think what I would like is for people to realise that platitudes, for that is what they are, can be very annoying. What I am going through is a (hopefully) long, hard slog. It is tedious, and mentally and physically draining. The rest of my life will be lived in 3 weekly segments, punctuated with 4 monthly scans. I hope for the best and prepare for the worst.

I am more than happy to talk to you about what I am going through. If you ask me how I am, I will tell you in glorious technicoloured detail.

If you want to know what the "right" thing is to say, talk to me like a normal human being, not a cancer victim.

My general attitude to life is, shit happens, deal with it.

Counting My Blessings

I belong to a couple of forums for those unfortunate enough to have secondary breast cancer. They are thought provoking places to visit.

They have interesting information about our condition and the various treatments. A place to compare and contrast.

The more I read, the more I realise that under the circumstances I'm not doing too badly. As I have said before I don't especially like playing the Pollyanna "Glad Game", but at times it's hard not count my blessings.

Firstly I was not fobbed off by my GP when I went about my back pain. Many are with disastrous results. This meant that the spread of the cancer is not as bad as it could have been. The medical staff at my hospital are without exception brilliant, something that I would expect at all hospitals, but I have discovered this is not necessarily always the case. The nurses and technicians listen when I point out where my last surviving vein is, rather than disregarding my experience and ferreting about for another unusable one. My oncologist treats me and my husband as the intelligent human beings that we are. This is also not always the case, indeed some oncologists don't even look at their patients when they are talking to them, let alone keep them fully informed. I have also "won" the postcode lottery as the treatment I am receiving is not available everywhere. All of this before I have even got on to the joys of the side effects. It is difficult to separate out what is caused by the treatment and what is caused by the cancer but it really doesn't matter when you are being afflicted by them. I have not had any nausea, my delightfully overactive bowels, which is a very common side effect, have eased up, my general aches and pains are easily controlled with painkillers, and whilst I am by no stretch of the imagination sailing through this, I can see that I am having a much easier time of it than most.

My friends and relations have been and are being lovely. By and large they are treating me as they always have, rather than with the sympathetic head tilt "how are you?", which makes my life delightfully ordinary. So far none of them has got bored with the fact that I am not dying. If this sounds surprising then it is because there are people out there who assume that because their friend who has incurable cancer is still around then they must be faking it. Clearly some people just aren't dying quickly enough!

My Not So Brief History Of Fatigue

Those of you who have being paying attention will know that I work part-time. In the world of cancer and fatigue this is a good thing as will become apparent.

Fatigue is not the same as tiredness or sleepiness. It can creep up on you slowly or waylay you like a lightning strike. The former is slightly easier to deal with as it gives you a little (a very little) time to find somewhere to sit or lie down. The latter is nothing short of debilitating. With this fatigue there is such a thing as not sitting down enough. I have often been sitting at the dining table and had to move to the sofa as sitting in an upright chair is simply too much effort.

In general I try to have an afternoon snooze as often as I can. Indeed I quite often plan my week around my afternoon naps. This is not self-indulgent but absolutely necessary. I have two full days a week in the office and have on occasion left a bit early as I have been completely knackered. Fortunately I have a very understanding boss, who clearly realises on those occasions that if I were to stay for the full day any work that I produce would be less than my usual brilliant output. But by and large, especially since I have stopped having the chemotherapy, I manage to complete my work days.

My other days are spent doing life. Hospital appointments, seeing my mother, having a social and family life, plumber visits, and so on. Some of these are relatively immovable, such as my lunch with my mother, although on those days I know I will get a snooze. The others I have to try to schedule for mid-morning so that I have to energy to deal with them. Evening events are do-able as long as I haven't had a busy day. Again it is all a matter of planning.

This week I went to visit a dear friend in the wilds of "up north" although technically I think she is in the Midlands, but it's north of Watford, so it's "up north". I had a lovely time catching up, sitting around chatting, eating, drinking and playing with her 3 new kittens. The drive there and back was not too stressful and was a little over 90 minutes each way and I stopped of briefly both there and back at the motorway services. I left at about 9am and got home at about 6pm. I felt fine. The following day I was in the office and apart from a slight post lunch slump I was OK. The day after that, I got up went shopping, had breakfast and then at about 10.30am I was beyond shattered. I decided that the only option was to go back to bed. Even sitting on the sofa was not restful enough. I slept soundly until lunchtime, got up had lunch, and went back for more snoozing. Only after my second snooze did I feel at all fine. I can only deduce that two days on the trot with no snoozing is likely to catch up with me big time.

It is obvious to me that were I to have a full-time job, I would have to stop working or at the very least reduce my hours considerably as I simply would not be able to cope. Work is necessary both from a financial perspective and a self-worth point of view. Having a part-time job not only gives my life some structure it also keeps me in the "real" world, away from a life of hospital visits, sympathetic looks, and being all-consumed by cancer.

Cancer, its associated treatment and its side effects are the enemy of spontaneity. Which is fine if, like me you are not inherently spontaneous, but even for me the rigours of planning my life can be a bit wearing.

Hair It Comes and The Joy Of Forums

I had my 8th round of treatment last week, this is the second one without chemotherapy. Fortunately the nurse managed to get blood out of my portacath which was a huge relief. The treatment went by quite quickly even though there was the obligatory waiting for the drugs to come up to the unit.

The side effects appear to be virtually non-existent. The peripheral neuropathy is slowly disappearing, my overactive bowels are getting less overactive, my fatigue is its usual self in that it comes and goes without warning and most importantly my hair is growing back. I first noticed my eyebrows, which I initially thought were blackheads, I then worried that they were growing back jet black, thoughts of trying to carry off the Alistair Darling look crossed my mind. However, I am pleased to see that I will probably not have to put up with black eyebrows to go with my white hair.

I have joined both a secondary breast cancer forum and facebook group. They are handy for answering those questions which you don't want or need to bother the medical profession. Also the medical profession don't have the first hand experience of the joys that are cancer treatment.

What I have noticed is that I am currently having a relatively easy time with respect to side effects of the treatment and the effects of the cancer. Further I have definitely got the best doctors, nurses and hospital. So many women are dismissed by their GPs, "it's arthritis, it's muscle strain, it's your age." The oncologists seem to be, at best, off-hand and unapproachable. So many women appear to be cast adrift by the hospital with no point of contact. Whilst I don't feel the need to see my oncologist any more often than I do already, which basically is to get results from scans, so about every months, I know that I can phone the MacMillan nurses at any time, which is a huge comfort. Also my GP, who sent me off for a bone scan when I saw him about the strange pain in my back, has said that they are there for me for anything and everything. That is I shouldn't put up with any problems, such as conjunctivitis or sore patches which don't heal quickly. Until I joined my forums I didn't think that this was unusual, I assumed that this is how it was for everyone. How wrong could I be.

