11. Countdown to Cycle 2

Just 2 days to go until I’m back in hospital to start Cycle 2, and I’m beginning to feel like an old-timer :-). At least I know what to take in with me now as having your own things around you really helps. It sounds a bit like the game I used to play with my sons, I went on a Picnic and I Took….So this is, I Went into Hospital and I Took: a duvet in a bright pink cover (they really don’t have blankets, more like thick sheets which don’t keep you warm), my own (pink) towels (theirs are horrible and scratchy), my own mug – pink, obviously (no more negotiations about tiny green cup or tiny white mug for me!), apples (they aren’t big on fruit in there), tea bags (herbal tea also isn’t on the menu), black and pink cat slippers (a present from Stephen and they make everyone chuckle which is lovely), and obvious things like the iPod, Kindle, proper books and laptop. I’d really love to take the cafetiere too but apart from the fact I’m probably not allowed near a kettle for health and safety reasons, there is a real danger I’d end up competing with Dot and that would be a really Bad Thing. In short I need a train of Sherpas following me into the ward, but it has to be done.

And clothes. I like to get up and dressed every day as I don’t feel I represent myself very well when clad in fluffy pyjamas (usually pink) and you never know when you might have to have a serious conversation with the consultant. Honestly though, things like that do matter. It is really hard to fully participate in a ward round with a whole bunch of medical people around your bed and retain any sense of posture when they are in day clothes and you aren’t. Especially as I want to talk to them about drug trials. Although the staff get you to sign consent forms and tell you all about the treatment you will be having and encourage you to ask questions, they don’t REALLY want you to ask big questions like, do I really have to take this? Or anything that veers away from the straight and narrow. The understanding is very much that they have the answers and you go in there to be treated and not ask serious questions.  I don’t deny for a moment that they most probably do have the answers and I am reliant on them to get well. However, I do need to be asking some questions. It seems there are two new drugs being trialled in the US and Germany which are proving to be effective, and with a lot less toxicity. At the moment they are only being used on people who have relapsed after a complete cycle of chemo and for whom it won’t work a second time. I can understand those patients being a priority, but I would also like to see whether I can get my name put forward if there are trials on new cases. I mentioned a few blogs back that Mantle Cell Lymphoma is on the increase, which from my point of view is good news as more research is being directed at understanding and treating it, and it seems that for the first time there may actually be a cure on the horizon.

Hospital does really weird things to your thought processes and I can see how easy it would be to become institutionalised. As someone said to me, you go in there and are not expected to do anything in return. In fact there isn’t anything you can do as it is all set up to look after you and to not expect anything back, even if you are completely able-bodied a lot of the time, like in the cancer ward. That could be quite an attractive short-term proposition if it wasn’t for the food. I jest of course. You could theoretically spend the whole day looking at the wall and nobody would do much to stop you, and that is incredibly bad for the spirit, especially as the hospital got massive discount on that horrible eau de nils green colour. We are allowed to drag our drips around even as far as the shop, so I might do that just for a change of scenery and for a laugh at some point, although I do take a lot of things in to help keep boredom at bay. Something I am really enjoying is Zentangle. Have you heard of it? Stephen had a review copy of a Zentangle book come into the office and I was immediately hooked. I really am not in the slightest bit artistic. Even my stick men don’t look like stick men and pre-school children can turn out far better paintings than I. This has always frustrated me as the yearning was there but the talent clearly wasn’t. Look it up – it is meditation and art in partnership. It is in fact the kind of doodles we all did at school except with a posh name and a whole lot of marketing and money behind it – but one little book and you are away. I’ll put one of mine up when I can take a decent picture. But I have to say you can get lost in it for hours, which is a very useful thing for hospital stays, and it really does free your mind. You build it up one tiny section at a time with the end result being something really quite impressive. Then you look at it and think ‘Wow, I really can draw!’. Of course I still can’t draw, but it looks nice and it is very good for the soul.

I did of course miss something off the list – hats. Readers of the last blog will realise I now have a splendid selection of headwear to choose from, which is just as well as my head really does get cold now. I didn’t realise how much my hair was keeping me warm! I’ve had a few days now of decreasing coverage – once we shaved it all off it was easier to manage, but even the tiny little bits are falling out now and soon I will be as bald and shiny as an archetypal little alien. Not a teeny hair in sight. So I will need hats in hospital. Judy came to see us on Saturday and as well as bringing a ton of pomegranates and dragon fruit (more of that in a moment) she also took photos of me and Stephen in a couple of the hats for your delectation and delight. Stephen was game enough to wear a fetching black and pink number. I know it is important for partners to be supportive but I think he excelled himself on this occasion!

