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Journey and Survival through Mantle Cell Lymphoma

by Margaret Cahill(more info)

listed in cancer, originally published in issue 224 - August 2015

Receiving a cancer diagnosis is indescribably horrible and a massive shock. Nothing in the world can prepare you for the sudden feeling of powerlessness and hopelessness that is the immediate gut reaction to such news; we all deal with it in different ways. My own immediate reaction was intense grief; having only met my partner comparatively recently there was no way I was ready to accept what I perceived to be a death sentence and make a premature departure from our life together. And to me it was initially a death sentence; nearly everyone I had ever known who had been diagnosed with cancer - and that includes my cousin and both my parents - had died of it, so my personal experience contributed to my feeling of absolute terror and helplessness. In the early days and nights after diagnosis I would suddenly burst into tears, and whichever member of my family was nearest would just hold me and let the tears flow. It was horrible.

Journey and Survival through Mantle Cell Lymphoma

This probably seems a very strange sentiment to express right here, but my heart goes out to the doctors who have to deliver such news and I would imagine that the experience doesn't get any easier with time. My appointment with our ENT consultant was finally booked after six long months of increasing illness and debilitation; in a sense I was looking forward to seeing her as I was fed up with feeling so awful. I returned from a business trip to New Orleans in May 2012 with raging tonsillitis and bronchitis, and although the latter went in time, my tonsils started a whole new life of their own. By the time we got to see the consultant in December, one of them had taken on a particularly alien appearance and I was finding it hard to swallow. One of the questions I am most frequently asked is whether I suspected something was wrong, and I have to say that I did. I had looked up tonsillar cancer and throat cancer as I knew something was very wrong with my throat, so in a way I was prepared for, but hoping not to receive, bad news, and certainly not as bad as what actually happened. The consultant was ruthlessly quick and efficient. After feeling my neck and putting a probe up my nose and down my throat to illuminate the area, she pronounced that she was 90% sure that we were dealing with lymphoma. I knew perfectly well what lymphoma was, but being in complete shock, I remember asking, very quietly, "Isn't lymphoma cancer?" She replied, very gently, that it was. As I started to sob quietly, she made call after call to get me an MRI scan the following day and onto the surgeon's list for a biopsy the following Monday, dialling new numbers where she got voice mail. She was amazing and I am indebted to her for her empathy and speed in getting me to the top of the list. Then I was whisked to pre-admission to do all the paperwork. I remember emerging from the hospital into the wet, dark, winter evening like a rabbit trapped in the headlights. My whole life had changed in just a few minutes. And this was all just before Christmas.

During the planning of this piece I happened to hear a well-known personality talk about his own experience of the early days of diagnosis, and I was heartened to hear (in a strange way) that he felt exactly the same way. There is no manual for dealing with this; no "follow A, B and C and it will all be fine" set of instructions with a guaranteed outcome, and it is an incredibly isolating and frightening experience. I started to write a blog fairly soon afterwards as an easy way of keeping everyone up to date, and I remember, at a particularly low moment, referring to the oft-used New Age mantra that we are 'all one together and part of the same cosmic consciousness' and railing that actually, no, we aren't all one at all, because everyone else was fine and it was me facing this lonely path of illness and horrible and very toxic treatment.

I had the biopsy the following Monday and was left in relative peace until after Christmas and New Year, but only just. It was 2nd January 2013, a couple of days before my follow-up appointment with the ENT department. The phone rang quite late in the evening and I picked it up expecting it to be a friend - I was assuming that on the health front all would become clear at the scheduled appointment - so I was surprised to hear it was a consultant from the haematology department at Bournemouth Hospital. He was incredibly gentle and told me I needed to have some more tests done and that I would be expected in the cancer ward of Bournemouth Hospital the next morning at 8.00 AM - I would be in for two days. After arranging the details I hung up and the tears flowed again. It was starting to get very real, and as I later said on the blog, the only way round it was through it.

