4. Settling In

With the trauma of my trip to Southampton and Portsmouth rapidly becoming a distant memory I am now writing from my hospital bed; yes, I made it! I never thought I would actually be anxious to get admitted to a cancer ward, but it is strange how a sense of urgency pervades one’s thinking. Knowing that I have an aggressive cancer makes me panic for every moment that it goes untreated, even if that treatment is likely to make me very poorly indeed. Veteran cancer survivors will probably chuckle at my inexperience, but it is very odd to be told that something silent and deadly is growing inside me – which as far as I am concerned didn’t even exist before 11th December. There is something amazing about the human spirit and its capacity for survival; whatever the situation, there is a primal instinct that draws us together in times of danger. We become a clique, a special club. Was it Groucho Marx who said  that he didn’t want to be a member of any club that would have him as a member?  He hadn’t been on a cancer ward. I was welcomed with smiles and kindness by everyone, and I feel very safe. Safe because I will be receiving the best medical care possible (apparently Bournemouth General Hospital is renowned internationally for its cancer care – result!) and safe because here I can be funny and scared by turns as the emotions arise. Scared especially of Dot, who runs the tea trollies and delivery of meals. I know all about tipping points from publishing Bernadette Brady’s ‘Astrology, a place in Chaos’. (See my Book Blog for details.) This formidable four feet 10 inches of bristling humanity rules both staff and patients with an iron fist in an iron glove (make no mistake), and she is the human incarnation of a tipping point. How do I know she is 4 feet 10 inches? Because she is about the same height as my sister-in-law. Maybe a bit smaller. No matter. Yesterday (um…Wednesday I think – completely lost track of time) Dot was in a spectacular mood because the night staff hadn’t been round to change the water jugs before they went off duty. Which they do – oh – around 6 ish if we are lucky.  Apparently it used to be 5.00 until the patients formed a posse, safely armed with plastic spoons, to request just a teeny bit more sleep if that is at possible please if it fits in with the schedule. Well they won that battle but I don’t fancy their chances in winning any war against her. I had an inkling of the sheer force of her personality when she asked if I’d like a cup of coffee on my first afternoon here. ‘Oh yes thank you. I’d love a cup of your very special economy, headache inducing, powdered instant coffee please!’ No, joking. But I did say I’d like a mug of white coffee, no sugar please. At least the drinks stay warmer in a mug. The cups are specially designed for hospitals so that the drink is cold by the time it reaches the recipient. Can’t risk people spilling cups of hot tea over themselves as that would reflect badly on the Health and Safety figures. So Dot wanders back to the trolley repeating ‘black coffee no sugar’ to herself. Have you spotted the difference yet? This would only end in one of two ways. And she would win both of them. She came back with – yes! – a black coffee. I hate black coffee. Maybe I would have to drink it. (She wins.) Was I brave enough to correct her? Nope, I’m a wimp in these situations. (She wins.) So I politely asked if I could have milk after all, and she shuffled back to the trolley muttering that I had asked for black. At least I got out of that one intact! The coffee was grim though….. The whole philosophy of being in hospital is really quite interesting. I’m not ill in the normally accepted sense of needing bed rest and constant care, but a lot of the people in here really are. We get amazing medical attention but there is no peace, no sense of stillness in a busy day, which is what people need in order to get better. I am currently in a two-bedded ward in the isolation unit (because that is all that is available just now). The lovely lady I am sharing with is very sick. She had a blood transfusion yesterday, something she has had about every three weeks for the last two years, because in her form of cancer her own immune system is attacking her body and it is destroying her white blood cells. There is no known cure for her condition, but her consultant is leaving no stone unturned in his quest to find something new that will help. After every transfusion she is exhausted. Even I can see that she is desperately tired and yet she is given no peace. Blood pressure check at 6.15, woken again at 7.00 (and lights turned on. We turn them straight off again!) for a cup of tea she doesn’t really want. Immense hassle this morning at just after 7 when Dot throws a wobbly that nobody has ordered their lunch yet on the in-house system. I did speak up that time as I was really cross. ‘Fifteen patients and nobody has ordered their lunch yet!’ she says. This is about two minutes after the lights have gone on. ‘That’s because we were asleep, Dot’ I bravely venture. ‘Fifteen patients and it has to be in by 9.00!’ ‘That’s because we were asleep, Dot’, working on the broken record basis that something might sink in if I say it often enough. It doesn’t. Breakfast follows at 7.15, more drinks at 8.00 and then the bedding is changed and tablets handed out. A tiny oasis of peace then the doctors come in to do their ward rounds. Then it is time for more blood pressure checks. My lovely and very poorly room mate  has just got back to sleep having told everyone she is having a lazy day (like she needs to make an excuse?) when a student nurse appears to check her weight. There must have been about 20 minutes of blissful silence before the next interruption: the counsellor wanting to check that she is OK after being a bit upset the other day. NO SHE ISN’T. SHE NEEDS TO SLEEP. As a relatively healthy person (I am still convinced I am too well to be sick) I am already exhausted by the relentless interruptions and busy-ness that pervades the hospital. I am typing this as the cleaner is moving my bed around. If I leave this laptop for too long without paying it any attention it goes into sulk mode, so as she said I could stay on the bed I am. Quite fun really, up high with the guard rails out so she can clean underneath. Oh no. She is going to my room mate now, who has just got back to sleep! More soon Mxx

