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.