26. Steroid Heaven

Didn’t expect to see that title for Cycle Five, did you, huh? The totally excellent thing about Cycles One, Three and Five is that for reasons I can’t remember due to chemo brain (an excuse I find I am resorting to a lot now) I am given 5 days of very high steroid treatment immediately after it. A bit like after childbirth where the (supposedly) wonderful event of producing the child blanks out the pain blah, blah, blah (sorry but it didn’t work that way for me), so do the highs of steroid heaven make you forget the horrors of the chemo. So just before I completely forget I want to tell you it was just as awful as before only slightly more so. I would say that ignorance is a wonderful thing when it comes to chemo, because as the cycles go on, your mind, and thus your body start to act in a similar way as your pet does when it knows it is going to the vets. You only have to get the pet carrier out and They Know. And it is also like the game ‘I went to the shop and I bought’. Uh huh. Your body knows exactly what it bought last time and it has no intention of going back for more. On Cycle One I was all gung-ho, wide eyed and ‘Let’s get on with it chaps’ at which the nurses smiled winningly, knowing how it would all change later down the line. A horrible experience to be sure, but no sickness. A lot of tiredness and discontent at how long it all took, but pretty good considering. Cycle Three took even longer = even more grumpy plus violent sickness. The morning of Cycle Five came and without any conscious intention from me whatsoever, my body had backed into the furthest corner from the pet carrier. I dragged it unwillingly to the hospital, and would you believe it, despite all attempts to the contrary my chemo wasn’t ready so we STILL couldn’t get started early. This cycle has lots of different components and the last part is three sessions of a wonderful drug called Mesna which is to protect your bladder and kidneys from the searingly destructive effects of the rest of the chemo. These doses have to be given three hours apart with a saline flush in between, so with that plus all the other stuff it is a horribly long day. However, this time I had secret information which would help me avoid an overnight stay and thus an even longer incarceration. It was a little confusing, but it did work out in the end, with quite a lot of added benefits. I went in as a day patient, which theoretically meant I should have been in Ward 10, which is nice and bright and busy and I love it there. However, there wasn’t any space on Ward 10 so I was booked into a bed on Ward 11 but with my own nurse, one of the stem cell transplant team – she was available as there was no transplanting to be done that day. I don’t really like Ward 11 much as by contrast it is quiet, cold and airless in that very special way that only double-cycled air conditioning can create. Imagine my surprise when I was shepherded not to my usual and much-hated Iso 2 bed, but whisked through another door to the stem cell transplant suites. Wow. Never knew about those!

I was shown down this secret corridor, that I swear never existed before, into a room that has its own bathroom, fridge, television, dvd and cd player, exercise bike, steps for more exercise and windows that look over a grassy area and that appear to OPEN. Oh and a huge squishy chair that reclines and has a fancy footrest that comes up too. Premier Inns eat your heart out. The chemo did eventually get started and I settled into my des res ready for the Long Day. Several advantages almost immediately presented themselves and my rather wobbly and indecisive attitude to the transplant started to become slightly more positive. This magical Harry Potteresque corridor seems to house a few cupboards and fridges itself, which equals gatherings of people which equals gossip. The very first thing I learnt was the lady in the next door suite had asked if she could please not have scrambled eggs on toast for breakfast tomorrow. This was a conversation between the nurse and Dot, who said she would check with the dietician. What? Is there more to life than Readibrek á la NHS? I thought I would check the outcome of this little revelation with my chemo nurse at a suitable point. Dot goes to these cupboards a lot so she also came in to chat a lot, always a bonus. She offered me a cup of tea and as I had forgotten my stash from home I asked if she had any herbal tea. She didn’t but managed to snaffle some green tea from the staff cupboard which is also there. How handy is that?!

When my designated chemo nurse came in we got talking about such  breakfasts and in the process I found out that on Day One of the transplant schedule I have a chat with the Dietician. Oh Goody. I really cannot wait to see what the NHS idea is of a good healthy diet to recover from the five intensive days of chemo that is required pre-stem cell transplant. Apparently it is her say-so as to whether I can have a cooked breakfast and other goodies, so I hope she has set aside a gooooooood long time for a chat. She can also ‘advise’ about supplements and vitamins, so anything I can get on the NHS instead of taking out a small mortgage for at the health food shop would be good, but on the other hand it had better BE good – none of your replicant Big Pharma ideas of vitamins and supplements. I am so excited. Do you think she will be ready for a frank and open discussion about the benefits of Aloe Vera Juice in preventing nausea, plus the effects of all the other stuff I am taking? I do hope so. Because, you see, my nurse and I continued to have a very enlightening discussion that included the benefits of yoga, meditation, and especially the fact that due to the exceptionally fine advice I was given right at the beginning (thank you Swamiji and Manisha), the Vitamin A drops have completely stopped me having any of the mouth problems associated with chemo, as has the linseed tea prevented any buildup at the – erm – other end. Something which is apparently also an issue judging by the huge amount of bottles and pills I was sent home with to deal with the problem. I know, from what she said, that my case is exceptional, so THIS STUFF WORKS. Anything I can do to see this information included in advice given out to future patients would be absolutely wonderful. So, I am afraid the Dietician is in for quite a session because if she even starts to try and utter that phrase about the science not supporting it she is going to be in trouble.