Yet Another General Update

Not having the chemotherapy element has made a huge difference to my side effects. I did not have the excruciating pain in my knees. My immune system, I am presuming, has not been reduced, and finally, my bowels have been behaving a little better. Although I doubt that they will ever be back to normal.

On the subject of immune systems, I have pointed out before that having no immune system means that in the event of catching a cold there is no snot. Which is a huge bonus. Indeed over the last few weeks, in spite of the fact that I am the one with an incurable disease I was without doubt the healthiest member of my immediate family, as I was the one who caught the truly awful cold last, got over it quickest and didn't get through industrial quantities of tissues. Every cloud...

As far as other side effects go, I have recently been suffering from unbelievable fatigue. Previously I was fairly knackered during the first week or so. This time round the tiredness has descended during the third week. As a general rule, I do take things easy. My fatigue comes in two ways, either a general slow creeping up on me, or like a switch. If it's the latter I have to literally stop in my tracks. I work part-time and on occasion have to leave early so that I can go to bed. When I am not at work I make sure that I have an afternoon snooze, which helps with the fatigue. This time round nothing seems to really shift or help with my fatigue. Having said that, I do not find that I am mentally fatigued, which is a feature of my early onset tiredness. This time round it is just physical and the thought of doing anything strenuous overwhelms me. I can only hope that things improve before my next round of treatment in a few days.

Other Stuff And The New Normal

Since I last posted I have been to have my alternative therapy at the hospice. It consisted of a massage to my back, which was very lovely, my knees, which had some very interesting knots in the muscles and my numb feet, which did alleviate the numbness. Apparently I get 6 free treatments but I'm not sure what happens after that. Given that currently I cannot really go every week due to my side effects, I suspect it will be quite a long time before I get to use up my six visits.

My peripheral neuropathy ebbs and flows and is more irksome than debilitating. Given that it is a side effect of the docetaxel (the chemotherapy element) and I am not having that now, I am hopeful that this will get better. I am also hopeful that my hair will start to grow back.

Yesterday was my 7th treatment and the first without the chemotherapy element. Since I did not have the docetaxel, I did not have to take the numerous steroids before and after. I have now discovered that the side effect of the hot, very red, very itchy cheeks, which I and the medical profession attributed to herceptin, is actually attributable to the steroids. So I am delighted.

On many occasions I have waxed lyrical about the delights of the portacath. I have now discovered that all is not necessarily sweetness and light with it. At the beginning of each session the portacath is flushed with saline and then a syringe is connected and some blood is drawn out. Unfortunately this time no blood came. In spite of nearly an hour of flushing, anticoagulant, and general "fiddling about", (a technical medical term!), there was no blood. Stuff went in quite happily but nothing came out. The blockage, which I assume to be a bit like the hinged flap on the top of a juganaut's upright exhaust pipe is caused by fibrin, an insoluble protein formed during the clotting of blood, which forms a fibrous mesh that impedes the flow of blood. Clearly a portacath is a foreign body and as such the human body reacts to it. The nurses seemed unconcerned about the lack of blood coming out and I appear to have suffered no ill effects from it. Although I am a tad worried that there might be a stray blood clot waiting to get me.

Finally, I am frequently asked for how long I will be receiving treatment and my reply is "until I die". I am not being melodramatic or morbid, but truthful, this is my new normal. Every three weeks I will go to the hospital and receive herceptin and pertuzamab for as long as they keep the cancer in check. Once the cancer starts growing again then the wonders of medical science will find something else to give me and so on until all avenues are exhausted. I should point out that there are women who have been on herceptin and pertuzamab for a minimum of 2 years, which given the latter has only been available for a couple of years, gives me great hope. There is a price to be paid for this and that is how little free time I appear to have. Out of twenty one days and day and a half are taken up with blood tests and treatment. After that approximately ten days are devoted to side effects which tend to tie me to my home, (especially the loo!) which leaves me with less than half of my time in which I have to fit in going to work (good job I work part time and I have the world's most understanding boss), visits to my mother, visits from the plumber (the saga of the fixing of my shower would probably merit a blog all of its own), various other hospital appointments, a social life, (which seems to have picked up dramatically of late, probably because my lovely friends appreciate that time is finite) and the other stuff that normal life requires like shopping. This is my new normal.

Yet More Interesting Side Effects

Some time ago I developed a Morton's neuroma in my left foot. This is a swelling of the nerve which runs along the foot towards the toes. The effect of this is a numb toe. The treatment for this is to inject the neuroma with steroids. Having an injection between the toes is every bit as painful a you might imagine. However, it was worth it as the steroids did their stuff and the numbness went.

Fast forward a year or so and Morton's neuromas are the least of my worries.

At every assessment the nurses ask all about all and any side effects. The list can appear endless. I'm never entirely certain what is a direct side effect of the treatment and what is just "one of those things".

Up until recently the weather has been such that I have been wearing shoes, socks and slippers. Not all at the same time obviously. Now that the weather has improved slightly I have taken to wearing my beloved flip-flops. Not having my tootsies corralled into various footwear has led to my noticing that my Morton's neuroma had returned.

I think I may well be wrong because not only is my original toe numb but I also have numbness in my other foot and a little bit in both hands. This is peripheral neuropathy. Peripheral - at the edge, neuropathy - nerve suffering/disease/disorder.

At the moment it is not a problem and it is one of the many side effects of the chemotherapy element of my treatment, which I have just finished. I am hopeful that now I am no longer being treated with docetaxel this along with the other annoying side effects will disappear leaving no long term damage.

This highlights one of the many problems of treatment, I never really know what is and what isn't a side effect. Some are very obvious, such as hair loss, fatigue and loss of taste. Others, such as mild numbness and pins and needles are more difficult to pin down until they become very, very obvious.

Added to this, even telling the nurses about every little perceived side effect seems like a tick box exercise, as this is literally what they do. I am uncertain as to what happens to the sheet they complete each visit. Do the team look at it and chart the progress and severity of the side effects until a particular line is crossed? Or is the sheet just filed away in my medical records never to be consulted again? I suspect the latter.

There's More To A Hospice

Mention the word hospice and most people, myself included, think of it as a place to die.

Well you'd be surprised that this vital service actually accounts for a small part of their operations.

