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

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About Margaret Cahill

After diagnosis of Mantle Cell Lymphoma in 2013, I started this blog to stay in touch with friends, family, and and an ever increasing network of lovely people who sent me healing. The readership increased and I ended up blogging for all I was worth to try and stay sane through the chemotherapy and stem cell transplant. Then after I went into remission (thankfully) I was enjoying the writing so much that I have carried on, and the blog seems to have become a bit of a resource for people, which is lovely. The original year of blogs have now been made into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma. It fills in a lot of the gaps between the blogs, and the tone falls somewhere between graveyard humour and explicit details of chemo treatments. I do hope you enjoy it :-) Mxx
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12 Responses to 34. The Long Haul Back to Health

  1. matrixdavis says:

    Hi Margaret,

    We are praying that you [along with your brain] resurface soon!

    Love,

    Martin

    Like

  2. Dolores. says:

    Dear Margaret welcome home , so glad you are back and, sickness apart, on the way to being your old self. Sorry I have been remiss in writing but I have been in and out of the island and am now working like a beaver to prepare fo the USA trip in September.

    You have been so brave , coping with all you have been through. I don’t think many people understand exactly what happens when you have to go through chemo.. but your blow by blow account is both horrifying and at the same time an amazing account of what the human baody can take in order to survive.

    I salute you dear for your courage, your determination to win through and your humour throughout.. You are an example to us all.
    much love

    Dolores

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    • Hi Dolores,
      Your energy astounds me – I want some of what you have got!!
      Thank you so much for your kind comments. It has been such a long and intensive haul and we are desperate for a break, but it does feel good to have finally got to the end of the treatment. I am positive the only reason we have made it through is because we have had so much support from everyone. In the darkest times, it is the knowledge that others are sending you love and healing that keeps you going. And for that we are both deeply grateful.
      Big hugs
      Margaret xx

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  3. Mario Reading says:

    Dear Margaret,

    I thought you might be amused by what my consultant said the other day in relation to chemo. “I think we’ll hold back awhile,” he said, “because, as you already found out last time (1992), chemo affects the cognitive functions, and you are a writer, and you need yours.” I was quite impressed, despite myself. So I’m on the vaccine trial instead. Hope I haven’t bought a pig in a poke! Self-injection isn’t all it’s cracked up to be, ha ha…

    Lots of love to you both from Mario

    PS: Your hair will come back looking more beautiful than ever.

    x M

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    • Result! Glad to hear your consultant is so understanding. I really hope the vaccine is the real thing and works- and that it isn’t the placebo. I think you are so brave, injecting yourself – there was no way I could do my GCSF injections, and surprisingly most of the staff said they wouldn’t be able to inject themselves either, which helped to make me feel less of a wimp! More power to you!
      Hoping to make it to writer’s group soon with Stephen. It will be nice to see everyone again.
      Big hugs
      Margaret xx

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  4. Mary Plumb says:

    Wonderful writing as always dear Margaret…keep good care..

    Love,

    Mary

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  5. Bernadette says:

    Eating is good… the long haul back indeed, but just keep rowing that boat … one day at a time xxx

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  6. Sorry I missed sending you birthday wishes. Hope it was a very special day. Your returning good health is the most precious gift. Soon you’ll be able to put this harrowing process behind you…and when you are fully healed, you’ll be ready to decide where to next. Much love Mishxx

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  7. Stephanie says:

    Congratulations Margaret on getting to where you are now. Your courage, determination, intelligence and humour are an example to us all. Yes, there’s always a silver lining! – best way to look at it. You have a new svelte figure (let’s not dwell on how you got it!) and soon you’ll have a new head of hair.

    I hope you and Stephen enjoy your much-needed and well-deserved break on the Isle of Wight.

    Love, light and healing as always

    Stephanie
    xx

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  8. Sue Williams says:

    Well Done You. xxx

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  9. The book you will eventually write will be advice / guidance / counsel / for other people who are facing exactly the situation you faced. Including a bunch of stuff which you haven’t mentioned in these blogs. And it will be a salvation for many, many frightened people.

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    • Hi Bob,
      Stephen and I were just discussing how different it feels now we are at the other end of the treatment. I was originally going to use the name of this blog as the name for the book,when I finally do it, but now I realise I don’t see it as the darkness I did then. Back then I was indeed frightened. Thank you for reminding me of that. Mxx

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