Once we got into hospital we were given the results of the biopsy; I had Mantle Cell Lymphoma, an incredibly rare and aggressive cancer with a proliferation rate of 90%, which would need equally aggressive chemotherapy and a stem cell transplant to stand any chance of survival. It occurs to me now that I never got 90% for anything at school - why did my highest mark ever have to be with cancer?! I spent a cold and wakeful night alone in the isolation suite and in the very early hours of the following morning discovered that the screen by the bedside had internet access. I obviously did the worst possible thing (who wouldn't?), and checked Wikipedia for more details on my diagnosis. Massive mistake. I read that the prognosis for MCL was extremely poor, survival times were short, the treatment was usually unsuccessful and by the time the nurse came in to ask whether I wanted breakfast I was sobbing helplessly. She sat with me a while and gradually got me back to some level of calmness. She told me there are no medals for bravery in the cancer ward and it was always alright to be just how I felt at that time. That was an amazing feeling, especially as by the time the consultant and his entourage came in I was back to sobbing helplessly at the enormity of it all, and wondering how on earth I would find the strength to deal with it.

Did this pattern of helplessness and grief continue? Thankfully no, it didn't, and for several reasons. I believe that a huge part of coping with cancer is dealing with the fear - fear of treatment, fear of side-effects and fear of not knowing what is happening to your body - and once I got into treatment I started to become involved on a cerebral rather than an emotional basis. Yes, the fear was still very much there, but it no longer coloured my every waking thought. It had become clear that we knew far too many people to keep updated on an individual basis so I started the aforementioned blog at http://margaretcahill.wordpress.com . The first couple of entries were purely updates on the latest events in the saga, but as I became more involved in the hospital and the treatment regime, something else took over. I had some lovely and very positive responses to the early blogs and that encouraged me to open up some more and let people into my world. I was discovering that life on the ward was anything but heavy and serious - in fact it was often truly inspirational - and I was anxious to relay it to my fledgling readership. I found that I was distancing myself from whatever was going on because I was capturing it in my mind for a blog, recalling the characters and events as they happened. I likened it in a way to social observation; it was just that I happened to be centre stage, and it was incredibly liberating. All this desire to 'share the misery around', as I laughingly called it, came as quite a shock as I am usually a really private person. I had initially started a spiritual journal in an attempt to release the powerful emotions that were rising up within me, but after a couple of attempts I realized that - for me at least - it wasn't working. Pouring out my vitriol then closing the book until the next time wasn't achieving anything as far as I was concerned; the emotions were just festering there ready to be read the next time I opened the book (and let's face it, who doesn't read what they have written?), which seemed a pretty unhealthy state of affairs to me. Through the blog, I realized that I had access to an almost infinite well of understanding and support that was living and breathing and constantly changing. It nourished me, and I loved it.

Cover Under Cover of Darkness

I also managed to move away from my initial sense of helplessness by researching ways to try and stay healthy through the chemotherapy. Unfortunately, there is no suitable nutritional advice available through the NHS (beyond having a balanced diet and eating your 5-a-day), so I am incredibly lucky to have a friend who is a nutritionist and has had cancer herself. She knew exactly what I would need as the treatment started to affect my system, so I was able to share on the blog that one Vitamin A drop a day was keeping any ulcers at bay; that wheatgrass protein was supporting my immune system; that Aloe Vera juice was calming my stomach, and so it went on. I knew that the toxicity of the chemotherapy was a serious concern and as I didn't appear to have any other option than the drugs, I was determined to come through it in the best shape I could. As I headed towards the stem cell transplant that became even more important. Once in the isolation suite, I was delighted to find I had my own fridge and we also smuggled in a kettle and cafetière so I could have my morning mug of coffee. Possibly not the best thing for my body at that time, but incredibly good for my spirits as, thankfully, throughout all the sickness and vomiting and loss of taste, I never went off coffee. And it was only once I was ensconced in isolation that another factor in my survival came into play.

I had always liked the staff on the wards, from my lovely consultant downwards, but when I went into the isolation suite ready for the transplant, they really came into their own. I was intensively nursed like never before, and the staff became an amazing source of support for me. I had kind of assumed that a cancer ward would be a really dreary, tragic place to be, but nothing could have been further from the reality. My incarceration for the transplant lasted for 23 days, during which time I really hit rock bottom. I had six days of intensive chemo leading up to transplant day, the last day being by far the worst. The final dose of chemo, Mephalin, is called 'the bomb' by the staff as it literally destroys every scrap of bone marrow - and everything in the GI tract as a charming side effect. The only way to try and prevent massive damage to the cells in the mouth is to suck ice lollies before, during and after the treatment, which for me was at 10 AM. I hate ice lollies at the best of times, so you can imagine that sucking brightly coloured children's lollies as quickly as possible, one after the other, was just horrible, and I felt really sick for the rest of the day. But the nurses even made that fun as they raced in and out of my room with different combinations of lollies, making sure I never ran out.

