22. Are We Nearly There Yet?

Now I’m safely on the other side of Cycle 4 I can look back at the highs and the lows with a bit of perspective. You might be wondering how there can possibly be any ‘highs’ to chemotherapy. I would previously have questioned the sanity of anyone claiming such but I am amazed on a daily basis at the revelations that come my way. The first bit of good news is that I had Day 1, the Rituximab, which only takes about an hour and a half, as a day patient on Ward 10, so was able to go home straight afterwards. Result! I went back in for Days 2 and 3 suitably equipped with Fenella, food supplies and duvet feeling slightly higher in spirits at the prospect of only two nights in hospital.

As an inveterate people-watcher, you can imagine how this experience is giving me SO much food for thought. For the first time, I was in the four-bedded ward right opposite the nursing station, and although I was moved later in the day and thus didn’t have to experience the snuffles and moans of night-time, I loved it. In this cycle I am on the drip from 9am-12pm then 9pm-12am for two days, so have nine hours in between to kick my heels and generally wander around making a nuisance of myself. On this occasion, on Day 2 I went down to the ‘coffee’ bar (I use that term more of a description of the place rather than the quality of beverage served of course) and sat reading my paper and trying to drink the coffee. Close friends know that Stephen and I like our cafetière coffee. We don’t have a lot, but by heavens, what we do have is stunning, and to be honest nothing in any of the coffee shops begins to compare. So having a cup of coffee outside is more of a little thing to do to either rest from the rigours of shopping or, in this case, get off the ward. Needless to say, the coffee wasn’t good enough to linger over, and having read my paper then exhausted the magazine shelves of the in-house W.H. Smith I soon found myself back on Ward 11. The three other ladies in my ward were in quite a bad way and needed a lot of nursing care. My previous incarcerations have always been in twin bedded or single rooms, so this is the first time I have seen hands-on nursing on a grand scale, and here it was at its best. The NHS comes under a lot of fire in some areas, but, as I have pointed out before, the standard of care on Ward 11 is unbelievable. In the case of these three ladies the attention they needed was akin to a care home: in the space of a couple of hours the nurses had given two of them a bed bath, and the remaining lady a shower, hairwash, blowdry and a touch of makeup so she looked pretty for her husband’s visit. I was touched to my core at the simple yet meaningful attention which had nothing to do with the training and technical ability of these highly trained nurses. The most seriously ill lady, Flo, was having severe breathing problems and she was put on oxygen and moved to a quieter area with all the love and respect you would wish for your nearest and dearest. I fear she is not long for this world.

You can imagine all of this made me feel even more of a fraud and a misfit. Where on earth do I fit into this world of sick people? When they moved me to Iso 2 to make room for all the male patients to move to the four-bedded bay I joyfully helped push my bed and accompanying paraphernalia along the corridor – a fact which didn’t escape the attention of the nurses. Cycle 2 (and thus Cycle 4) is like this though; the short dose of Rituximab doesn’t seem to affect me much, and neither does the first three hour dose of Cytarabine. I think this is because after the morning dose I can wander around and the toxins work their way naturally out of my system. Alas it is a very different story after the night-time dose, which I have concluded just hangs around overnight, then at 8 in the morning I am being prepped for the next one so it feels a lot more like six hours straight. That is when I start to feel toxic and bad, and the bounciness of the previous day starts to become a distant memory. I nominated this as a ‘duvet day’ because I literally couldn’t face moving. The nine hour gap between morning and evening treatments on this day has a completely different feeling, and I start to feel like Jekyll and Hyde. Yesterday I was all happy and bouncy and found time to talk to the other patients who couldn’t believe I am actually ill. I think they thought I was some undercover agent with a different mission from their own. But make no mistake, on Day 3 all was not well, and I know there will be comments about this, but in a way I hate myself for this change. Why can’t I summon the resources to chase this stuff through my system in a timely fashion so I feel better? I don’t know. I am surrounded by tools that will help; I have good food in the fridge (with Dot’s blessing!), motivational and meditative music on my iPod, amazing books to read and I can’t rouse myself to do any of it. It feels horrible. I spend the entire nine hours alternately dozing and feeling like I want to die, and the worse thing is I know I have another dose to face later the same day. I have to confess I spent most of that day, during my more awake moments, wondering if and how I could negotiate my way out of the final evening dose. Fortunately the opportunity didn’t arise for me to beg to be let off, as I am sure I would have embarrassed myself. Later that same day when I was feeling horribly sick I decided the natural remedy was a lot better for my body than yet another dose of anti-nausea drugs, so like every good ex-anorexic I went to the bathroom and helped my body to evacuate some of the toxins. I did feel a whole lot better afterwards, and fortunately my face didn’t take on the features of a hamster this time, which is just as well as the same Unfavourite Nurse who ignored my symptoms before was on duty.