All of this was very stimulating and very exciting. I also found out the answer to my stem cell question before I made a fool of myself in front of my (wonderful) consultant. The stem cells taken off at harvesting time are wee babies which haven’t become red, white, lymph or anything yet. They are pure as the driven snow and their only mission is to imbed themselves in the bone marrow and thus create a new me. Totally, from what I gather, as every other cell will be totally annihilated during the preceding five days of chemo. Apparently only mature cells can become cancerous – although I am going to check this at my appointment on Monday – which is why it is safe to put back the stem cells. All very incredible really.

None of which detracts from how horrible Cycle Five was. It was exceedingly long drawn out for the reasons stated above, and we finally got finished at 10.30pm. Which is a whole lot better than either 12.30am or 3.30am, as it was before, but it did involve me being violently sick again at the end and repeating the hamster look-alike act. This time I didn’t say anything about it as I knew it would delay us even further. The nurse discharging me did ask if I was very tired and I just said I was and slunk out the door. Probably a bit naughty, but my need to get home was pretty intense by that time. When we did get home I collapsed into a pretty blissful and uninterrupted sleep which I would never in a million years have got in hospital – and felt a lot better for it. Except for my face of course. My eyes were swollen so much I could hardly see out of them and my chin and neck had become one solid pillar of flesh. Lunchtime approached and I finally called the ward to check it out – previously they gave me anti-histamines for it so I wouldn’t have minded going back in for a shot of that. The lovely doctor just suggested I stay at home and take paracetamol as it would probably go down on its own. And indeed it did. So today I am high on steroids and feeling fine. I’m so sorry if this blog has tired you out. I realise there is quite a belt of energy in it which probably means that I need to slow down and take it easy tomorrow. Unlikely, but I will do my best.

Wishing you a splendid weekend wherever you are!

Margaret xxx

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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 26. Steroid Heaven

  1. Sue J says:

    Sorry Margaret, I know you have been suffering – yes; aspects of your experiences only just escape the x cert – but I loved this piece, all of it and the pet analogy – just brilliant …then your secret info…We have the illusion that you keep few secrets from us. So will you reveal that, later, when your informant cannot so easily be identified? And the ‘Paradise Suite’ how good it was to read about that.
    Again but not boring, not ever, comes your mission statement about the importance of quality food and sleep; like me, other readers will be with you, grateful that you are back home to experience nourishment from both.
    Good night,
    Lots of love to nestle in
    Sue xxx

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    • Well the blog swallowed my first reply so you are not alone in your troubles!! Now…what did I say..? Firstly thanks for your lovely comments. I have an awful lot more nearly x-rated stuff that will go in the book!
      I think this battle is as physical as it is psychological and the medical staff are a huge part of both. Yoga Nurse spending so much time with me helped to validate and strengthen my own feelings on less conventional approaches so I am sure this will add fuel to my already fiery feelings when it comes to my time with the dietician. It would be tremendous if she is open and already on my side. And all the other stars of the show? I will in due course find out if they are happy to be named. Out of sheer respect for the fantastic jobs they do I wouldn’t dream of casing them any distress, but names or some form of identity will be revealed at some point :-)
      Now to nestle down into Friday night!
      Mxx

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  2. Helen Legg says:

    Wow Margaret what energy, and a book in the making?? you’ll be so busy :)) I think you’ll need to sort me and my diet out, I may not like it but it will have to be done!

    have a restful weekend lots of love, Helen

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  3. Awesome blog! Loving it!

    Like

  4. Bess Kytzer says:

    Hey awesome blog, just thinking what spam program you use for reviews due to the fact i get lots on my blogging site. Can you please let me know here, so that not only I but other followers can put it on our personal blogs as well.

    Like

    • It’s part of the WordPress package so I haven’t done anything to make it happen. It does seem to do a good job though as I am getting an increasing number of spam mails. It just dumps them in a folder for me to check when I’m ready. Hope that helps!

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  5. Iris Horsey says:

    “Science” can be very irritating by disallowing anything that it hasn’t looked into as being possibly existing. I find that very arrogant and, indeed, infuriating. That kind of thing is not allowed in the face of the law, in fact. Ignorance is no excuse in front of the law……..

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