On one particularly busy day for the staff, one of the nurses was saying that she wished she had more time to spend with patients and talk, rather than having to rush away as soon as the task in hand was completed. I thought for a moment, then said that it is in the little things, the injections, the changing of drips, collection of wee samples,  and all the mundane routines like handing out of drugs that their true compassion shows, and those momentary encounters are so important in the microcosm that exists for a patient, particularly in isolation. I think she was pleased and surprised to hear that, and in turn, I was amazed to hear that most of the staff actually apply to be on the cancer ward as they consider it to be the best place to do some real nursing. One of the senior staff nurses was a really feisty and gorgeous looking young woman, and she asked to be transferred from orthopaedics as she couldn't stand the whingeing footballers with their broken limbs. She wanted to be working with the really sick people, and certainly as a patient it was nice to be on the receiving end of someone who was really living out their true vocation. It was also a really humbling experience and I am in awe of their skill and their compassion.

Being in hospital is a de-humanizing and disempowering experience despite the kindness of the staff, and at some deep level I realized that I had to empower myself in some way in order to survive intact. I had unwittingly accumulated a whole array of pink accessories during the previous few months, so it became a ward joke that a Sherpa train of black bags would follow me into the ward for every cycle of chemo - and of course even more for the impending isolation and transplant. The wards are usually really cold as the air is double filtered, so I would take in a duvet with a choice of two pink covers, my pink and black cat slippers, pink and black wash bag, pink toothbrush, pink towel and flannel, purple laptop, pink hats (my hair was long gone by that stage) and a totally crazy pink flamingo (who appears on the cover of my book), called Fenella. We had found each other in a luxury garden centre a couple of years previously and up until my illness she had reclined on one of the filing cabinets at the office. She became a powerful symbol for me and I always made sure she was in pride of place when ward rounds were in progress. Ward rounds can be intimidating experiences; they consisted of the duty consultant and several of his/her registrars plus the senior nurse on the ward gathering around my bed to discuss progress so far and forthcoming treatment plans. My intention in every cycle of chemo was to get out and home as quickly as possible after the drugs had been administered so I could eat decent food and get some rest, and the medics came to realize that if Fenella was packed away there was no way I was staying another night. I also made sure that, with the exception of three very bad days after the transplant, I was up and dressed and sitting cross-legged on my bed ready for them to assume their positions around me. I tried to think of it in terms of a business meeting, so it was really important to be on as equal terms as possible - after all it was my health that was being discussed - and being properly dressed went some way to giving me confidence. I frequently disagreed with them (why do I have to have that drug?), and always insisted on keeping up with my own regime of complementary therapies, so I needed all the confidence I could muster. I was absolutely blessed to have an incredibly understanding and supportive consultant who was happy for me to use all and any means at my disposal to stay healthy during the treatment. In fact (when I wasn't being pushy or resisting their drugs) I got on with the other doctors really well, and I knew that the staff wanted me to get well just as much as I did. They probably secretly wanted me out of the ward too!

Journey and Survival through Mantle Cell Lymphoma

It is now two years since the stem cell transplant and the birth of my new 'body' and I am in remission. This is my second chance at this crazy thing we call life, and I am truly grateful. My heart goes out to all newly-diagnosed patients entering treatment, and if there is one thing I would like to pass on out of all this, it is that there are many resources at your disposal and a whole host of people who will support you during the process. Open up, let them in and allow them to be there for you. It will make all the difference.

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About Margaret Cahill

Margaret Cahill publishes books through her company The Wessex Astrologer, which is based on the south coast of England. In 2013 she was diagnosed with Mantle Cell Lymphoma and started a blog to record her experiences as she underwent five cycles of aggressive chemotherapy and a stem cell transplant. As well as updating the blog on a regular basis she writes articles and is regularly interviewed on the ways that complementary therapies and nutrition can help patients to survive the toxicity of chemotherapy in better shape. Her book Under Cover of Darkness - How I Blogged My Way Through Mantle Cell Lymphoma is reviewed in PH Online. She can be reached through her blog http://margaretcahill.wordpress.com

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