28….And on the seventh day…..

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

 This blog seems to have a life of its own – I really do just feel like the messenger sometimes. I had some ideas on Sunday which were forming into something interesting, then finally started to write this last night, but didn’t finish. As I come to it today (Wednesday) there is yet more that wants to come out, mostly media related.

Did any of you catch the Radio 4 programme about cancer and diet? It was interesting, but sadly just confirmed that there is actually no proper dietary advice for patients and it is all as bad as I thought it was. The consultant interviewed was really supportive of the concept but he admitted that he spends all his time keeping up to date with the latest developments in chemotherapy and with the best will in the world doesn’t have time to advise on diet, even if he knew anything useful. Which of course he doesn’t because nobody in the NHS is willing to step outside the ‘science is God’ framework and consider for a moment that diet can at the very least help recovery from the ravages of treatment. So, as we all suspected, it really officially is left to the patients and their loved ones to do the research. Obviously a gap in the market here. Which brings me to the next sound bite.

Maurice Saatchi was on the Radio 2 Jeremy Vine show yesterday talking about his wife’s death. She suffered from ovarian cancer but died through illness related to the toxicity of the chemo she was given and the resulting debilitation to her system. Something which you know is very close to my heart as I approach with some trepidation my own stem cell transplant (more of that below). It is good to have such a high profile and articulate person involved in fighting the battle against cancer. Why? Because the battle isn’t really against the cancer, which at the moment, with an estimated 1 in 2 people being diagnosed with it, is winning hands down; it is a battle against a system which provides protection for those brave souls who are trying to cure it. For anyone confused and surprised by that statement, I will explain. My frustration expressed in the paragraph above comes from the unwillingness (understandably) of the medical profession to step outside what is scientifically proven. This unwillingness comes from the knowledge that, in law, if they suggest something to a patient which deviates from accepted protocol and that patient consequently dies, then they can be sued for negligence. If, however, the patient follows an accepted course of chemotherapy and dies from the toxic side effects or infections, it is recorded as death from the cancer. Which is of course untrue. Maurice Saatchi has requested a Medical Innovation Bill to be passed in the House of Lords which in effect protects the medical profession from such action. As he so rightly points out, innovation is deviation from the norm, and if deviation is discouraged due to the law, there will be no progress in the search for a cure for cancer. Nobody will try anything radically different. A massive step in the right direction and one I support wholeheartedly. You can read more about it in the Huffington Post article here http://www.huffingtonpost.com/2013/03/13/maurice-saatchi-wife-ovarian-cancer-bill-experimental-therapies_n_2867353.html. Hopefully Lord Saatchi’s endeavours will also lead him towards questioning the stranglehold and bully-boy tactics of Big Pharma which currently subdue any opposition to them from alternative therapies.

I was doing a bit of research of my own at the weekend. I have found that about 12 days after treatment I get a really sick and sore tummy plus a feeling of weakness. The cells in the stomach, gut and mouth replicate fastest, so this is where you first notice problems – there is nothing to replace them once they die off as the baby cells that were growing in my bone marrow were killed off in the last bout of chemo and the new ones are only just being created. Vitamin A does a huge amount to alleviate mouth problems, hence so far, no ulcers or thrush, but my stomach starts to feel really raw. I discovered that L-Glutamine is an amino acid, effectively one of the building blocks of the body, and you can take it as a powder, dissolved in water. It is especially useful for stomach problems. Sounds like a chemo patient’s best kept secret!  Forgive my rather basic scientific approach – you can go look up all the long names if you really want to. We wandered rather slowly (I wasn’t having a good day) to our favourite health food shop where the lovely assistant explained a lot more and confirmed that lots of chemo patients use it. I couldn’t help thinking, ‘Well, Duh! It would have been nice if someone could have told me about this several cycles ago!’ You know sometimes it is the most incredible hard work being ill and I do get irritated that these products are available out there but the short sightedness of the healthcare system precludes any truly useful information being given out. So instead they just throw you some more pills. Anyhow, got the powder, miraculous recovery in, oh, about 2 hours I’d say. So anybody out there who is suffering, go and get some nice white L-Glutamine powder to put in your water.