So….I was moved into Iso 2, which is a twin-bedded ward. My last experience in there was horrible so I have tried very hard not to end up there again. My last roommate left the door open when she went to the bathroom, and didn’t once flush the toilet or wash her hands. It was revolting and the nurses were horrified when I told them afterwards. When they wanted me to move to Iso 2 this time they promised that the lady sharing was lovely and that I could even choose which bed I wanted to help soften the blow. Dorothy was indeed truly wonderful. One of those light and gentle beings you feel blessed to have met. She suffered her first bout of cancer about three years ago and was treated on a trial with a new drug. Last year the cancer returned in another more aggressive form, and because of the damage caused to her bone marrow by the first lot of chemo there isn’t anything she can be given, so she is on palliative care only. Stories like this horrify me and are a huge part of my reticence for originally wanting to opt out of chemo. It is fine looking at all the figures and assuming that the bad side effects won’t affect you, but when you meet someone who is one of those statistics it is truly shocking. Dorothy was brought in because she had woken up that morning in incredible pain. When you are a chemo/cancer patient Ward 11 is always the first port of call, regardless of the problem. The up side of this is the fabulous care, the down side being that they are cancer experts not any-other-part-of-the-body specialists. The first day was spent with her lovely husband by her side and an endless stream of blood tests and an attempt to get her pain under control. What a brave lady. The nurses always ask, ‘On a scale of 0-10 where 10 is the worst pain in your life, where would you place your pain at the moment?’ Judging by what I heard from my side of the room, I would have gone straight for 10, in a ‘put me out of it until you have found the problem’ kind of way, but no, Dorothy went for a reasonably painful 7. What was she thinking?! I can only think she wasn’t really thinking at all or she would surely have gone higher. She even found time to have some gentle conversation with me and to show sympathy for my symptoms, something I found astonishing and almost angelic.

My evening dose arrived bang on time and as there had been no plea bargaining I just had to get on with it, much like the rest of chemo really. Unfavourite Nurse was on night duty, which made my heart sink. She is gentle but ineffective in a chocolate fireguard kind of way, and takes ages to get anything done. Dorothy had finally fallen asleep so unfortunately the whole procedure of taking me off the drip at midnight woke her up as it went on forever. I felt really sorry for her. I could hear she was awake but she didn’t ask for any more pain relief. I managed to drift off to sleep but woke up around 4 in the morning feeling horribly sick. I could hear that Dorothy was asleep and knew that if I called for Unfavourite Nurse it would wake her up and I couldn’t do that. Several people have told me since that I should have done, but I disagree. How on earth can my feeling sick even begin to compare to the level of discomfort this lady was suffering? Did I have any control over my attitude and my body or not? This was the time to find out. I promised myself that if I was still feeling bad in an hour I would hit that buzzer, or at least collar someone when they came to disturb us for water, or blood pressure readings or whatever. I had a beautiful experience recently where I was awake for the dawn chorus, and heard the voice of one particularly beautiful bird singing its little heart out. I revelled in this lovely song and was pitched straight into an amazing and completely spontaneous meditation, wherein I was lying in a hammock in dappled shade next to a sun-kissed beach. The waves were gently lapping and they provided the backdrop to a truly healing experience. In the midst of my sickness I took myself off to this haven, and it served its purpose; next thing I knew I was being woken for the 6 o’clock blood pressure checks. Unfavourite Nurse was still on duty so I asked for some anti-nausea meds. Forty five minutes later she re-appeared with them. I rest my case.