I am going to my local hospice as an outpatient to avail myself of their numerous complementary treatments.

As you are aware I have secondary breast cancer in my spine. Since this flared up about 7 months ago I have done little or no exercise. I used to swim, walk and do yoga. As a consequence my back becomes stiff and achy and is in dire need of a massage. I mentioned this to my oncologist and asked if I could go to the Linda Jackson Centre at Mount Vernon, she suggested that I could go to St.Luke's Hospice which is loads closer. Little did I realise that when we moved to our current house 15 years ago how convenient it would be, both my local hospital and the hospice are less than a mile and a half away.

I had my introductory appointment earlier this week. My daughter came with me and posted on facebook where she was and who she was with. I then had to reassure my facebook friends that I was there as an outpatient rather than to end my days. Much relief all round.

The in-patient service, as well as providing end of life care, also offer respite care and pain control. To quote the nurse, you come in for a short stay while they "mess about with your pain meds". I think this might be a technical term.

The outpatient department appears to account for the greater part of their activities. There is acupuncture, aromatherapy, massage, physiotherapy, reflexology, reiki/healing, excerise, sound therapy, relaxation and various art activities, as well as group activities such as counselling etc.

As you can see I shall be quite busy as I intend to try everything and see what suits me best. I shall certainly be going to the weekly relaxation session as actually "switching off" is very necessary.

On the whole the atmosphere of the hospice is rather jolly and I look forward to using its numerous facilities for many years to come.

Side Effects and Consequences

I have written quite a lot about the various side effects I have endured. Some are short and sharp some are long and irksome.

What I haven't written about is the consequences of the side effects.

The vast majority of the side effects have no further consequences, which by and large is a good thing.

What I have noticed is that the "minor" side effects appear to have the more annoying consequences.

One of the minor side effects is that I have slightly dry eyes. On a day to day basis it's not much of a problem. However, I wear gas permeable contact lenses and every so often the dryness makes getting my lenses out a little problematic. This problematic removal has led to two bouts of conjunctivitis which is, as you can imagine, painful and very annoying. It means that I have to wear my glasses, which I hate with a vengeance. I have eye drops which work well in clearing it up. I also have eye drops to combat the dryness, which I really should use more often. The problem is that the dryness of my eyes isn't very noticeable until I try to remove my lenses. I am hoping that this side effect will abate in the future.

Another side effect is that my skin is very dry and prone not only to spots on my head and face (I like to think of it as going through my second adolescence) but also, for want of a better description, holes in my skin. These holes bleed like the proverbial stuck pig and also take a long time to heal. What makes the healing process more protracted is that my skin has lost its elasticity, so any stretching of my skin results in splits which are not only painful but again take a long time to heal. It would appear that no amount of moisturiser and imbibing of liquids can combat this dryness of either my eyes nor my skin. Obviously, I don't put moisturiser in my eyes, or at least I haven't tried it yet.

Scan, Good News, Bad News

I had my "let's see how the treatment is going" scan a couple of weeks ago.

Things I have learnt from having my scan.

If it takes two attempts to find a vein, go for the second site first, especially if you have to call a someone else to do, because they always get the vein.

I also now know the difference between a radiographer and a radiologist. The latter is a doctor the former is not.

Finally, it is more painful removing the plaster which covers the cannular, then it does putting the cannula in, especially if it is removed against the hair growth. Bizarrely in spite of my hair loss I still have remarkably hairy arms.

In the time honoured fashion I will give you the bad news first.

I still have cancer, which is no surprise as I have incurable secondary breast cancer.

I also have slight damage to my lungs as a result of collateral damage from the radiotherapy. It is minor and explains my slight breathlessness together with my reduced haemaglobin level.

The good news is that my tumours have shrunk, quite a lot. Given that my oncologist was aiming for stability, I have exceeded expectations. Hooray!

So what happens now?

I will have the final round of six full monty treatments at the beginning of June and then the chemo element (docetaxel) will be dropped and I will continue on the maintenance regimen. That is just the monoclonal drugs Hercaptin and Pertuzamab. During this I will have 4 monthly scans until I receive just the "Bad News". Then the oncologist will put me on some other drugs of which she has many in her stock of ways to torture her patients.

So here's to the next few years of 3 weekly visits to the hospital.

Mortality

2016 is panning out to be the worst year for celebrity deaths.

It seems to me that hardly a week goes by without some beloved celebrity death being announced on the news. A shocking number are "premature". Although from where I'm standing, dying in my early 60s seems a good deal to me. For those who don't know I am 52.

As you can imagine every time this happens, especially if the death is caused by cancer, my own mortality plays on my mind.

None of us know when we are going to die. I don't, although unlike most people, I do have a fairly good idea of what I am going to die of, unless of course the 114 bus decides to play a part in my downfall.

Many people have asked me for how long I have to do chemo. I tell them "until I die". The reaction to this varies from, "oh don't say that!", as if not saying it will somehow stop my death, to "I'm sure you'll get better.", I won't, I have incurable cancer, there is no "getting better".

I hasten to add I could be doing this for a very long time. Advances in treatment of secondary breast cancer, whilst not as good as they could be, are much improved on what they were even 5 years ago. I trust that my treatment will continue to work and that, although my current "normal life" can be a bit crappy, it certainly beats the alternative.

For the record, I don't live each day as if it's my last. I'm doing pretty much what I did before, just a bit slower. I have no bucket list. If I had wanted to hurl myself out of a perfectly serviceable aeroplane I'd have probably done it by now. The same goes for visiting far flung destinations.

So my bottom line is, death is inevitable. Some of us will put off our final day for decades, some of us won't.

Handy Hints For Whiling Away The Time Whilst Undergoing Chemotherapy

I spend about 5 to 6 hours in the chemo unit every three weeks.

It is remarkably boring, as you can imagine.

Fortunately, unlike 5 years ago I do not suffer from any particularly adverse side effects, that is no projectile vomiting, which is nice.

The reason for the length of my visit is because I have 4 different drugs, plus two pre-meds as well as the saline flushes between each infusion.

The chemotherapy drug , docetaxel has to be given for over a period of one hour.

I have to wait about half an hour for the pre-meds to kick in and the other three drugs each take about half an hour. Add to this the waiting for the busy nurses to change between flushing and infusions when the pump goes beep you can see where the time goes albeit very slowly.

Things that I consider essential when visiting the chemo unit.

My husband, or failing that, another "gofer" friend. This is someone to talk to, hold hands with, and more essentially, someone who can get food and drink from the far flung eateries of the hospital.