Monday came and with it our appointment with my (wonderful) consultant to discuss the Big Plan. Yes, there is no cycle 6, yay, but he painted a pretty bleak picture of the stem cell transplant. We did have a good laugh though and there was a moment when he looked a teeny bit scared of us and slightly bewildered. He said that there are in fact 6 days of very harsh chemo (not 5 as I previously thought), so, wait for it, on the 7th day…..I get the stem cells. The symbolism (and possibly strain) was all a bit much so Stephen and I just looked at each other and burst out laughing. We were cracking all kinds of bad jokes about me being recreated on the 7th day and on the 7th day I will rise again, as you can imagine. Or maybe you just had to be there. Order was restored after a few minutes and we concentrated on the fact that the chemo will definitely kill all the cancer cells that week because it will more or less kill me in the process. There won’t be a single bone marrow cell left standing amidst the rubble of my body after all the drugs have done their work and that is a really scary thought. It is incredible what they can do these days. But it is also a sobering thought in that they will be rebuilding me from scratch by putting back about three quarters of the eleven and a half million cells they harvested a month ago. As you can imagine, this is going to be very hard work for my poor body so he said I should expect to feel pretty bad in the week following chemo. Cue L-Glutamine, Vit A, Vit D, wheatgrass protein, turmeric, Aloe Vera and anything else I can muster. I told him about all of these and he is more than happy for me to take anything that might help. Just as well as I was going to take it anyway. Although I quite possibly have the most amazing consultant in the world I do get tetchy when other methods of support are ever so slightly disparaged. Bear in mind that I was still in shock from finding out I would be taken to the point of death and then rebuilt on the 7th day – so I did say that it wasn’t just luck that I hadn’t had the mouth ulcers, thrush, diarrhoea, constipation, etc. that he always asks me about. It is because I have put a lot of effort into staying as well as I possibly can; thus I am hoping to cope a lot better than expected after the ravages of the transplant.

The issue of rebirth is interesting and we spent a while talking about that – obviously only in the scientific, physical sense as we were after all in the hospital with an NHS consultant. What he said is that they don’t know what caused the original cell to mutate. Science has made wonderful strides and in cracking the DNA code has produced a huge wealth of information, but in a sense it is all too much – they don’t know how to find specific details within all this so it will take a lot of time to unravel; he is very hopeful that in the not-too-far-distant future chemo will be very old hat and that there will be entirely new ways of dealing with and targeting specific cells. But that isn’t possible just now. So we talked about the possibility of the cancer returning, which takes us into the whole deliberately confusing world of statistics. There is a 70% chance of me still being in remission in five years’ time. Which of course means there is a 30% chance of it coming back. It also means that the data is quite new and the odds might be better when reviewed in ten years. What do we do when we are faced with such information, which is, on a personal level absolutely meaningless? I have no idea which group I am likely to fall into, and all I can do is load the odds in my favour of it being the bigger one by taking advantage of everything that comes my way. Stephen and I are coping with all this whole experience by dealing with each day as it arises, and after a few moments of sombre contemplation we decided that the statistics do not form part of this mindful practice.

The conversation between the three of us moved to allogeneic transplant, which is a stem cell transplant coming from a tissue matched donor. The thinking behind this is that my own stem cells, new and pretty as they may be, also carry within them the programming for mutation, so in one sense all we are doing next month is putting back several million cells which I originally made – just one of which could contain within it the potential to mutate. You could go crazy with all this. Someone who is cancer free (currently!) won’t carry that potential. However, the risks involved in allogeneic transplant are massive and I don’t even want to think about it. What cost regrowth and rebirth? I have no idea but it opens all kinds of cans of worms and my can opener is somewhat over-subscribed at present. That one can just sit there for a bit.