Just to back track a tiny bit I should say that I had developed a bit of a temperature and a rash the night before. In the middle of all my other woes I wasn’t that bothered, but the doctors got over-excited and there were veiled threats of keeping me in for another day. As far as I was concerned, I was going home, rash or no rash. Every time I shivered with a bit of a temperature I threw the duvet off so the icy cold air conditioning could cool me down naturally – and it worked! I’m delighted to report that come the morning the temperature was gone and the rash had subsided quite a lot. The anti-nausea had helped and I instigated Operation Evacuate. It is amazing how having a higher goal in mind helps one focus on the job in hand. By the time Stephen arrived at 9.30 I was showered and ready to leave. Fenella was packed and all traces of pink had been consigned to my bags. One of my favourite doctors appeared to discharge me and commented that as the flamingo was packed there was obviously no way they were going to keep me there :-) Glad they are learning to read the signs!

It was brilliant to be home, but after a couple of days the rash really took hold. This is a known side-effect of the Cytarabine but by the time I went for my appointment with the consultant the following Monday it was driving me mad. Burning ants scurrying around under my skin is about the closest description I can think of. I tried all kinds of visualisation but was incredibly grateful to come away from my appointment having had an IV injection and clutching a prescription for a course of anti-histamine tablets. I see this as yet another indication of my body rejecting the toxins. I had another one of those ‘AHA’ moments on Monday, thanks to the insight of one of the nurses. I have been taking Olive Leaf Extract again to try and bring my heart under control. I had stopped with the advent of chemo at the stern admonition of one of the nurses, but decided to start again after the last, extremely bad interlude when it went out of rhythm. The results so far shall remain unspoken but let’s just say I am pleased. So it was with some surprise that I woke on Monday feeling all weak and useless again, only without the palpitations. Not quite as bad as before, but as I was due in for another 1 day chemo treatment (more of that in a mo) I figured we were going to the right place to ask questions. My blood test showed I was neutropenic, and when I mentioned my weakness to the nurse she said it was my body telling me to rest. Haha! That word again! How funny that it keeps cropping up.

With the best will in the world, it is very hard to be positive about the chemo when my body is continually screaming ‘Noooooooo! Don’t do this to me!’ and throwing up all kinds of evidence that it is unhappy. But at least the end is in sight. There are a few high fences between me and the finishing line though. The reason I had the additional 1 day chemo (hope you are keeping up with all this) is that on Monday and Tuesday I go in for the stem cell harvest in which my blood is drained out through one arm, filtered through a machine to remove the stem cells for future use, then put back into my body through the other arm with hardly any stem cells and in a potassium, magnesium and calcium depleted form. Lots to look forward to there, then. The 1 day special earlier this week was a ‘purging’ (?) just in case there are any cancer cells left. This is where I start to get confused. If all the cancer cells are supposed to be gone, why do I have to have Cycles 5 and 6? This in itself is called into doubt by a slip of the tongue from my lovely consultant. He was curious as to why I got the rash this time but didn’t with the first treatment of Cytarabine, and then he said ’Well you won’t be having any more of those so it isn’t a problem’. There was all of a two second pause in which I thought ‘there’s something you’re not telling me here’, then like a terrier down a rabbit-hole I was on the case with lots of questions like ‘That was only Cycle 4, do you mean I don’t have to have Cycle 6? And if that is the case, do I actually have to have Cycle 5?’ You can imagine. In his endearing, chuckling, Buddha-type fashion he wouldn’t be drawn, but clues have been given and I am hopeful in a very cautious kind of way that the finale to this crazy interlude might be slightly differently choreographed to what I was expecting, nay dreading.

The stem cell harvesting experience is going to be interesting for lots of reasons. The stem cell nurse/co-ordinator is perfectly nice but she isn’t someone I would choose to spend 4 intensive hours with. Apparently she is with me for the whole procedure as I can’t be left once it has started. I will be unable to move anything except my mouth for four hours so I don’t fancy her chances as a willing target for my questions, and I have a few. She was present during our appointment with the consultant on Monday and there were a couple of things that piqued my interest. She mentioned that from my blood results it seemed that whatever I was doing on a dietary/alternative treatment level is working – which prompted both of them to ask exactly what it is I am doing, but of course it wasn’t the time or place to go into details. There will be lots of time on Monday should the topic arise, which of course I will ensure it will in the hope they will at least start mentioning it to other patients. And secondly she filled out the consent form by hand and has the most spectacularly beautiful handwriting. We published a book a couple of years ago with Darrelyn Gunzburg, AstroGraphology: The Hidden Link Between Your Horoscope and Your Handwriting (see Book Blog for more info). Whist I won’t get the chance to look at her chart while I’m in there, I want to find out what lies beneath such an apparently medical and left brained person. I am sure she has hidden talents and she won’t be able to leave my side until I have unearthed some of them. Haha!