Newpapers for reading and crosswords etc. and obviously a pen.

A book, even more obviously. Given the amount time I have spent there, you'd think I'd have been able to have read War and Peace backwards and forwards. This is not the case for two reasons, I am a slow reader, as my children will attest, and also doing anything for any length of time is not really very easy with all the comings and goings in the unit.

I would also recommend wearing comfortable clothing. The temperature of the unit and my body fluctuate wildly. I wear a full length zipped fleece which given I have a portacath I can take off completely. This would not be possible if they were using a vein in my arm, but being able to unzip it would help a bit if I were getting hot. In the unlikely event that you get cold they have blankets and heat pads.

The chairs are very comfortable and adjustable so snoozing is also an option.

If you are at the unit long enough, that is over lunchtime, the staff come round and take your sandwich, fruit, drink,crisps and yoghurt order. They also offer tea and coffee. Whilst I do take advantage of the latter I bring my own sandwich as they do not do prawn mayonnaise and I like to think that I am saving the NHS a very little bit of money.

Looking around the unit, there are a few who have a tablet/kindle, (my husband for one), and they are mostly the person accompanying the patient, by and large most people are just sitting there staring into space.

Even with all of these things the time does pass very slowly and when I am finished I leave the unit like a greyhound out of the traps. This might be more attributable to the numerous steroids I have to take rather than the relief of the session being over.

It's Nice To Be Liked

Today I had my blood test to check that everything is in order before they pump me full of drugs on Friday.

I had my test in the chemotherapy unit which, as I have said before, is infinitely preferable to having it done in the blood clinic where not only do you have to run the gauntlet of the main hospital and all those germ laden people, but also have to endure the glares of the people who have to take and ticket and wait as you effectively queue jump.

Having the blood test in the chemo unit also saves time, as they do my assessment then rather than on the day of my chemotherapy.

The assessment involves checking my weight which is vaguely depressing but since it's in kilos and I am old school I am only aware if I have gained or lost weight rather than what my actual weight is.

This is also when I get quizzed about any side effects and problems I might be having. This is the time to moan ad nauseam about how terrible everything is, how much I suffer and discuss at length the consistency and frequency of my poo.

I like to think that by and large I am a lovely person to have around. Well apparently I am. The Sister commented that they all like it when I come in. I can only presume that they enjoy my sardonic wit and general good humour whilst enduring the joys of cancer and its treatment. Anyway, being told that I'm nice to have around has put me in a very good mood, which is nice.

Hair Loss and Hair Cuts

As I have said before, my hair has not so much fallen out as thinned considerably. Consequently I have had to have a hair cut, which my lovely hairdresser did a couple of days ago. So although my hair is looking very thin it is now looking a bit tidier.

Hair loss due to chemotherapy obviously affects all the hair not just that on your head. Interestingly my left eyebrow is very sparse whilst my right one is hardly affected at all. Also I didn't bother shaving my legs before I started on my treatment as I assumed that it would fall out. Well it has, a bit, but the hair that has not disappeared from my legs has continued to grow apace such that I have sparsely but very shaggy leg hair, some of which are up to about and inch and a half long!

It is all very strange but as I have pointed out the drugs that I am being given are not all chemotherapy drugs like last time, so I presume that this is why my hair loss has been less and more erratic.

The Cleanest Teeth In North West London And My Unsung Hero

I haven't updated my blog for a week as not much different has happened this time round.

Day after treatment full of (steroid) beans and energy, Sunday spent in bed with excruciatingly painful legs, rest of the week spent very close to the loo, together with the sudden and overwhelming knackeredness.

The cardboardy mouth-feel is irksome but not too life affecting. In general I seem to suffer from what feels like a lack of spit, which in actual fact I am not. Maybe my spit is not spitty enough. Anyway, I thought that chewing gum might help, it didn't. The only thing that seems to help is brushing my teeth, so at least my dentist will be pleased.

The joy that is cancer treatment is a long hard slog. The three week cycle is split between feeling crap, feeling half-human and feeling quite normal. So I reckon I get about half my time functioning on an almost normal level. During all of my treatment, hospital visits and the rest, there has been one person who has schelpped me and him to and from the hospital, put cream and aloe vera gel on my radiation burns, helped me get dressed when it was simply too difficult for me, cooked pretty much every meal for the last 3 months (although this last one is not that heroic as he generally does most of the cooking) and put up with eating the same food over and over again (his cottage pie is a wonder to behold!). All of this he has done with his usual good humour and without complaint. Everything I have gone through during the last 6 years and especially the last 4 months would have been considerably more of an ordeal without my wonderful, wonderful husband. Thank you.

Third Time's A Charm

My blood test at the main blood clinic went well, although I was very puffed by the time I had got there, making me worry that my red blood count might be down. It wasn't. I passed my blood test. I discussed the fact that chemo patients have to lurk near the door without taking a ticket and thus get glared at by those who do have to take a ticket and wait. Apparently they cannot put a sign up saying that chemo patients have priority because of patient confidentiality, which I can understand.

As it happens I now have the option as to whether I have my blood test, with an appointment, up in the chemo unit or do the lurking downstairs at the main clinic. You will not be surprised that I have chosen the former.

I have also deduced that the umpteen steroids I have to take before during and after my chemo might be responsible for my tastebuds going AWOL.

My chemo session went without event, which was nice. Although because I have to have pre-meds for the herceptin, and the decotaxel things do take quite a while. I considered being done within 5 hours pretty good going.

As per usual being dosed up on steroids means that today, the day after chemo, I am full of energy and have no pain. At this time I feel very optimistic, by Sunday when my legs are hurting and all the other delightful side effects start to kick in, I feel much less optimistic.

How Many?

I am frequently asked how many rounds of chemotherapy I have to undergo this time.

Good question. The short answer is I don't know.

On my notes it says "PD". I quipped that this means Patient Died, what it actually means is progression of disease. So I am presuming that I will continue with my current regimen until something happens to the cancer. Hopefully the disease will abate, if the disease progresses then I am presuming that I will be put on another type of chemo. Who knows? I banking on the fact that my oncologist does.

On this slightly grim subject I thought that I would enlighten you about the terms, terminal, incurable and treatable.

When breast cancer recurs anywhere except the breast it is defined as incurable as it cannot be surgically removed. It is however treatable as other things can be done such as radiotherapy and chemotherapy. Treatment can continue for months and years. Once it becomes untreatable it is then terminal and all that can be done is to make the patient comfortable. Having said that people live with terminal cancer for months and years. So there you have it.

