41. Remission

It’s a strange feeling, being on the other side of treatment. Looking back on it, the whole period since December last year seems like a distant dream, whereas when we were going through it, it felt like we had stumbled into someone else’s nightmare. The funny thing is that I wasn’t even expecting my consultant to have the results of the PET scan when we turned up for our scheduled appointment. I had the scan on the Wednesday and was told it would take a week for the results to come through, so my sights were set pretty low, this being the NHS and everything. I was completely unprepared for the excited party atmosphere that prevailed in the office when I asked, very tentatively, if they were back yet. Funnily enough, neither Stephen or I mentioned them on the way to the hospital – he didn’t want to bring it to my attention, and I had almost discounted them; as you will know from previous blogs I am very ambivalent about these things. The scan is only as good as the day it is taken, and things can change very rapidly. So, we had lots of hugs with both my lovely consultant and the stem cell co-ordinator, and it wasn’t until we got to the car that it hit me. As did the tears of course. Somehow it suddenly did matter very much that the computer said ‘yes’. I didn’t expect to feel such relief and happiness and I didn’t quite know what to do with myself. There are still a lot of things to take into account though – I’m not off the hook yet. Despite arguing my case I think I will have to have the flu jab, as will Stephen and Matthew (my youngest son); they may well avoid having the flu themselves but they could be carriers and I could catch it that way. I know there are side effects and I also know that the vaccine is only effective for a particular strain each year, but the reality is that if I catch any kind of flu I could be very ill indeed – so I might have to give in.

My blood results were splendid, but I still can’t go on a plane or mix with people en masse for many months to come as my immune system is very immature. To be honest, the amount of sneezes and coughs I’ve been hearing just in Sainsburys is enough to put me off. I usually wear a scarf as an accessory, and it comes in really useful when somebody is busy spreading their germs around; without wishing to put you off your food, every time somebody coughs or sneezes a great spray of bugs gets released which, if it happens to be close by, you are quite likely to walk through and inhale. Enter the scarf. I am able to hold it across my face and skulk through the potentially toxic cloud and hopefully exit the other side without having breathed anything in. Virgo moon people can be pretty fussy without any help like this. You can imagine mine is having a field day. The other obvious things are supermarket trolley handles and escalator rails. Isn’t this jolly? I bet you won’t want to leave the house until the flu season is over :-)

This also means we have had to cancel our Christmas party, which grieves me greatly. We have made the odd sortie to restaurants but I haven’t managed to get together with a bunch of people for ages. Clearly it isn’t going to happen for some while yet, either; we usually have about 40 to 50 people at our party, and the chance of someone bringing more than a bottle is extremely high at this time of the year. Oh well. Ho hum, as opposed to Ho!Ho!Ho! There will be other opportunities. To be honest, I am quite used to being a recluse now, although I am sure Stephen is champing at the bit. Now that my appetite is back with a vengeance we will be able to have people over in small disease-free groups and resuscitate our social skills that way. Sounds so inviting, doesn’t it?

My appetite really is back, and I am so pleased and relieved. I am definitely not a ‘foodie’ but it is nice to enjoy my meals and there was a period when everything smelt and tasted horrible. Well, most of this year, to be truthful. After many months of pushing teeny portions around my plate I am delighted to report that my taste buds are fully active and are capable even of appreciating Chardonnay again. That is a massive relief as the beautiful pink wineglass given to me by Cathy really does have to be filled with wine to get the full effect. I do still have reminders of those dark days though. About once a week I suddenly become – as in feel and smell – really toxic and full of chemo. It seems to happen around the weekend, and I am trying to understand the pattern. I feel as though my pores are exuding chemo and I know it smells on my breath, which also affects my taste, although not as badly as when I was actually going through it. I have Liquid Zeolite drops, which are good for releasing toxins, and I take an Epsom salts bath (along with a few drops of essential oil) and that seems to help. I am curious to know what this is though and why it happens. I questioned my consultant about it and he said it isn’t toxicity. He said that all the toxins were out of my system 24 hours after the last chemo dose – they wouldn’t be putting brand new stem cells into a toxic environment as that would be plain silly and very counter-productive. And clearly, according to the scan, the transplant has done its job. What he said is that as the organs replace themselves they are in effect casting off old cells, which I guess happens all the time with everybody, but in my case those cells have the remains of the chemicals in them. I don’t know. The rest of the time I don’t feel toxic, and my strength is coming back in leaps and bounds. Any enlightened souls out there, please – enlighten me.