This has been a monster blog as there was so much catching up to do. There is loads more too which I will try to include with the stem cell harvest experience. My mum used to delight in telling me how I was christened at the Harvest Festival service of our local church. Let’s hope this harvesting is equally calm and fruitful.

And finally, please, please, please go to this link. http://www.youtube.com/watch?v=BaQdwTsVtCY I have already posted it on FB so some of you may have seen it, but Megan Kowalewski is inspiration personified. Unfortunately her cancer has returned but she is staying strong. She has bravely posted lots of other videos about her stem cell experience which I will be watching before my own next week.

Wishing you a warm, sunny weekend

Margaret xxxx

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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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8 Responses to 22. Are We Nearly There Yet?

  1. Kris Brandt Riske says:

    Definitely nearly there! Hope the stem cell procedure went well and that the 4-hour ordeal and time with the nurse was better than expected. Beaming lots of uplifting energy your way! xoxo

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  2. Sue J says:

    Hello again,Margaret.
    This box is now reacting differently so there is a good chance that this response will get through.
    The literary sociopath in me so enjoys your writing. I loved the ‘chocolate fireguard sort of way’ and the activist in me, hopes that the medics also read your blog. The IDontKnowWhat in me loves the roads you create into insight country; re the latter, the NiceNurseWho’Wanders’ reminds me of a certain recent situation which led me to declare ‘It’s not enough to be good, one also has to be strong. Goodness, without strength is close to neutral’. According to one of the Sunday voices ( ‘Your truth!’) it’s not that simple, so I didn’t get that right then. But reading about your unfavourite nurse it looks to be indisputable(?) that niceness without effectiveness is close to negative. It would be ultimately very ‘helpful’ for your Nurse to know that – don’t you think?
    I know, I know; there’s a righteous battle to be fought somewhere with someone – or something – every day, but now at such a time, where is your energy for it? And later when you just want to.. enjoy..where is the inclination?
    That’s why your written-in-the-now blog, is so valuable. One day, hopefully, it will be scheduled reading for Medics.
    Love Sue xxx

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    • Sue, you are a treasure and thank you so much for your insightful comments. It is one thing to write all this but quite another to get the comments back, and I always look forward to yours. Glad you were able to make the technology behave. M xx

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  3. Ronnie Smith says:

    I had my first chemo last Thursday followed by chemo tablets which are vile – was very poorly on Sunday night and again tonight but am feeling better now – might have overdone it today as I had to go out and buy new clothes (any excuse) as mine are falling off me as I am now down to 7st 13 lb from 9st 7lb since Xmas but am trying to keep my strength up. I now realise you are not the Margaret I know from dancing – sorry for the confusion.

    Both Bill and I were looking forward to going to Portugal with Suzanne and Julie next week but we had to cancel on advise from my Oncologist Dr Parkingson – she is lovely by the way. I am glad you are getting there and I wish you well and without saying, you are in my prayers. God bless – Ronnie xx

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    • Hi Ronnie,
      Yes the chemo is a horrible shock to the system. Make sure you drink loads, and I mean loads, of water so it flushes through your system. If you can also get hold of some vitamin A drops you could take one of those a day, which will help stop your mouth from getting sore. And organic turmeric capsules from amazon.co.uk are also good to support your system and help to stop the cancer growing any more. So sorry to hear you can’t make the holiday. Hopefully by next year you will be fit and well enough to go on the next one.
      Sending healing and prayers for you
      Mxxx

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  4. Rochelle says:

    Hi! Someone in my Myspace group shared this site with us so I came to take
    a look. I’m definitely loving the information. I’m bookmarking and will be tweeting this to my
    followers! Wonderful blog and wonderful design and style.

    Like

  5. Caron Rogers says:

    Looking forward to Monday’s blog & reading about your discussions with the stem cell nurse/co-ordinator Cx

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