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.