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.