12. Cycle Two – As it Happens

OK – we are at Saturday morning and the tedium has hit. I came in Thursday and we got cracking on the first round, which was about 3 hours, then for yesterday and today I’m having 2 cycles a day of about 3 1/2 hours each. There is quite a lot of fussing around making everything sterile and checking the dosage so although the actual chemo dose is 3 hours the whole thing takes longer than that. Which isn’t so bad if it is all happening in the daytime, but we didn’t get started until nearly 10.00 last night so it didn’t finish until after 1.00 this morning. Thankfully Stephen had bought me the boxed set of Sex and the City, so Carrie and the Girls saw me safely through until the bitter end. I managed to get settled down and asleep by about 1.30 and was having the most amazing dream. I think wonderful dreams are sent sometimes just to give us a break from the less pleasant things we have to go through – a sort of mental holiday. I was sublimely foxtrotting round a ballroom (and yes, I can foxtrot, and it is my favourite dance) with lovely swing music playing and sort of misty edges to the ballroom so it just faded away. I was probably wearing one of those amazing floaty dresses from Strictly Come Dancing, but I can’t remember now because next it was ‘GOOD MORNING! HOW ARE YOU TODAY? CAN I JUST TAKE YOUR BLOOD PRESSURE?’ and my lovely dream was torn asunder. Lights full on, I was dragged kicking and screaming into the reality of Saturday and another day of treatment.

I’ve decided to stop talking about the treatment being toxic as thinking that way creates such a horrible reaction in my body as it goes in. We all know it is extremely toxic and that it burns skin on contact, but the alternative isn’t exactly attractive  either so I am concentrating on visualising the chemicals as a force for good sloshing through my veins. (More of the soldiers later.) It does feel quite weird though and you gradually get a horrible taste in your mouth, which is something I learnt from Cycle 1 can be minimised if you have something to eat or suck while the drip is attached. With this in mind we went out last week to find some lozenges. We headed, somewhat misguidedly as it turns out, for the health food shop, expecting them to have a wider range of additive free fare. How wrong could we be? I don’t understand why the company who manufacture the leading brand of ‘healthy’ lozenges go to all the trouble of growing herbs organically on a Swiss mountain side then adulterate them with sugar and glucose syrup, or in the sugar-free variety, aspartame. If you don’t know the background of those last two, go look them up. One place they shouldn’t be is in food, and I think we can be fairly sure that they aren’t there for our benefit. The only thing we found in the entire shop was Real Fruit Snack Bars, which have – just real fruit puree! What a pleasant surprise! They are flat and moist so are kind of doing the job, but if you do come across something suitable I’d love to know. We are allowed to bring food in, but I already have my big container of fresh juice in the fridge and space is at a premium. It does astound me what the hospital serve up to people who are already ill. Dot offered me yoghurt on my first visit as we searched the menu for sugar and additive free options and she was stunned to find that the ‘healthy’ fruit yoghurt actually had very little fruit or yoghurt in it – the ingredients were mostly corn syrup, guar gum and flavourings. It does make me sad that our food is so adulterated nowadays that I imagine a lot of people couldn’t actually cope with live, natural yoghurt with a bit of real fruit mixed in – not without dumping a load of sugar in it. I’ll just jump off that particular soapbox before it becomes too boring. But do, please, go and read a few labels. It is illuminating reading if nothing else!

I thankfully haven’t had much to do with hospitals in the past, and I hadn’t realised how much of nursing is the daily grind of handing out medication, changing dressings and checking vital signs. I especially hadn’t realised how fascinating and complicated bowel habits are. Joking aside, these are the first sign of something going wrong with a chemo patient so you wouldn’t believe how much detail you have to go into. I take my pink hat off to the fabulous nurses on this particular ward for making these small interactions so much fun, and for really, really caring about doing the best job they can for the patients. The nice thing about coming back to the same ward is that you get to know everyone. Obviously my relationship with Dot is maturing, which is a daily revelation. One of the nurses is getting married soon, and last time I was in here she had planned a day out with her mum and the bridesmaids to track down The Dress, but the bad weather was making it all look distinctly dodgy. I am happy to report that the trip was a success. Another nurse had planned a chocolate-themed birthday party for her daughter, and having had a chocolate fountain at our party a few years ago, with disastrous results,  I was particularly eager to find out how that went and if they do them for adults :-D. It went really well and no they don’t, just so you know.

So, thinking about soldiers and helpful liquid sloshing through my veins, I realise that my attitude and thus my needs are changing. My Mars in Aries has quietened down considerably through this experience and the soldiers don’t need to go storming through my system like they did. This is actually very welcome, as I didn’t really feel it was right for me. Even in the beginning, I didn’t feel that I was ‘fighting’ this cancer. I’ve never done that well with fighting things anyway, and maybe I felt instinctively that I would use all my energy on trying to win the battle and have none left at the end to enjoy life. The happiest and most inspiring people seem to talk about living with cancer and that makes more sense to me. Cancer is now a part of my life, and the spectre of it in the form of regular tests will always be there; we would have a very uncomfortable existence if it was a continually antagonistic relationship. Fighting also doesn’t marry well with the exceptionally beautiful healing I am receiving. In the light of this I am working hard at being kind to myself and my body, as it was the reverse of those conditions that made it sick. To this end I am now seeing the drugs as a positive force gently washing through my system. More thoughts on this theme to follow. I have to admit that today I am a bit bored of the game and want to go home.