I am really looking forward to getting properly fit again. I can’t go to steam rooms or swimming pools until after the flu season, which is something else I hadn’t thought about, so I need to just appreciate the things I can do. One of which is running, although I would hardly class myself as a proper runner, my get-out being that I am built for speed rather than distance. The furthest I ever managed was 5 miles (after a lot of practice) and I really thought I was going to die. Which is actually brilliant, because, in line with my cardinal personality, it means I don’t have to spend a long time doing it to feel the benefit. I know people who don’t even warm up until after 5k, so they then have to run an awful lot further than that to get any benefit. So I’m quite pleased actually. I can get out in the fresh air, have a nice little run of, say half an hour absolute max, preferably less, do a bit of stretching, then I’m ready to move on to something else, job done.

And that something else, if I’m not working, is enjoying writing. I am now starting to pull the blogs together to form the basis of a book, as suggested by several readers, and I am stunned by the sheer amount of words I have already written. The blog has been an absolute life saver, make no mistake, as have been your comments. It has enabled me to vent and pour forth the multitude of conflicting emotions I have been feeling. And still do feel. Maybe blogging should be listed as a therapy :-) The problem is that I want to include all the blogs as they are complete in themselves and tell the story quite well when read in order. But just the blogs alone amount to the size of a doorstop when converted to book size, so I have a bit of a job ahead of me as I also want to include a lot of other bits that didn’t get a mention. As I read through them again I am astounded by the whole experience; just like a journal they recount exactly what I was going through, and it seems I have blanked a lot of it out – it makes surprising reading for me as I revisit my journey. As an end note to the whole process I find that I did have some conflicting feelings after the meeting with my consultant last week. We were all happily hugging and cheerfully bouncing round the room, but I had such a conflict in my heart. I remember vividly the period when I was considering chucking in the chemo to go to India for an Ayurvedic detox. My consultant (and other people) talked me out of it, saying that the cancer was so aggressive that I could not risk a single cell being left behind – which Ayurveda couldn’t guarantee, but which modern medicine could – although the trade-off could be huge in terms of damaged organs and a possible relapse. Now, as I am through the other side of it, I am obviously delighted that we got the best possible result, but I feel strange having been helped, nay, saved, by something I hated so much, and against which I spoke so vociferously. I don’t have an answer to this – it is another wonderful occasion where because this is a blog I can just say what I am thinking and be confused about my feelings and it is all perfectly acceptable. I am not deluded enough to think this is necessarily it – all over bar the shouting. I have read a lot of stuff which suggests that the very act of having chemo locks you into the Big Pharma system; once you have had chemo the likelihood that you will need it again is very high, so they have a guaranteed customer base to milk. That makes me very cross, but at this point I am also strangely grateful because at least for this moment I am free of cancer. I suppose what it takes me back to is that we can’t know the future. Could we possibly be back at mindfulness? I suspect as much :-)

Thank you so much for sharing my latest musings

Wishing you all good health

Mxx

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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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14 Responses to 41. Remission

  1. Caron Rogers says:

    The running group you inspired me to set up some ten years ago still meet at the deckchair 18:30 every Thursday whatever the weather. If you decide to join us for a social jog, we promise not to breathe on you. Cx

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  2. maria barry says:

    I imagine I would feel the same as you with a conflict over alternative versus big pharma. I lost myself for a long while after losing my first husband to diabetes related complications, most probably associated with two factors, he had no ‘fight’ and his complete reliance on big pharma.

    Your book will contribute hugely, I followed it with a nodding head since I first discovered it. Many like-minded people, faced with a similar dilemma, will take great comfort from it, and a huge amount of tips and advise on surviving. Your blog is full of humanity, depth, and a sheer will to be where you are right now.

    Love and healing continues to be sent your way xxx

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    • Thank you so much Maria. It is hard work but strangely cathartic going through it all again – it is almost feeling as though I need to do this final step to be able to move on. It is turning into a very long task though and I have increasing sympathy for what my own authors go through!
      Warmest wishes
      Mxx

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  3. Dolores. says:

    Dear Margaret
    how wonderful you sound.. it is so good to know you are feeling so well and chirpy. You have been an inspiration to us all. I was looking back over your writings and thought what a great book it would make, something that would give hope and strength to others facing the same grueling fight back to health. Think about it dear.

    As for Christmas… well a quiet one with just the family will be just as nice and you know everyone will be with you on other levels. It will be a special Christmas because of what you have been thruogh… and come out the other side.

    love, health and strength to you dear
    Dolores

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  4. Terry says:

    Margaret,
    You give us all hope. I have been through my own, relatively inconsequential journey with chemical sensitivity. I applaud your way of honouring your need to protect your immune system. There are lots of us “crazies” out here who do the same, but for varied reasons. I have to be aware of the presence of mold, toxic metals, etc. as I go through a deep detox. I think your exudation of chemo is timed with the Moon in Cardinal signs, specifically over Pluto, Uranus, and Jupiter. Be well and live in joy!