hats and dragon fruit 012          hats and dragon fruit 001

Dragon fruit, known also as Pitaya, is apparently packed with antioxidants and Vitamin C and the tiny seeds are rich in Omega 3. It tastes a bit like kiwi fruit but it is a lot more exciting to look at. The outside is brilliantly red and exotic, while the inside resembles weird grey fleckled polystyrene. Would certainly get the conversation going around the dining room table! Many thanks to Morrisons and Judy for supplying us with it. I could also have taken some pictures of the kitchen after we juiced some of the pomegranates. It honestly looked like the Chainsaw Massacre. Those little bits of pomegranate fruit really don’t want to come out, and to turn them into juice is truly a labour of love. Michele suggested in a comment on an earlier blog that I embrace the myth of Persephone and her trip to the Underworld as a meditative approach to the process. I think I might need that to stay calm!

So tomorrow I visit the lovely people on Ward 10 for more bloodletting and a pre-admission check then its all systems go on Thursday. I would imagine I’ll be back with a blog around Saturday when the tedium of being attached to a drip is really beginning to wear a bit thin. I’ll be sending your regards to Dot :-)

Good night

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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18 Responses to 11. Countdown to Cycle 2

  1. Neil says:

    Love the photos!! Great to hear your new update. I think we all need to come in and repaint the ward, something inspiring and healing! My partner’s father is visiting the City of Hope out here in California, set up for Cancer treatments etc. He is trying a new shot which is experimental, I’ll get more info on that. There are a lot of options and possibilities these days which is great news. You got me curious about dragon fruit now, so I’ll have to explore that. For an astrologer, it’s ironic I’m not a fan of Star Fruit! Hope you get a ’10’ on Ward 10, and keep up the great work doing much less than you’d like to, that in itself is a great achievement! Beaming Love right to ya! Neil xx

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  2. Sue J says:

    I love all these interesting social details. Most noticeably that you feel at a disadvantage when, dressed in night clothes, you are speaking to the Medics. That is such an insight; Jane Austen would have loved it .Not too many of your present experiences appeal – but the idea of slomaching around,not dressed, as such, on the face of it sounds glorious to me. As does having nothing to do but follow one’s own inclinations (limited, granted) while feeling sufficiently Ok to benefit from that freedom. But until reading your account I had always associated this ‘freedom’ from other people’s expectations ( I do mean that) with being snowed in or with a ‘nice little illness – unmemorable and of not much more than a weeks duration, always, always in one’s home.
    Yes! I can see that there is a vast untapped market for relaxing in-hospital wear with visual gravitas – and I am being serious. Pinstriped pyjamas (or night dress) with matching matte, smooth smart dressing gown, and sombre slip-on slippers garnished with permanently tied laces?. Your fluffy kitten slippers won’t do. A fusion of Bed and Board Meeting that’s what’s required. Facetious now but you have pointed up a truth.
    Ester’s daughter is studying fashion; perhaps we can get her on to this.
    Love Sue xxx

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    • Oh you are brilliant :-) The whole nightclothes scenario came, I think, from those dreams/nightmares one has from time to time (or is it just me?!) where you are in the high street or at a meeting, or, as I once remember, walking through a really swanky hotel lobby, when you suddenly realise you have no clothes on and everyone else is fully dressed. One of those classic lack of confidence dreams. I like to think the sheer amount of pink will intimidate them. They do laugh, which is always a bit of an ice-breaker, and they were looking through all my Zentangle stuff last time, so I do like to give them something to talk while they are doing ward rounds. However I think your idea for business-inpatient wear is amazing and a real possibility. Thank you for your ongoing comments. I love them!
      Mxx

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  3. Dolores. says:

    Dear Margaret
    Your words fill me with admiration, you have such strength and lightness of spirit. You have a solid group of well wishers behind you dear. Our aim is to see you back where you belong healthy and vigorous. Wish I could wave a magic wand over you. love, and blessibgs

    Dolores

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  4. Judy says:

    Hi Margaret, Greetings from Luxor. Your photo in the pink hat went to Karnak yesterday. W’ll email you the photo of it sitting on a very large scarab the symbol of the light that becomes” out of the darkness”. The transforming quality of light. We had to walk 7 times anti’clockwise around the scarab to bring you look and healing. One other person was walking clockwise-must have been dyspraxic! Good luck for Thursday. Don’t forget the feathers! Hugs and love, Judy

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  5. Stephanie says:

    Good luck with Cycle 2 Margaret. Think you’re handling it all brilliantly.

    Love & Light

    Stephanie
    xx

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  6. Kris Brandt Riske says:

    Simply smashing – both of you!!! All our good wishes, thoughts, and many, many hugs for the next round. Maybe you could take a bucket of pink paint along and redo the walls to relieve the boredom :) xoxo

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  7. Fei Cochrane says:

    Hi Margaret,

    I always think about you and I look forward to receiving this message from you. It makes me part of your journey and be part of your family.

