34. The Long Haul Back to Health

It has been a l-o-n-g and boring few weeks, marked only by my birthday (thanks for all the good wishes via FB etc) and the tiny little improvements I’ve noticed on a daily basis. When I first came out of hospital I couldn’t walk anywhere around the flat without pausing for a pit stop en route, which drove me mad. After weeks of inactivity in hospital I was desperate for a change of scenery, so there was an element of novelty in being able to wander from one room to another – except by the time I’d got to the kitchen from the lounge (15 feet?) I came over all useless and had to sit at the kitchen table with my head down to recover. A big part of this was weakness from not eating as it is only in the last four of five days that I have really managed to get rid of the nausea. Or it was time for it to leave me, whatever.

I was horrified at what the Mephalin had done to my GI tract. The medics weren’t kidding when they said it would be destroyed, but I knew I needed to eat so that my body could expel the toxins and start to heal. Not quite so easily done when I was being sick every day and what food I did manage to get down often didn’t even touch the sides before it reappeared. I needed the heavy duty anti-emetics from the hospital at first, but I really wanted to come off those so I also tried two homeopathic remedies, Nux Vom (lovely name) and Arsenicum. Neither of these had much effect so I moved on to Cocculus, which was a real find. Apparently it is really good for seasickness too – talking of which I also tried Lyn’s sea sickness wrist bands, as well as massaging the relevant acupressure points on my hands. I’m not sure which helped most really, although I did take the Cocculus with me on my first few outings as I found that the hollow feeling in my stomach is what prompted the nausea. And it was hollow most of the time because I was eating so little, and I was eating so little because I felt sick…. It is at these times it is really hard to keep your spirits up; menu planning when you are busy working full time can be a real chore, but when you lose your taste for food, and the meals which used to help structure each day have morphed into hourly attempts to eat a few mouthfuls, you really crave the normality and routine. My weight was dropping at the rate of about a pound a day and I had already lost nearly two stone. In one way I was delighted as having two children and enjoying several extremely decadent cruises had increased my weight more than I wanted, but this was going to the other extreme. I knew I had to stabilise my eating and weight in order to start recovering. I tried to make sure I ate something every hour, even if it was only a spoonful of very well-chewed, steamed vegetables. The totally useless and conflicting advice from hospital was to increase dairy – have milky drinks, add butter to vegetables, eat rich cakes. Whoever thought that up was seriously having a laugh because it is the last thing a chemo patient can tolerate. And, even more ridiculous, my consultant said that my insides were like a newborn baby so dairy wouldn’t be good. Did you know there is 300% more protein in cow’s milk than human milk? Not that I was going that far, but you get the point…that cow’s milk is designed for baby cows, not humans. Er – hello?! Someone inform the dieticians and nurses! This lack of support absolutely infuriates me. All the protein drinks in hospital are milk-based, so they make you – after me, ‘Sick!’.

Anyway, enough of the sickness. I’m sick of thinking about it and you are no doubt sick of hearing about it. Suffice to say that I have clawed my way back to being able to eat more or less normally and have managed to put on three pounds this week which is a huge leap in the right direction. I am enjoying food again and last night we actually went out for a curry – how daring is that? I am also at work for my first full day today, although taking it very easily. And still eating every hour as my body is playing catch up on the calories. I have started to do a few little exercises every day to start building up some stamina and to try and beat my poor saggy muscles into a semblance of their former selves. My body has completely changed shape and I’m delighted to say that I plan on keeping it this way (except for toning up) and will thus have to go shopping for more clothes. Shame :-)

We are also just into our first complete week since January with no hospital visits. My appointment last week went really well so I was allowed off for good behaviour until next Monday. You cannot believe how good that feels. Apparently there could be a bit of a dip in my blood results in weeks six to ten after transplant (so basically August), when the mature cells that were in the transplant mix will have died off and the new stem cells will be called upon to show their mettle, but one of the good things about eating again is that I can take my supplements again. So I am disregarding that particular warning, or at least not giving it due attention, and in the meantime ramping up the nutrition. I am very anxious to get the remaining chemo out of my system, so to that end have been juicing and also taking Active Zeolite, which is supposed to help remove heavy metals and toxins like chemo. I’ve also been skin brushing every day and having Epsom Salts baths. Have you tried them? Amazing. I recommend you try the baths. Add a good mugful of Epsom Salts to the water along with a few drops of a nice essential oil – I use Rose Otto as it smells so delicious – but keep the temperature moderate. The salts make you sweat profusely, then when you get out you need to make a dash for the toilet. Just a warning, but it really does work, and my skin is starting to show its appreciation. It is starting to look a lot healthier, but a reaction to the chemo has also left it darker, so I look really tanned. Result! So I look skinny and tanned and all I had to do was spend 23 days in hospital having noxious drugs pumped into me. See? Always a silver lining!

I find I am very weary of all this now though. Both Stephen and I need a break from it, and although I can’t fly and have to stay out of the sun and can’t tax myself physically and have to be very careful about catching bugs from other people and still have to turn up for appointments, we are squeezing in a little break at the beginning of September, hopefully to the Isle of Wight. We desperately need a change of scenery and none of the triggers around us for what has been going on for the last seven months. Some hair would help the sense of normality, as I am heartily sick of scarves, but I know that is only a matter of time. I really can’t imagine what it will feel like to have hair again, but I am looking forward to the sensation. We should be able to get away for longer, and to more exciting climes, at the end of the year. With hair!

I thought I would be spending this period eagerly researching and adding bits to my blog to make it into a book, as promised, but I am finding I have a curious resistance to doing so. I know, to a certain extent, this is part of my very cardinal, ‘what’s next?’ type of personality; I never checked my work at school, because, having completed it I considered the job to be done and I wanted to move on to something a lot more exciting. That definitely cost me a lot of marks. But there is something more going on here. There is a part of me that has no desire to revisit the upset and trauma of the last seven months, even though I know a lot of the story hasn’t been told. I was inspired at the time and ready to fight for what I felt I needed because I was so incensed that I couldn’t easily get it, or that the knowledge wasn’t readily available. I imagine this is all just a reaction, and the afore-mentioned weariness, to what has been going on, and that probably all I need is to continue resting. Chemo also affects the brain, and whilst I haven’t been as ‘out of it’ as some people are, something has definitely taken the edge of my mental, as well as physical stamina. It isn’t something one would normally think about, but it does take a lot of energy to process thought, which is probably why it has taken me so long to write this blog!

On that note I will retreat to my semi-convalescence, but I will be in touch more as my brain resurfaces!

Wishing you happiness and health

Margaret