I’m looking well… When I look in the mirror, a healthy-looking face looks back at me. Friends tell me too. Despite having to wear a very high factor of sun protection when I’m out, I’ve managed to get a healthy glow on my face and arms, even with the lousy summer we’ve had in the UK. My hair has thickened up and I seem to suit the short cropped look I’m wearing.
Medically, my blood counts are almost entirely within the normal ranges. The myeloma is in very good partial remission – the last test they did showed an unquantifiable number of myeloma cells – not complete remission, but pretty damn close. Thursday was Day 120, and today is exactly four months post-transplant. I passed the 100 day mark without any major problems. And yes, in many ways I’m doing quite well. But that isn’t the whole story…
You’ve heard the analogy of the seemingly calm swan madly paddling away under water. I think what’s going on inside me is not dissimilar. On the surface, all looks well, but underneath, on a cellular level, there is a lot happening.
The donor stem cells have been making themselves at home, settling in and creating my new immune system. Not surprisingly, this takes energy which is not always evident, even to me.
On top of this process, side effects of Total Body Irradiation (occurring up to 6 months afterwards) can include fatigue. Macmillan Cancer Support describes some of the effects of fatigue:
- Difficulty doing the smallest chores – even everyday activities like brushing your hair, showering or cooking can seem impossible
- A feeling of having no energy – as if you could spend the whole day in bed
- A feeling of having no strength to do anything
- Lack of concentration
- Having trouble thinking, speaking, or making decisions
- Difficulty remembering things
- Difficulty sleeping (insomnia)
- Loss of sex drive
- Feeling more emotional than usual
And from another source: “Fatigue is characterized by difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, increased sensitivity to light and the limiting of social activities once viewed as important.“
This is how it has been for me over the past weeks/months. And yet, I can sometimes get on my bike and cycle for several miles or go for an hour’s walk. Admittedly, I need to rest when I get back and am unlikely to be able to do anything else mentally or physically demanding that day.
Whereas the recovery time following an auto transplant is between three and six months, from a donor transplant they say from six to twelve months. I had thought that this was to encompass managing any GvHD, which of course it is, but I hadn’t factored in fatigue or psychological issues.
One of the difficulties is that I forget. I don’t forget that I’m in treatment for cancer or that I’ve had a stem cell transplant. It’s kind of hard to forget when you have to attend clinic every week and take anything from 20 to 27 tablets every day, plus other lotions and potions. Not to mention still having to be cautious about infections – my immune system is like a baby’s, so I don’t have the usual build-up of antibodies that a normal adult would have. But somehow, I forget that I’m not as well as I look on the outside. I have a lot of time on my hands and because I’m not actually ill, I think I need to be doing something useful, productive, contributing to society… and then feel frustrated at not having the mental or physical energy to do it.
On top of all that, or maybe because of it, some weeks ago I sank into a deep depression coupled with crippling anxiety. I suspect it is also in reaction to the uncertainty about the future, plus the ennui of being in treatment almost continuously for 19 months and ongoing.
Some of the symptoms of depression:
- Feeling of hopelessness
- Sadness, frequent crying
- Anxiety or worry
- Palpitations, panic attacks
- Withdrawal or isolation from people and social activities
- Changes in appetite, either loss of appetite or overeating
- Problems sleeping
- Feeling tired or without energy
As you can see from the two lists, some of the symptoms overlap. Fatigue and depression easily feed into each other. Everything is connected, so it is confusing trying to work it all out. Maybe I don’t have to work it out, but that’s my way of trying to cope with it. I dare say it probably doesn’t matter, only that it’s a miserable space to be in – feeling low, lethargic, lost, unmotivated, confused, excessively anxious, withdrawn and uncertain.
I find myself questioning if I am tired due to fatigue or depression. Is it a reaction to all I’ve been through or an after-effect of treatment? Are my thinking and decision-making affected by fatigue, depression, anxiety or shattered confidence? Am I not eating, not interested in food, finding things tasting wrong due to depression, after-effects of TBI or gut/mouth GvHD (more on this in another update)? It’s hard to know what’s causing what.
It seems so unfair, like I’ve been tricked… I came out of my “walk in the park” stay in hospital feeling quite well. If you recall, I was painting my bathroom the next day. I expected to gradually improve, gaining energy and an increased sense of well-being week on week, a smooth if gradual upward slope. But after the initial sense of well-being, I began to feel worse, losing energy, feeling tired and overwhelmed by everything, even the simplest of decisions too much to face, feeling shaky and anxious, panicky about quite ordinary activities.
In many ways I’ve found the depression and anxiety harder to cope with than the physical aspects of the last 19 months. Somehow there’s an element of shame and self-doubt, as though I’m just being lazy, or if only I could find the right thing to do, or change my attitude, I could “pull myself together” and get over it. I do know that this is nonsense, but I think it’s the depression speaking, so I keep needing to be reminded and reassured.
The anxiety has been the most debilitating aspect, with thoughts, worries, questions and doubts running round and round in my head, at times totally paralysing. Or waking at night in terror of I don’t know what. To calm myself, all I could do was remind myself of what is real… that I’m alive, that I’m doing well, that I have a nice place to live, good healthcare, state benefits, food, money, family, friends, etc. Sometimes it worked.
I see a counsellor, Jane, at the Haematology unit, who has been very supportive and reassuring. She reminds me that depression is an illness itself and is very common in cancer patients, particularly as treatment comes towards an end. She advises me to be patient and compassionate with myself, to not push myself to do more than I can at the moment, to sit with it and trust that it will pass, which I find almost unbearably difficult. We also talk about small ways I can manage the anxiety and ease the sense of lostness.
One thing I do is to take myself for long walks to get fresh air and movement and to try and tire myself out so I sleep better, which has to be a good thing. Just the simple act of putting one foot in front of the other, despite my head continuing to run its litany of anxieties and fears, usually has a grounding effect.
After feeling unbearably low for a few weeks with no sign of remission, Jane suggested I take anti-depressants to help me manage. I was really not keen to take them, but getting close to desperation four weeks ago, I asked my consultant, Jenny Byrne for her advice. She told me that it is very common for transplant patients to feel as I do, that between a third and a half of their patients suffer depression post-transplant and take anti-depressants with good results. I decided to give in and try them; I went to my GP that same day, who diagnosed me with ‘reactive depression’ and prescribed Fluoxetine (Prozac). On top of all the other tablets I’m taking, what’s one more?
One week, I saw another doctor, Harpreet Kaur, who was very reassuring, both in terms of how well I’m doing medically and in recognising how I’m feeling. She said she would be surprised if I wasn’t feeling as I do at this stage. She also reminded me that it is very early days. Apparently, the whole of the first year post-transplant is “very early days”.
After four weeks of taking the antidepressants, I think they are starting to have an effect. I can now find pleasure in activities, rather than just doing them because they’re good for me or might make me feel better. I can deal with emails and phone calls, so have been able to sort out a few things which needed to be done, which in turn has helped to alleviate some anxiety. I sometimes cook and am eating better. I have a sense of moving forward into a future – albeit uncertain, but not hopeless. I still struggle to get out of bed in the morning, I still need to rest a lot and get frustrated and bored and I often feel sad.
At my worst moments, it all feels unbearable and interminable, but the worst moments are less frequent now. I reassure myself by repeating the mantra of “This will pass.”