    You and Stephen look great. You look so beautiful with your hat ;-)

    Your courage, perseveirance, and fearlessness inspire me. I am sure it also inspires everyone around you. I also would like to acknowledge Stephen for his strength and his hard work to give you the best love and support. Keep up the good work, stay strong. You are always part of my prayers. Thank you for keeping us posted.

    Love and Blessings, Fei

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    • Thank you so much Fei. I just got Stephen to read your message and he sends thanks too. I could not do any of this without him – he is absolutely my tower of strength.
      Big hugs for your kind thoughts from both of us!
      Margaret and Stephen xx

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  8. shrapnel77 says:

    Hi Margret, Love the photos of You and Stephen adorned with tea cozies… You could almost join the rasta club… dancing around the club to a little Bob Marley may be just the thing. Keep your chin up and good to see that the enthusiasm and love of life is as strong as ever. Hearts and minds with you.

    Anthony & Katrin
    xxx

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  9. Judy says:

    Hi Margaret,

    There have been some wonderful synchronicities as we float on the Nile. Knowing how you miss the sun in winter, I had put your picture with the Wind over Wave hieroglyph (which looks like the Aquarius glyph) alongside to send the energy gently to you. ‘Bridge over Troubled Water’ floated out of the boat’s sound system. I am learning not to do anything – just hold the intention and let go. Helped by Normandi Ellis – for which blessings to Stephen. She is the perfect companion for the trip (see below).

    Then your photo went to Kom Ombo healing temple and was on the Sobek (crocodile) and the Horus altars – death and rebirth. The only dual temple – two entrances – Gemini – for balancing the dualities. Horus takes things from stasis to the next cycle of creation. Seems appropriate! I had an interesting encounter with a statue of Sobek in which the god was definitely still residing. He offers you protection but the rest will have to be conveyed privately. When we arrived at Kom Ombo I was reading Imagining the World into Existence. Normandi said:
    ‘The power of conscious creation lies in one’s ability to hold the tension between opposing desires of thought. Life is not a straight line. It is a tide that goes in and out. We walk because we have learned to balance the oppositions of right and left appendages. Change and motion are perhaps the only true constant in the universe… Imagine that the space between your every breath is that moment of Zep Tepi (the first time). Every heartbeat can be that new beginning (regenesis)! That seemed to fit rather neatly into your earlier philosophical musings.
    Hold the balance!
    Much love Judy.

    PS: We had a double sunset tonight. Ra set and rose again in the West. Resurrection! Yeah!

    PPS. Photos being emailed separately as can’t post direct.

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  10. Judy says:

    Hi Margaret,

    Well, we are now in Philae, the temple at Aswan the beautiful. You have been on the altar of the holy of holies of Isis (the Moon) and then wrapped in the arms of Hator (Venus).
    Moving on, the walk to the Nubian Museum yielded huge quantities of Golden Healer Quartz (more of that later) Tore bedded the Napta Playa stone circle into its new home while Terrie and I moved some souls on in the museum. We were told emphatically you would not be joining the ancient mummies.

    After dinner the stones I’d left soaking in my bath had been laid out by Mohammed, who looks after my cabin, into a golden healer mandala for you. This morning he made a monkey from the bedspread (looked more like ET!) and hung it from the ceiling over the mandala. Not sure what that said but I hope the fun reached you.

    We then decided you’d be templed out so we bought you for a very civilised chill on the terrace of the Old Cataract Hotel. Fantastic coffee for me and Terrie is drinking a cocktail for you. Your Sunday night drink was on our minds. Terrie chose a Capiriha which she says is exquisite.

    Cachan Caphina I quote “The slaves to drink the sugar car with lime. You don’t feel its power.”
    We thought you might prefer a ‘Good Mother: A ladies cocktail which Balance Powerful of Vodka and Amoretto Sweetness’
    Or how about a ‘Mocktail of Pussy Foot Johnson, Apostle of Prohibition. It is an Energic Cocktail’.

    Patricia is kindly typing this on Tore’s laptop for me and no, those aren’t typos!

    We hope you’re enjoying your trip in the sun, and the energy is reaching you. From darkness into light!

    Tomorrow, Horus regeneration at Edfu so your soul can soar!
    xxJudy
    PS Photos will follow.

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  11. suzanne hancock says:

    Yes you are very good at foxtrot once you mastered those heel turns.if anyone doesn’t believe you then you say i said so

    love your blog. I catch up frequently
    pink looks good on Stephen too. Love Suzanne
    xxxxxx

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  12. Caron Rogers says:

    You look amazing in the beautiful pink hat with the feather, definitely a keeper to wear either with or without hair Cx

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  13. Caron Rogers says:

    P.S. Were they Pink Lady apples? Cx

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