Hair Today, Going Tomorrow Or Perhaps The Day After Or The Day After The That

My hair started to fall out at the end of February about 2 weeks after my first chemo and has continued to do so for the past 2 weeks.

It is really quite remarkable exactly how much of my hair can fall out before I start looking bald.

Whilst I can see that it is much, much thinner the overall effect is not that of baldness.Nor do I think that I look like a scrofulous plague victim yet. I suspect that it helps that my hair is white as is my scalp.

It doesn't seem to fall out in the clumps and handfuls that it did last time. My pillow in the morning has hair on it, but again not vast quantities. About the only irksome aspect of my hair falling out is that the collars of all my clothes and coats are liberally covered and it is remarkably difficult to remove, other than picking each one off individually.

General Update

Here I am at the end of the first week of my second round of chemo.

My back has improved considerably thanks to the application of industrial quantities of Aloe Vera gel. It is now just itchy rather than extremely sore.

I have as expected suffered from diarrhoea for the last few days. Bizarrely though it seems to be limited to mid to late morning, the rest of the time things are a little firmer, so  have not felt the need to take any medication for it.

I have managed to have a daily walk albeit only round the block. This is mainly because of tiredness, achy legs and my slight nervousness about being away from my loo.

As you are probably aware I take a lot of pills. The problem I am now having is that whereas I used to be brilliant at taking pills I am now completely useless. I can't swallow them, I retch and generally have the devil's own job getting them down.

My taste buds have gone south, so stuff tastes of nothing. Mayonnaise tastes like cream. Honey Nut Cheerios have lost their appeal, fortunately Sugar Puffs or as they're now called Honey Monster Puffs taste roughly the same as do Quavers. Consequently, although I know I need to eat I find it rather a chore. This leads to me feeling more tired and generally grotty. So I have to make a concerted effort to eat food rather than cereal and crisps. Fortunately choc ice lollies taste very good.

I find that this time round the first week or so after chemo is not a linear progression from feeling completely crappy to feeling better. It is more a case of two steps forward and one and a half steps back. Still onward and upwards.

Long Drawn Out Side Effects

The second round of chemo has had the expected side effects except much more so with respect to the pains in my legs. I spent pretty much all of yesterday in bed as the pain, even with painkillers was excruciating. Today the pain is abating which is good and I managed to go for a very, very slow walk around the block.

Another side effect which has taken quite a time to show itself is from the radiotherapy. I finished radiotherapy a little over six weeks ago and it is now that my back is red raw and very itchy. I presume that this means that the radiotherapy is still doing its stuff.

To be fair the side effects from the chemo do seem to come and go with relative speed, which makes them easier to deal with knowing that however grim things might be at the time just wait a little while and it will pass.

Seconds Out, Round Two

Well I passed the blood test, so my second round of chemotherapy went ahead.

Strictly speaking 3 of the 4 drugs I have are not chemotherapy as they are not cytotoxic. Two are monoclonal and the final one is to strengthen my bones.

Sadly, the blood test that I had up at the chemo unit was only trial, so from now on it's back to lurking by the door of the blood clinic in the main hospital.

I spent basically all day at the unit as each of the drugs take about an hour to push through and then there is flushing with saline after each one. Not to mention the preloading of antihistamine and other drugs to prevent me reacting to the herceptin.

In spite of having both hands free due to the wonder that is the portacath and thus being able to do crosswords etc. it gets really very boring. The boredom is punctuated with multiple trips to the loo and dozing.

The best part of this type of chemo is that I don't feel sick and in fact the day after (today) I am full of beans. Unfortunately this does wear off by the second day. So I made the most of today by going for a massive long walk. I will try, weather permitting, to continue to go for a daily walk, probably not as far or as for long as I did today, but try I will.

Blood Tests, Bruises and Hair

Previously having the obligatory blood test involved lurking at the door of hospital blood test unit and effectively queue jump. This actually requires a certain amount of chutzpah as those who have taken a queue ticket sit and glare at you, in spite of ostentatiously waving your chemotherapy book. The blood test people were, and probably are still, lovely, but it wasn't the best of experiences.

Now you go to the chemotherapy unit to have your blood test, This avoids the germ laden main body of the hospital and there are no people to glare at the audacity of your queue jumping and is a much better system.

In spite of having a portacath (the greatest invention known to medical science - yes I know I go on about its wonderfulness) the blood test has to be taken from a vein in my arm, of which I have 2 or possibly 3 barely functioning ones.

My son came with me as I was driving him back to university afterwards (lucky him on both counts!). He gives blood and commented about how very teeny weeny the needle was for the blood test. In comparison the ones used for blood donation look like Bic pens! I hope this doesn't put off anyone from donating their blood.

Anyway, the nurse finds a vein - hooray! Then says the words your really don't want to hear, "Ooops the vein's popped." I now have a rather spectacular large bruise on the upper part of my lower arem. It's amazing how much damage a small needle can cause. So she then goes for the vein at the base of my thumb total success this time.

As stated previously the chances of my hair falling out was about 70% for 2 out the 3 drugs I am being given. Well I reckon that's 140% likelihood that my hair will fall out and so it is. Strangely, although I have found quite a lot of hair on the collar of my clothes I have not found any on my pillow as yet and even when I wash and comb my hair not much falls out although it is a bit more than I would usually expect. Assuming that I don't look like some scrofulous plague victim I probably won't shave it all off. If I do I will.

Itches and Other Minor Irritations

My back itches a lot. Primarily between my shoulderblades the site where the cancer returned and where I had radiotherapy. So I am not sure if it the radiotherapy making its presence felt or the chemotherapy reacting with the cancer, either way its itchy and irritating.

As with standard chemotherapy my tastebuds have gone "tilt". Fortunately I have not, yet, suffered from biting my tongue/cheeks etc. which I did last time. However I spend a lot of my time searching for food that not only tastes like it should but also feels like it should in my mouth. So far things that taste tangy seem to be best, such as tomato sauce and ketchup and mayonnaise.

What is irritating is that before all of this started I used to have a couple of croissant and a cup of coffee on Saturday morning. I no longer do this as croissants taste and feel like cardboard and coffee tastes quite sour. So every morning I have a plain yoghurt and a bowl of Honey Nut Cheerios.

Added to the constant search for food that I want to eat is the fact that even if I do find something to eat I find that quite often half-way through eating the food the taste and texture change to cardboard.

One of the things that, joy of joys, tastes and feels right is Robinsons Lemon Barley Water, which I am getting through in industrial quantities.