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    • Hi Terry,
      Thank you so much much for your good wishes and thoughts-I will start paying more attention to the Moon. I have been so wrapped up in thoughts about the recent lunar eclipse falling exactly on my nodes, along with mars on my moon, that I have forgotten to check other things. That is the wonder of astrology isn’t it? There is always something else going on!
      Sending all good wishes for a successful detox
      Mxx

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  5. You might drink that jorobte tea I sent you as a prophylactic (see http://www.dearbrutus.com/jorobte_english.html for details). If you no longer have it, I can send you some more.

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  6. Jane Cahill says:

    Hi Margaret My you have done sooo well, you have been to hell and back! I wish you all the happiness and luck in the world for the future. Love Jane xxx

    Sent from my iPhone

    >

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  7. Cathy says:

    So glad the wine glass is now being used to full capacity ;)

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  8. smilesinwa says:

    Margaret,

    It has been a journey reading through your blog of the last several months. I only discovered in October that you and I share a path in life – mantle cell lymphoma. You’re about 6 months or so ahead of me, but our blogged journey has had so many of the same aspects, it’s nice to know my physical experience of this dreaded ‘C’ hasn’t been unique.

    I just finished Cycle 5 of my chemo treatments on October 29th and start my final in-patient Cycle 6 on November 18th. My oncologist is using the France protocol of alternating therapies of R-CHOP/R-DHAP followed by the autologous stem cell transplant (probably January). I’ve also been using alternative care from the very beginning (naturopath, chiropractor, acupuncture, massage, herbalist). I credit my naturopath for all she has done to minimize my chemo side effects. I smiled broadly when you said you started taking Vitamin A drops, Vitamin D drops and L-Glutamine…those are 3 of the many things I’m taking. My oncologist is astounded by the results he is seeing – I was stage 4 when diagnosed and had 40% bone marrow involvement on top of a massively enlarged spleen and full lymph system involvement. Thankfully my last PET scan (a couple weeks ago) showed the cancer is gone except from my spleen. We won’t know about the marrow until my next biopsy in a few weeks, but we remain hopeful.

    My journey has been captured in an online diary through a non-profit organization called CaringBridge.org. I’ve been entering journal notes/sagas/stories since the middle of July when I was diagnosed; almost 60 entries. I’ve been a part of WordPress for quite a while, but hadn’t even considered using this format until I read your entries.

    It has taken me about a month to digest all that you have written. At times it was difficult to read and follow along because I was physically and emotionally drained from my cancer treatments, and reading your experience was like reliving mine. It was truly a colliding of Universal energy that brought us together. I found myself doing research on the link between MCL and pesticides and for some reason, Google gave me your blog as one of my options. I am grateful to have shared your experience with you, and am quite happy that you have arrived on the other side of your stem cell transplant healthier and healing.

    I see that it has been a couple of weeks since you last posted, but I’m confident you’ll see my post soon enough. I’d be honored to correspond with you, and if you’re interested in reading my own experience, I’d be happy to share my CaringBridge diary with you…I’ve even mentioned you in it. You can also find me on FB. I tried finding you there, but your name wasn’t unique enough for me to single out which profile was yours.

    Again – thank you for taking the time to chronicle your journey. I have been waiting patiently to finish reading all of your entries before reaching out, and patience is in my Top 5 List of things I need to keep working on; not sure if that’s the Virgo in me or the Leo cusp…either way, I need to keep working at patience pretty regularly.

    I am now “following” your posts, but you can also reach out directly at SmilesinWA@gmail.com if you’d like. Peace be with you and may your journey of healing continue!

    Wayne Reynolds, 46
    Vancouver, Washington USA

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    • Hi Wayne,
      Thank you so much for your post. There are so few of us with MCL and it seems to be such a strange cancer that it is a relief to hear from someone else who is going through it. That sounds weird but I know you understand what I mean. I check the blog every day for comments etc but only post when there is something to write about, and the last couple of weeks have been pretty quiet. Well, as far as health goes they have, but I am busy putting the blogs into a book, and filling in the gaps in the middle. Just as writing the actual blog really helped me through the treatment, compiling it all – and reading the blogs back – is also cathartic and feels like it is a good completion of the cycle of treatment.
      The first few months after the transplant were pretty grim and seemed a lot worse than recovering from the actual chemo cycles. I will be interested to see how you get on, with all the support you have. One of my missions is to get alternative therapies more easily available in the hospital I was treated at – the two hospital trusts either side of us have no problem with it, but ours seems stuck in the dark ages as far as complementary therapies go.
      I’m delighted to hear that you are doing so well. The chemo before the stem cell transplant should knock the rest of it out of your system – I do hope so. Please do send me the link to your caringbridge blog. I had considered that at first, but I am not especially computer literate and wordpress looked a whole lot easier!
      Sending warmest wishes for your complete recovery
      Margaret