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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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18 Responses to 4. Settling In

  1. Bernadette Brady says:

    Your post reminded me of many years ago I had a month is hospital – I found it exhausting for all the reasons you are talking about. This was back in the 90s and Darrelyn had got me a small laptop – hired it – so I could at least work while stuck in bed. Anyway there was one particular specialist who was most tedious. He would come sailing in with a trail of medical students acting like he was God’s next of kin. So one day he happened to come into my room while I was working on the laptop. So this male ‘god’, clearly upset that a mere woman has a piece of technology that he clear did not yet own, said out loud to his students ‘So are you practicing your typing then?’ As if that is the only reason a woman would need a laptop. Without raising my eyes I simply said ‘No working on my chess openings’ – which was the truth for that particular time. All his students giggled and I could see from the look on his face that a) he felt guilt that he has not practice his for a very very long time and b) by the fixedness of my gaze he knew that I could beat him at chess. Sometimes it is the little things that help one get better!!! BTW with Dot, tell her you like something about her shoes, or hair or something – it will make your tea better :) Hugs from a snowy Bristol

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    • Ah brilliant. Fortunately all the medical staff are lovely and very supportive – but they just don’t give you any peace. It has been non-stop since 5.45 this morning and I am shredded. I have given up trying to have a nap as there is an interruption literally every 15 mins. I have been trying to do a specific chant, for which I need about 20 minutes and some p&q and it just isn’t happening! There is a chance I might go home today in which case I will sleep until about next Tuesday :-)
      Dot is certainly a project.She takes great pride in getting what you have ordered before – like she knows I like hot water to drink in the morning – heaven help me if I change my mind at any point!

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  2. I have just been reading about the incredible health benefits of pomegranate juice! It is a powerful antioxidant and boosts the immune system. Research suggests it is great at fighting cancer and also heart disease and has a whole range of other amazing health benefits. It also made me think about Persephone’s journey to the Underworld. I have been recently learning how to deseed fresh pomegranates, which is not an easy task, as you might imagine. This makes sense, with the symbolism I mean, for it is very difficult to separate the seeds from the pulp… Separation and letting go, being such an intrinsic part of the journey to the Underworld. In light of what you were saying yesterday, about control issues etc., when you get home I recommend you explore the therapeutic benefits of pomegranates, both the ritual of deseeding, and the physical benefits of pomegranate juice! I found that putting the seeds into a teatowel and squeezing the juice out is better than using the electric juicer, releasing much more juice. Fresh is also better than pre-bottled. Much love. Be well. Mishx

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    • Hiya, Many thanks for this. We tried straight pomegranate juice when we were in Istanbul a few months ago. We were seated right next to a mobile unit that pressed the juice while you waited. There was at least a pint of it and it was completely fresh and unsweetened. Having tasted the stuff in the shops I was expecting a different experience but not quite as extreme as this! I took a brilliant video on my phone of us both drinking it, which I am going to try to upload just for the laughs.. Sucking lemons doesn’t even come close! Do you drink it straight?!! I would never add sugar but I wonder if there is another juice that would take the tartness away a bit. We are doing loads of organic juicing at home. Stephen has been bringing me supplies of juiced carrots, celery, spinach, curly kale and beetroot. Classic cancer care stuff which has all the nurses interested. And Dot :-)
      I always loved pomegranates as a kid, so thank you for that – I look forward to experimenting.
      Mxx

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      • Perhaps try it with carrot or apple to add sweetness, but I don’t mind it straight. It zings! Beetroot is great too. There is something innately powerful about the red juices. Great that Stephen is bringing you fresh juice. Perfect!

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    • Hiya, just heard another interesting thing. A nutritionist and cancer survivor who is helping me with my diet also recommended pomegranate juice, which apparently goes well with whey protein isolate – something I need to take to help build me up for the next cycle. I take it as a very positive sign when ideas from the different areas but with the same eventual focus fit together as they will work more synergistically. Let’s hope the taste reflects that!

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      • Isn’t synergy and synchronisity an utterly amazing thing?! It always astounds me when it happens, and I don’t know about you, but it seems to be happening more and more frequently of late. Hope you are managing to get your head (and body) around the after effects of treatment.