My quest for hot drinks has led me to fruit teas, principally St. Clements and blackberry.

The joy of food has been taken away from me.

My bowels are nearly under control although I must be the only person to have developed piles while suffering from diarrhoea.

Whilst all of the above are minor irritations on their own, cumulatively they are the most annoying things ever.

I am hoping that the next week will bring me more normality before I start the whole process again.

A Week Is A Long Time In Chemotherapy

So it's just over a week since my first chemotherapy and I have to say it has been the longest week.

Unlike the last time I did chemotherapy where I felt absolutely rubbish within hours and got progressively better as the week wore on, this time round I felt fabulous the day after, thanks to the steroids, the following day my legs started to hurt a lot and continued to do so for the next 2 days. Once this had abated the diarrhoea started and that was at best exhausting.

The hospital says to phone if you are concerned about anything and by and large the hospital are very good at dealing with my concerns. However, after the first day of diarrhoea I called the chemo unit and asked what I should be doing. There then followed a long discussion about my diarrhoea and the nurse, who I feel does not inspire confidence, said I should wait  and see. So I did. Fortunately the following day the nurse who actually administers my chemo called and said that I really shouldn't be putting up with more than 3 episodes a day, irrespective of consistency, and that it was all right for me to take some Imodium. Hooray!

So I take the medicine and things start to settle down, which is such a relief.

At the same time as all of this has been the ongoing nose bleed, which I haven't bothered to tell the hospital about as I'm really not sure what they could do. My nose is sore and breathing gets more difficult as my nostrils fill with scabs and blood clots. Suffice to say that clearing the debris is painful but necessary and it does seem that the bleeding is reducing.

Yesterday also marked my first social outing in a week. I was very iffy about going out as I was feeling fairly rubbish, but mentally I really needed to go. So off we go to my husband's old boys quiz night. Initially I did feel crap and had already warned that an early departure might be in the offing. However, as the evening wore on and fish and chips (well I only had the chips as I couldn't face the fish) were consumed I felt much better. We've been going to this quiz for years and finally this year we won. Definitely worth going out.

Don't Plan - Do

Best laid plans and all that.

When I went to bed last night I had intended to get up this morning, have a shower, breakfast and go for a walk.

That all went by the board as I spent a good deal of last night on the loo with diarrhoea. It wasn't too bad but coupled with the stomach ache I did not have a good night. Diarrhoea is yet another side effect of pertuzumab. I hope it doesn't last for much longer as it compounds my embedded knackeredness.

As it happens I did eventually manage a shower, breakfast and walk, just not until late morning early afternoon and my walk was to the end of the road and back rather than round the block. Still at least I managed something.

It's only been 5 days since I had my pertuzumab but it seems to have been the longest 5 days ever.

I am hoping that this regimen follows the 3 week cycle I did 5 years ago, as I can cope if I know that I'm going to have crappy (quite literally) week, followed by a couple of decent ones.

Another side effect which is that I am suffering from a near permanent nose bleed. It's not a gusher just a chronic constant trickle.

What A Difference A Day Makes

Apart from waking up with the vice like headache the pains in my legs have abated a lot. So much so that my two cats were happily ensconced on my lap last night. The speed at which things change is amazing. I can only presume that these side effects will lessen over time, until I start the whole rigmarole again.

Another side effect is a near permanent nose bleed, which is what happened last time. I'm glad that I don't appear to be suffering from any type of nausea which does make everything easier.

I have also managed to go for another very slow walk, although not a slow as yesterday's. Although it still takes about 15 minutes which is quite slow.  Never take the ability to walk for granted.

Pain, Pain and Yet More Pain

The steroids wear off after a day or so, which is somewhat annoying as I was rather enjoying the very upbeat mood I was in.

Once they wear off I started to get really achy legs. Pain in the joints and muscle spasms are a side effect of pertuzumab. What they don't tell you is exactly how painful is can be. I take painkillers which do help a little. I decide that a gentle very, very slow walk around the block might help, which it does a little.

I wake up with painful legs and a headache which feels as though my head is being squashed in a vice. More painkillers. The worst part of having such sore legs is that ordinarily in the evening one or two cats sit on my lap. This is now not possible as the weight of a cat is just too painful to bear. I am hoping that this side effect will eventually abate, as walking is a very slow and painful process.

Chemotherapy part 2

Ordinarily I will having the umpteen chemotherapy stuff all on the same day, and it will take the best part of a day. However, as this is the beginning I have had to have them over two days just in case I have an adverse reaction to any of them.

We arrive at the appointed time, there is a delay due to the teaching thing that the nurses are doing overrunning and the fact the the drugs had not come up from the pharmacy, however my nurse calls me in anyway. I have the usual weigh in, blood pressure, temperature and blood saturation checks. All are fine eventually. I must remember to breath and deeply.

The first task is to remove the stitches from my portacath. This is not too uncomfortable although it did feel a little odd. What hurts more than anything is the initial removal of the large plaster which is covering the portacath site and then the cleaning of the area with alcohol, which stings beyond belief. It would appear that I have developed a slight allergy to plaster. I think it might be the changing of the plaster over the last week or so from the same sight has just removed the very top layer of my skin, either way I have a very sore chest, Savlon to the rescue.

Last night I read up all about the various drugs I am having and discovered that yesterday's ones are not vomit inducing, so I am a little nervous about today's treatment. The drug I am being given has a vomit rate of 2% so I am really hoping that I am in the majority. Also hair loss affects about 10% so again I am hoping to be in the majority. I do love statistics.

I have had my various steroids and anti-emetics beforehand and so the treatment starts. It takes about an hour and so far so good. The final drug is to strengthen my bones and this takes about 20 minutes. Again so far so good no obvious side effects. I have a slight headache, but then I have one of those most of the time.

Once again I cannot praise the portacath enough. Apparently, in some countries having a portacath fitted is a matter of course for breast cancer patients. It would certainly help those who have a needle phobia.

We are released just after lunch and I bounce out. I know that it is the steroids but I feel full of energy and my walking pace is back to its normal speed. My various aches, pains and stiffness have also abated.

So far the only reaction I have had is the one I had last time to the herceptin which is slightly red itchy cheeks. This time it is much less as my cheeks are as red or itchy and I am banking on the fact that last time it lasted about 24 hours/

All I have to do for the next week or so is avoid getting ill so I will be crowds and the great unwashed which suits me fine. I will also, weather permitting, be going for daily walks around the neighbourhood. My mood in general is good and as I said I do feel much less knackered. I love drugs.