The thing I need most is sleep. The first night I was in I was sharing a ward with an older lady who was very uncomfortable and in a lot of pain. Her regular trips to the bathroom were interspersed with periods of snoozing where she was talking in her sleep imploring The Lord to take her. In the wee small hours I had really had enough and went across to ask her if she wanted me to call one of the nurses. To which she replied with a perky’ Oh no, love, don’t you worry about me, I’m fine!’ Grrr. So I spent yesterday in a sleep-deprived state and wasn’t exactly well-armed to be up until 1.00 on the drip. Today is passing in a bit of a headachey fashion as a side effect of the drugs, but this too shall pass. The end is in sight and I will have another 3 weeks to recuperate before the next cycle. With my freshly juice lovingly made by Stephen (with NHS straw!) and an almost endless supply of Sex and the City dvds I’m as happy as I could possibly be in the circumstances.

Have a brilliant weekend.

Margaret xx

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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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7 Responses to 12. Cycle Two – As it Happens

  1. Dolores. says:

    Good morning Margaret, hope today will be a good day for you. I’ have just completed writing the third lesson of the New Main course for SOL and am taking today and tomorrow off to go back to Book Two of The Singing Stones.. entitled The Hill of Dreams. My publisher is getting edgy and muttering about deadlines !!!

    The news is full of Horsemeat / Snow/ and a Gunman being chased by half the Californian police force… very depressing. I’ll lose myself in the world of fiction for a while. Keep hold of your lovely sense of humour dear… we are all rooting for you.

    blessings

    Dolores

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  2. Sue J says:

    Hello dear Margaret,
    I have been waiting for this. Seems my fix is dependent upon your fix! I know. I know; I never could be ‘taken anywhere’ but via the internet I do what comes naturally(!) without stirring from home.
    Firstly I want to say that your line
    ‘maybe I felt instinctively that I would use all my energy on trying to win the battle and have none left at the end to enjoy life.’
    has such resonance here for us. Filtering through our experiences as we do, M & I recognise this (although it has taken you to present it as a fundamental truth – how wise you are ) because much of our lives, post B….has been spent fighting for him. Most caring parents of disabled offspring say the same, and now that we are older, as a group we do seem to be an earnest lot -because we are tired…of fighting?
    I love the photograph of you and Steven happy under your hats, looking expectant (doesn’t that require energy?) and unexpectedly young. No-one(?) looks like that after a battle.
    My friend Marion rang this afternoon, to ask for news of you. She had just seen her friend Margaret ( diagnosed with mantle cell lymphoma four years ago) again and has some more information for you. Margaret now has, to use Marions words,’ a beautiful head of hair; you wouldn’t think she had ever been ill’
    ‘Is it curly?’ I asked .
    ‘No. It’s the same as before, and she says that she is now doing so well, that her next checkup won’t be until a year’s time’
    On this occasion she and Marion had a more detailed conversation on the matter and It appears that Margaret has always been a healthy eater (and doesn’t smoke… doesn’t drink, Marion added) but the one food item that Margaret started taking during her chemo days to help with the side effects and still takes every day, was and is Manuka Honey. Apparently it has to be at least 10 plus.
    Not being an advocate of less is more (with necklaces to prove it) I’d take the view that the absolute maximum is more!
    Another possible ‘gem’ for you has come from a friend presently undergoing chemo. She mentioned the issue of taste and I told her that my father, experiencing chemo thirty seven years ago, said that Oxtail soup and jelly (not together!) managed to counteract the taste. And I found both those items suitable for disguising the mass of vitamins, including vitamin C powder, that I was pumping into him at the time
    My friend.. (J – at least I think it was her. I’m beginning to forget who has told me what! Eventually I can see myself feeding you back your own information)…my friend told me that she sucks dried apricots. I believe her specialist suggested they would do the trick – and they do. As far as I can recall she manages to suck them even when is she has mouth sores.
    Now I will go away and behave myself – you see where battling away your energy will take you?
    Behaving – disgraceful!
    Love Sue xxxxxxx

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  3. Helen Legg says:

    Dear Margaret and Stephen I have spent the afternoon with you and your blog. You have sent dozens of emotions through your writing and I have smiled and cried. You are very special people and I feel blessed to take this journey with you. Put on the music and foxtrot through the treatment, keep strong, lots of love and huge hugs – Helen Xxx

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  4. Sue Williams says:

    Chemo sucks. Hospital sucks. I know how hard it is to think of it as a positive force.

    You can beat this and come out the other side. I am so rooting for you.
    xxx

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    • Hi Sue, thanks so much for this. I think the hardest thing to get your head round is that you have to be made to feel so bad on order to get better. I have a real problem with that sometimes, usually when I am feeling low. Your support is greatly appreciated. x x x

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  5. Caron Rogers says:

    If you weren’t dancing the foxtrot with Stephen, I hope it was Anton and not Brendan or Vincent xxx

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