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      • smilesinwa says:

        Thanks for the reply! And yes, I do know what you mean about finding a strange comfort in meeting someone who shares the same rare disease, and all of the bonuses that come with it…sarcasm intended. ;-)

        The worst of my experience, to date, has just been the general malaise that follows the chemo treatments; I’ve only prayed to the Porcelain God 3x one weekend after a treatment. My R-CHOP treatments are not nearly as difficult up front, but I’m slower to bounce back. The R-DHAP therapy takes 4-5 days in the hospital before I have the strength to go home, but I bounce back much quicker. One of the drugs in R-DHAP is made up of some pretty nasty stuff (dexamethasone, which is a steroid, cytarabine, which is sometimes called Ara C, cisplatin, which contains platinum.) The R is for Retuximab, a biological agent that targets a unique protein chain found only on the cancer cells, and like a heat seeking missile, it zeroes in on those cells and marks them for destruction. My wife has renamed cisplatin to “did-flatten” him.

        When I first arrive at the hospital for R-DHAP, they set me up with IV fluids, Benadryl, and something else to fight against any possible allergic reactions. Then they give me Zofran for anti-nausea. Those two together tend to make me tired and sleepy. After the IV fluids comes the Retuximab, and it drips for 3 hours, followed by another 2-hour IV flush. Following Retuximab is the Cisplatin. This drips for 24-hrs. When it’s completed, I get another IV flush for 2-3 hours, then we start in on the Cytarabine. It drips for 3 hours, then 9 hours of IV fluids, then another 3-hour drip, and 9+ more hours of IV fluids. During all of this, I’m taking about 40mg of Dexamethasone, a steroid, to help with inflammation caused by the chemo drugs. Oh, and let me not forget that the Dex causes my blood sugar to spike, resulting (usually) in a few insulin shots during the day. Did I mention that insulin feeds cancer? I’m sure you can guess that they can’t just look at me to determine whether or not my blood sugar is too high. After 4-5 days, my finger tips ache and are chaffed from all of the pricking for glucose testing. And, like you, they have to take blood every morning at 5am. Fortunately, I have a port installed in my chest, rather than the line you had. Have you noticed that your sight, hearing, taste and smell senses have been magnified by what seems like 100 fold? Each morning they would take blood, they would disconnect me from the IV and PULL the blood from my port access. While I’m grateful they don’t stick me with a butterfly needle every day, the SMELLS of the alcohol, heparin, and solutions about knocks me over. I’m SUPER in tune with my body anyway, but I swear I can FEEL the reverse pressure when the blood is pulled into the vial. That’s NOT the kind of experience I look forward to every day at 5am!

        Yes, I knew you could relate…at least I was able to direct my medical team to do what is called “consolidated services.” I had them all come in at the same time and wake me up just once, not 4-5 times over 3-4 hours. Blood pressure, temperature, pulse/ox, heart rate, lungs…about every 2-3 hours. Yes, they warned me ahead of time this was NASTY stuff they were giving me. You’d think I was receiving some kind of Top Secret documents every time they give me something. “Name, rank, serial number please!” Ok, my humor is coming out, it wasn’t quite that bad…just name and date of birth, even though I wear a bracelet. I’m always comforted that TWO people are double verifying what they are giving me, and to whom they are giving it to…it’s far more unlikely statistically that two people would screw it up instead of just one. But if they do…twice the negligence is how I see it. (grinning).

        Well, I hadn’t planned on making such a long comment here, but sometimes when you get on a roll…you just flow with it. As for CaringBridge, I have my site locked down fairly snug to keep my posts limited to just the people that I approve in advance. The easiest way for me to give you access is to send you an email invite through the website. You can try logging into CaringBridge.org and searching for WayneReynolds67, but some of my friends/family haven’t had success getting in that way. If you aren’t able to get in, feel free to send me an email and I’ll send you a direct invite into my journal. The one benefit of using WordPress over CaringBridge is people can respond directly to your individual posts with comments. With CaringBridge guests can only sign a guestbook and, as of now, cannot directly talk to each other like you can via WordPress. The advantage of CaringBridge is that when I’m done using their site, and for a nominal fee of course, they will put all my posts and guest signings into a book for me. I haven’t asked whether they offer that same book in a PDF format so I can cut/paste into a non-fiction work. I can always go back and cut/paste each of my entries.

        Thank you for being interested in staying in touch. Even though I’ve been going along this journey with tons of support, I’ve only been connected with one other person who has this illness, but he isn’t much interested in corresponding via writing.

        W.

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