Best Laid Plans and The Wonder That Is The Portacath

So we arrive in plenty of time for my appointment. A loading does of Herceptin.

I am expecting to be in all day, which we were, I do not expect that I have other chemotherapy and that my next appointment, rather than being next Tuesday is in fact tomorrow.

I'm not entirely certain what the other chemotherapy I had was. I am given intravenous steroids, anti-emetics, so given I had the steroids after lunch I am told to expect a poor night's sleep, which to be honest is what I have had for the past umpteen years, so it's not really a problem.

The other chemotherapy given and once I have been flushes and an anti-coagulant is given I can go home. The total stay was from about 9.30am to about 5.30pm. As I write this, having taken an anti-emetic tablet, I am feeling considerably better than I did the last time I did chemo. So some improvement. Which is good.

The Wonder That Is The Portacath cannot be understated. The needle going in genuinely doesn't hurt and is leaves both my arms free, which means doing crosswords, eating and going to the loo are just so much easier.

Here's hoping that tomorrow's trip to the chemo unit is as unexciting as today's

Post Portacath Update

I spent a fairly uncomfortable night on Monday as I could feel the catheter that runs from my neck to my heart. I thought at that point that this was going to be a very annoying thing. However the human body's ability to get used to anything never ceases to amaze me. By Tuesday evening it was hardly noticeable and today, three days later I am completely unaware of it.

The most annoying aspect of the insertion is the itching of the stitches and bruises, but even this is abating at a delightfully speedy rate.

I am still suffering from sudden and overwhelming fatigue, but I am taking fewer painkillers, which might explain this. In general I am not so much suffering from pain as general stiffness. I know that if I do a bit more gentle exercise, principally walking, that I will reap the benefit.

Also according to the Daily Mail, so it must be true, gentle exercise whilst doing chemotherapy helps the chemo work better and more thoroughly, at least if you are a mouse.

My Portacath Insertion

This portacath insertion is a short procedure.

We arrive at 8.45am shortly before the first member of staff.

The intervention unit does portacath insertions, biopsies, angiograms, angioplasties and other similar stuff.

The staff are all unfailingly lovely.

I could be sedated, but then recovery takes longer, I would have to stay on the unit for about 3 hours and I won't be able to eat for a while afterwards. I opt not to be sedated. Getting home quickly is my aim.

The surgeon is Italian, quick and has done thousands of portacaths. He explains everything that is going to happen.

I have the ubiquitous cannula put in my arm.I walk to the theatre, all of 10 yards, hop onto the bed, which is very narrow, The staff all introduce themselves and other important stuff is discussed between the numerous staff.

I am covered first in betadine, then a large sterile sheet with a hole where the procedure will take place.

I am told that the local anaesthetic will sting as it is injected. They are not kidding!

The first part involves inserting the catheter into my jugular vein. This is really uncomfortable but not painful. My vein is quite small and a bit collapsed as a result of my not eating or drinking for hours and hours beforehand as instructed. I have to pretend to strain as if on the loo as this expands the vein making insertion easier.

Next more local anaesthetic in the site for the actual port, just above my right breast. This really, really stings and I need loads as I am such a wimp. The surgeon then starts making the pocket for the port, in spite of the local anaesthetic this hurts, but a delightful radiographer holds my hand and talks to me about my children and other stuff to distract me. After much tugging and pushing etc. the portacath is fitted and tested. I am then sewn up, cleaned up and wheeled on my bed to recovery. The whole thing took about 30 minutes.

I am kept an eye on, blood pressure monitored etc. The surgeon tells me I can go home - hooray.

I get home, take copious quantities of painkillers, a late breakfast and then a well deserved afternoon snooze.

Chemo Chat and Portacath Fitting

Today I had my chemo chat. This entails the nurse taking copious amounts of information from me about my appetite, any drugs I'm already taking, any allergies, weight (over), height (under), blood pressure (high - white coat syndrome) and blood.

She then tells us all about the drugs I will be given and their numerous side effects which involve the usual, nausea, hair loss, anaemia, constipation, diarrhoea, possible infection and so on. I am also told all about the drugs I have to take before during and after each visit. I will be rattling.

She seems surprised that I want neither the cold cap nor a wig. Hair loss is not the worst side effect in my opinion.

We also watch a short DVD about infection and how very, very important it is to get to the hospital straight away. So no stiff upper lips or heroics.

I am given a mountain of paperwork mostly about the drugs and their side effects.

I have my blood taken in the chemo unit, which depressingly is twice the size it was last time I passed this way. Cancer the "gift" that just keeps giving.

I am scheduled for my Herceptin on the 11th February and then the chemo on the 16th, after this they will be given at the same time every three weeks. Currently they're not sure if I will be doing 3 or 6 rounds as the consultant hasn't said, either way it won't be more than 6, this time.

Given that I have barely 2 usable veins in my right arm I am having a portacath fitted on Monday. Such are the wonders of the internet I found a video of one being fitted. Those of a nervous or squeamish disposition might not want to watch the video.

This will mean that the chemo nurses won't have to try and find a vein and also that the very few veins I have left will remain intact. Some of the advantages of a portacath over a Hickman line are reduced infection, leakage and I will be able to go swimming with it. For the procedure I will be sedated so I am hoping that I will be blissfully unaware of what is happening.

Little White Lies

I am still suffering the after effects of radiotherapy, overwhelming fatigue and a sporadic gippy tummy. Nothing that a long afternoon snooze doesn't sort out.

I have managed to stroll up to the post office very slowly, but came back slightly quicker due to the aforementioned gippy tummy.

As for the little white lies, I bump into a lot of people on my limited travels, and rather than tell them about the return of the cancer, I tell them that I have done my back in by fracturing a vertebrae and as it happens a rib as well. So whilst this is not actually a lie, I am being economical with the truth. I could so be a politician!

Why do I do this? Well it's partially to save me having to deal with people's reaction and partially because to save their feelings. Also, we all know people who, when you ask them how there are, actually tell you and I am trying to avoid doing that. Clearly not succeeding all that well as otherwise I wouldn't be doing a blog.

Post Radiotherapy Effects and General Musings

So my radiotherapy side effects are considerably less horrible than those I had with chemotherapy.

Last weekend I felt absolutely terrible and thought that this was from the first round of radiotherapy, so I was not really looking forward to the remaining 4 sessions. I now think that the reason I had such a horrible weekend last weekend was primarily due to the truly grim night I spent at Northwick Park Hospital lying flat on my back, not moving and definitely not sleeping.