My feeling from the last few days is that I have been through the mill on all levels: philosophical, physical and metaphysical. I was in hospital yesterday for an unscheduled stopover as I banged my head badly on Monday night. We had gone out for the first time in months to celebrate a forthcoming treatment-free period (how the gods love to laugh) and as I had miscalculated my ability to walk to and from the restaurant we got a taxi home. Although I’m not neutropenic or anaemic (hurrah!) my platelets are very low which means there is a risk of bleeding internally from bruising. Whacking your head on the taxi door after a night out at the local curry house more than amply qualifies for concern so yesterday I spent four hours in Ward 10 having more blood tests and a CT scan. Which came back fine BTW. I was on my own in there as Stephen finally escaped to London on a long-overdue visit – at my insistence, poor guy – and he hadn’t even got off the train before I was back in hospital. I didn’t feel like reading as my head was hurting, so I spent all that time people-watching. And sadly, amongst the people I watched, was my lovely friend Jean, who was brought in by ambulance. She cannot be much longer for this world and it grieves me deeply. It grieves me that there are extremely unconventional treatments out there, like cannabis oil, which are very controversial and illegal, but by which she could still be saved. But she won’t be because it isn’t being offered.

Do there have to be two worlds? Are they getting closer together? Why does it have to be a showdown between conventional and ‘alternative’ treatments? How can we embrace the best of both so that more people survive? Surely rescuing more people from the clutches of cancer is way above money and politics. Hence my offering of the Serenity Prayer – if there is any way I can make a difference in all this, I will.

With love

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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4 Responses to 28….And on the seventh day…..

  1. matrixdavis says:

    Hi Margaret,

    What I see here is that you are finding your voice [or one of your voices] in the midst of this hellish situation. Keep in mind that your prog Moon is now conjuncting your Prog. Pluto. In about a month it will be on your Prog Venus – so hopefully the worst will be past.. Amen

    Love,

    Mxx

    Like

  2. Stephanie says:

    Keep up the good fight, Margaret! Think of it as going through what you are in order to write a book that will blow the whistle on diet, conventional v complementary medicine, Big Pharma and all the rest. You WILL come through this. Not long to go now:)

    Love, light and healing as always

    Stephanie
    xx

    Like

  3. Sue J says:

    Hello dear Margaret,
    Is all this the active lead-in time to your new ‘job’, your new life, your new purpose?.
    We have been waiting for (a) person(s) with these qualifications to serve as catalyst(s) for an open policy change not just (just?) for the treatment of cancer but also for other health ‘conditions’.
    What qualifications?
    You are in there now at the core of the cancer experience, and despite recurring debility, documenting all of it in real (and real feel) time.
    You can write vividly with accuracy, instinctively providing detailed answers to questions that some of us haven’t yet thought to ask.
    You are sifting, experimenting, reviewing ‘alternative’ options/solutions for us
    You have the intellectual intelligence to cross think and cross link..
    And the emotional intelligence to have attracted, not ripe network plums. friends…. inadvertently and sincerely collected and all the more significant for that.
    No intentional publicist/marketing strategist could have hoped to create so valuable a collection for such a purpose as this.
    I’ll be the first paying member for your campaign
    Love SJxxx
    Just one tiny ommission(?)re the sentence (with which I agree!)’it is a battle against a system which provides protection for those brave souls who are trying to cure it.’ Did you actually intend to write …’which provides no protection…’.?
    I might just be having a small hours moment, but either way, once you’ve seen this note please delete as appropriate? I would have emailed you, but my AOL Email address system no longer operates properly (Judy will tell you what a pain it is), I can’t face searching manually and Stephen, with so many urgent emails to attend to, might not pick up an email from me for a while .

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    • Hiya,
      Many thanks for your comments, which are always insightful and helpful. I can well imagine this all turning into at least a part time job as the more you find out the wider the remit becomes – it really is endless. Regarding that sentence, maybe I need to change it. I did mean what I wrote – that the system doesn’t protect doctors – if they step outside of the official treatment protocol they are wide open to a charge of negligence if the patient dies. What Saatchi is proposing is that they are protected from that liability, which in turn will allow them to suggest a wider choice of treatment. I’ll think about that one though and maybe rewrite it!
      Mxx

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