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  3. Judy Hall says:

    Someone up there definitely has a sense of humour: I dont know whether you’re aware of it but underneath your ‘Just a Quickie’ post there’s an ad for keeping up to date with the work of Bill Clinton. I bet he could tell you what a dongle is. In settling in you missed out the story about Dot and the dry white wine on Sundays. Do share it with everyone.
    xxJ

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  4. My goodness, when I keep (kept) my hospital diaries they were really diaries – we had no blogs then. And now I’m just in the habit of keeping hand-written diaries. I think blogging from the hospital is a brilliant idea, and your blogs are excellent. And you are 100% right, Margaret, to remind them all that you are a person and not a number! The few times I have ever really gotten (sic) angry in hospital are when they forget that – I remember lecturing a whole roomful of French interns once about just this. Anyway, I’m really glad my note was a help. I’m off myself to the Royal Marsden soon (they’re going to experiment on me with a new trial drug which I fear may turn me green or something similar). Remember this: everyone will tell you you are sick. But if you don’t feel sick, then you AREN’T sick!! Then they can do what they want and it can’t touch you. And now I’m going to say something that is going to sound a little daft. But try to love your cancer. It is an integral part of you, and is not something you must fight. You will only exhaust yourself. Love it. Accept it. And then, with a little luck, it might clear the hell off out!!!

    xx Mario

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    • Hi Mario,
      Thank you for your kind comments – they mean a lot coming from you. It is odd that I don’t feel the need to fight the cancer. My dear Swamiji reminded me that the way to freedom is through acceptance – if you fight something there will always be the threat of a battle that may well be lost, and as you say it is exhausting. I feel I need all my strength to move through this in ways which are only revealed to me on a moment by moment basis. I am sure you know that one. I would love to chat to you when I get out. Should be coming home tomorrow so when I have slept the sleep of the sleepy I’ll get your details from Stephen.
      Big hugs
      Margaret

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      • Excellent – please get in touch. I would love it. And my strong advice is to drink that Chardonnay now. Because in a week or two you won’t be able to stomach the smell of it. Or coffee. Or….I won’t go on. But make hay while the sun shines, is my advice. The good news is that it all passes away eventually and goes back to something approaching normal…

        Abrazos
        Mario

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  5. Reina James says:

    You seem to be next to me here, talking! I can really hear your voice and see the ward and dear Dot. (I’m with Bernadette here – you could enjoy winning her round in whatever way lies open).
    We’re thinking of you, in your wellness, dancing gorgeously on some lovely shiny floor. And also trying to get a moment’s peace…
    Love and hugs from us to you and Stephen, xxxx R&M

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  6. Sue J says:

    Oh I just lost my message. Am so untechnical. I endorse everything you say about sleep. I recently spent 30 non-stop hours in hospital as a visitor, and it seemed to me then that even through the night the patients had very little peace. Most of the time, when I wasn’t banished from procedures I sat holding my friends hand, but it makes one realise what a nuisance we visitors might be. I remember shortly after I had returned home with our new born son that the door bell and the phone didnt stop ringing. – no ansaphones in those long ago days. I was exhausted, – ‘How are you Sue?’, kind people, good friends, would ask.
    I don’t remember what I said, only what I wanted to say, at that time, and of course didn’t ..’I’d be fine if only you would all stop asking me how I am, and leave me alone!’
    So dear Margaret I don’t need an individual reply ;this blog idea is so good- you write when you like; it’s all here for us to pick up when we can, and for us to write in return – in my case today after Midnight; – and one way or another I am learning and confronting a lot – and you make me laugh! I loved your piece about a posse of patients with plastic spoons.
    Love Sue xxx.

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  7. Poppy Sachs says:

    Hi Margaret,
    I hope you, and Stephen of course, have had a chance to relax this weekend, sounds like you’ve had an extremely hectic week! I’ve just read through all of your blog entries (a welcome break from my rationalism essay) I have been both touched and entertained by your words, what a wonderful idea!
    Such a shame Matt’s poorly, I know how desperate he is to visit you, and almost as desperate to cook for you.
    I look forward to your next entry and as for the pomegranate dilema, it’s beautiful with orange juice! Also Sainsbury’s do a lovely cranberry, raspberry and echinacea tea, I shall have to bring you some next time I venture back to Highcliffe.
    Lots of love, Poppy xx

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    • Hi Poppy,
      Many thanks for this. We miss Matt very much-it is far too quiet without him and his crazy humour and I am hoping we will see him tonight but the weather is pretty awful out there. I am glad the blog gives you a break from your studies. It started as a way of keeping in touch with people but it seems to have turned into something more. I am grateful for the chance to explore my inner wanderings amongst such support and friendship. Haven’t tried that particular brand of tea, so thank you, it would be very welcome! We look forward to seeing you next time you are home. Big hugs, Margaret x

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