I have a slightly pink back, according to Terry, which is subsiding. They also warned me that I would have back pain from the radiotherapy. Well given that I was in considerable pain before the radiotherapy, anything else would not really be a problem. As it happens my back pain is subsiding, so much so that I have reduced the considerable amount of painkillers I have been taking. My bowels are suffering a bit, but this might also be due to the reduction of painkillers. So it all looks good for the moment.

The MacMillan nurse called me on Friday to see how I was doing. Apparently, I have a gap of about 6 weeks before any further treatment, presumably to let all the after effects from the radiotherapy to abate, which is nice, as I have a couple of birthdays and a wedding to attend between then and now.

As you can imagine I have had a lot of time to ponder on my lot.

Every year I had a mammogram and an MRI of my remaining breast, which all came back clear. At some point over the last five years I did have a hystoscopy as I had a slightly suspicious discharge that came back clear. I also had an endoscopy when my hiatus hernia appeared to worsen, this also came back clear, in fact my hiatus hernia has gone. So it's not as though I have ignored potential symptoms. Would it be cost effective to do yearly full CT to every cancer patient? At what point would you stop doing annual CT scans? I'm not sure of the answers to any of these questions. I look back over the last few years and think of all the various aches and pains I have had in my back, shoulders and neck. All of which were sorted out with physiotherapy. I have had problems with my neck, shoulders and back for decades, primarily due to slouching over a desk for a living. Did the cancer move in there because I already have a weakness there? I think that on balance I probably caught the recurrence early. In some ways it is good that the cancer did take up residence in my bones and cause pain, rather than in some other organ where potentially I wouldn't have noticed until the prognosis was much worse. So overall I think that I probably have probably got the medical intervention as early as I reasonably could have.

Beginner's Guide To Radiotherapy

The first time round I didn't have to do radiotherapy, so this is all new to me.

So having departed Northwick Park Hospital on Friday lunchtime, we arrive at Mount Vernon Cancer Centre at about 2.30pm.

I am taken through for yet another CT scan. During this I am scanned and 4 tattoos are made, one slap bang in the middle of my decolletage the other 3 are located just below my belly button and the other 2 in a line with this one, on each of my hips. These are to guide the radiotherapy people as to where I am to be zapped.

Calculations have to be made and this all takes time.

Eventually, we get to go to the radiotherapy department at about 5.15pm.

I lie flat on my back and with the help of lasers, callipers and rulers, the two radiographers call various numbers to each other. The bed I am on is moved this way and that, the radiotherapy machine is also moved this way and that until both are satisfied. They leave through the 2 foot thick door. First they take an x-ray and then they do the actual zapping. They then return to do the next bit lower down. The same number calling is done and the whole procedure is repeated. The whole thing takes about 15-20 minutes.

The journey there and back takes more time than the actual treatment.

I come home to my lovely, lovely bed and spend a very good night sleeping.

I am warned that the side effects can entail, "sunburn" on my skin, a sore throat and possible bowel issues, either diarrhoea or constipation. Well that's covered all eventualities.

I am warned that my back pain may well get worse. I spend quite an uncomfortable weekend as various bits of my back at different times hurt.

I am dreading the next 4 sessions, however by Tuesday, whilst I am still walking incredibly slowly, my mood and pain are improved and bearable.

I have been slapping, or rather Terry has, large quantities of aloe vera gel on my back, which is initially freezing, but so far does appear to be doing the trick in keeping the "sunburn" at bay.

I spend my days having a lie-in, having breakfast, strolling very, very slowly, up the road, watching TV and having afternoon snoozes.

The side effects can last up to two weeks after treatment is completed. I am hoping that since I am only having 5 sessions rather than 3 weeks worth, that my side effects will be small and short lived, so that I can get back to normal sooner rather than later.

"A little disappointing"

So I got the all clear in September 2015.

In July 2015 I developed the world's worst stiff neck. So I go to physiotherapy and things improve.

In November I am put on a new drug Arimidex to replace the Tamoxifen. About 2 weeks after I start the new drug my ribs start to hurt for no apparent reason. I see the GP, have an X-ray and told to come back if things don't improve.

I go back and various scans are organised for December.

On December 9th at about midday I miss my footing stepping off a pavement sending a violent and shuddering shock wave through my body. The pain in my back is indescribable, but eventually recedes.

I have my bone scan on the 22nd of December. I go to see the oncologist on 7th January to be told that the pain is my back is the breast cancer cells taking up residence. She says that this is "a little disappointing" but is totally treatable. "A little disappointing" has to be the understatement of the year.

I have a further CT scan the following Tuesday to see if it has got anywhere else.

I get an urgent call from the oncologist's secretary the following day to come in on Thursday morning. This is not really what I want to hear, so have a sleepless night.

The reason for the urgency is because I have fractured my T1 vertebrae, which I now realise I did on December the 9th.

I need an urgent MRI to see if it is stable. If it is not then I need an operation at Charing Cross Hospital, to stabilise it.  For this I have to be admitted, so off to A&E I go. The MRI is done at 2.30pm and the images should be sent off to Charing Cross Hospital where the experts are. So now we wait and wait and wait.

I have to go on to the assessment ward where there is a bed and have to stay the night. I am also told to lie flat on my back for the rest of my stay in case the fracture is not stable. This makes going to the loo somewhat problematic. I have to use a bedpan whilst lying flat on my back and it requires 4 nurses to log roll me on and off it. There is absolutely no dignity in this and further it is incredibly difficult to wee lying flat on one's back.

I spend a very uncomfortable night, getting stiffer and stiffer. The woman in the bed next to me leaves her mobile on all night so whilst I am disturbed by the various notification bings she sleeps through them.

At 6.30am I am moved to another ward, orthopaedics and gynaecology. An interesting mix. I am put on a side ward and left.

At some point in the morning the most welcome sight is the Macmillan nurse Nicola who has come to find me. Apparently my images didn't go to Charing Cross the day before but are going now.

The Northwick Park Neurosurgeons are fairly confident the the fracture is stable so I can get out of bed to go to the loo. I will never underestimate the simple things in life again.

I eventually get the all clear and am discharged. Nicola returns to tell us to go to Mount Vernon Hospital to start my radiotherapy. This is good because had I needed an operation then the radiotherapy would not be able to start until the wound had healed.

This involves yet another CT scan and 4 tattoos.

I eventually get treated at about 6pm. The treatment itself is uneventful.

I return home never more thankful to see my bed.