39. In Limbo

Before I get side-tracked, I want to draw your attention to the lovely Heather von St James. Heather contacted me via the blog, and asked whether I would help promote Mesothelioma Awareness Day on 26th September by including her link in the blog. This is a particularly rare and lethal form of cancer which has a life expectancy of about 10 months – Heather was diagnosed when her daughter was three and a half months old, and that was seven years ago. Heather is living proof of the importance of a positive and sunny outlook in fighting cancer; she was accused of wearing rose-tinted spectacles and she agreed, saying she had no intention of changing. How lovely. Please do watch her video on her blog at http://www.mesothelioma.com/heather then share through social media if you are able.

It was nice to get the boost of her positive energy in my current state of limbo. I went to see my consultant on Monday and he was delighted with my blood results but underlined how debilitated my immune system is and how I am really still a bit of a newborn in stem cell transplant terms. I have to say I have come on in leaps and bounds since the Isle of Wight trip, but my new-found energy and hearty appetite tend to lead me astray in terms of thinking I am back to normal now. I might be feeling good, but my system is still busily building new cells and renewing my major organs. Which, frankly, seems rather strange. Periodically I wander off into a philosophical landscape where I wonder how much of the essence of the ‘old’ me is contained in my new body. Why have some bits of it got lost or destroyed? This troubles me greatly.  According to my Bowen therapist my cells have forgotten the Bowen treatments I have had through the years, as my body reacted like a new patient when I started treatment again a few weeks ago. I used to be hypoglycaemic and had to watch my sugar intake very carefully – that doesn’t seem to be a problem now. Apparently all my childhood vaccines and immunity have been killed off by the pre-transplant chemo, so I will have to have them all again. But how come I still feel and act like ‘me’? Surely when the old cells die off naturally in a healthy person, as they do on a cyclical basis, the cells that replace them are somehow programmed to continue the legacy – all that has happened with me is that there was mass genocide and all the stem cells were replaced in one fell swoop. And since all those cells came from me in the first place they must all retain the memories they would have had if they had been replaced at a more normal rate. And if that is the case, why are some things ‘remembered’ and not others – like the vaccines? Confused? I sure as hell am, and if there is some bright spark out there who isn’t and can explain it all to me, please get in touch!

One thing my lovely consultant has done is to book me a PET scan as he wants official confirmation that the cancer has gone. Oh yes. This is the radioactive injection scenario from blog #2, only this time the whole procedure is likely to be a lot more sedate. The appointment is for next Wednesday and is at my usual hospital in Bournemouth. The PET scan roadshow rolls into town every other Wednesday and looks like that decontamination vehicle from the ET film. It comprises several vans connected by covered metal walkways; the walkways lead from the main reception area to separate, somewhat grandly named ‘cubicles’, where we wait in isolation for the injection to take effect. I have only seen half the process in the vans, as last time the scanner developed a fault and three of us had to belt over to Portsmouth which has a whole wing of the hospital devoted to ‘Nuclear Medicine’. So there is much excitement to come; I’m assuming that one of the walkways leads to the scanner, where I’ll be given instructions through some squeaky speaker, as nobody wants any contact once the radioactive injection has taken effect. It is a really strange feeling, knowing that I am dangerously radioactive to other people but feeling fine in myself. The worst part of the whole procedure is not being able to eat for six hours before the appointment. I have just started to enjoy food again, but need to eat at regular intervals to avoid feeling queasy. Just like the rest of cancer treatment, this will be a question of mind over matter.

My consultant described these early days after transplant as ‘being in limbo’, and he is absolutely right. After seven months of being in and out of hospital in one way or another, for at least two or three days a week, I have felt almost cast adrift in the last two months. I have gone from being extremely ill to (hopefully) in remission and for that I am eternally grateful, in spite of the barbaric and disgusting drugs. Once we get the scan results I will at least be able to move forward into the next camp and start to get some kind of a life back. At least a part of that life includes getting fit again, and in that department I will be greatly helped by a free 12 week membership to the local sports centre, courtesy of the hospital. I still have a big problem with my frozen right shoulder, which started during the transplant period in hospital and, although it is slowly improving, will prevent me from doing any of the things I really want to in order to get fit: pilates, yoga and swimming are all pretty difficult with one arm :-). I am having physio and Bowen therapy so I am hopeful that recovery is on the horizon. I loved having cranial osteopathy as it was uncovering an awful lot of old patterns and blocks, but unfortunately it is expensive and thus not a long term prospect for a chronic problem like my shoulder.

Just to catch you up on other therapies I have mentioned, remember the Hyperbaric Oxygen Therapy? I was planning on going back to that once my conventional treatment was over, but I had a letter a few weeks back informing me that the local centre has had to close due to funding problems. I’m really sad about that as I was looking forward to renewing my acquaintance with a whole bunch of positive people. Quite apart from the completely bizarre – and cold! – experience of the ‘dive’ it was enriching to hear their stories and how they cope with a lifelong illness like MS. Sure as hell makes a nice break from cancer! The closest centre is now Portsmouth, which is at least an hour’s journey from here, so I will have to give it some thought.

I mentioned the infra-red sauna therapy to my lovely consultant, who wants me to wait until my skin is back to normal before I go off doing something like that. Personally, I cannot wait to have a swim and sauna, but my skin is being especially troublesome at the moment in spite of my attempts to avoid the sun in recent months. Some of it is quite rough, and all of it is very dry, even though I use a whole load of potions on it, including coconut oil, and bathe and shower in the totally gorgeous but ‘friendly’ products I was given for my birthday. I also brush my skin every day. Mostly. I guess all this, the shoulder, the skin, the residual tiredness, is just to remind me I am not nearly there yet, and all good things come to those who wait. That was one of my dear mum’s favourite expressions, and I bet, when she has time to look in on me from wherever she is now, she is laughing her socks off. I can imagine the purists amongst you itching to comment that of course there won’t be socks in the afterlife, but I am betting there are. I gather that heaven/the hereafter/the interlife, whatever you want to call it, is supposed to be nicer and more fun than here, and I really would expect that ‘existence’ to include laughter. What would life (or not-life-but-something-else) be without a really good laugh, the sort that makes your tummy ache? You can’t be too precious about these things.

Wishing you sunshine and much laughter

Margaret  xxx

Advertisements

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
This entry was posted in Uncategorized and tagged , , . Bookmark the permalink.

7 Responses to 39. In Limbo

  1. Sue Williams says:

    Sunshine and laughter right back, Margaret!

    Good question about the stem cells not ‘retaining’ their memory. Were the cells harvested subjected to radiotherapy or other treatments? If so, this might have damaged their immunity. I also seem to remember that you are not immune straight after vaccination, but that the vaccine helps your body ‘learn’ to respond better when it encounters strains of various illnesses.

    Anyway, good luck with the PET scan.

    Warm hugs xxx

    Like

    • Hiya,
      No, the cells weren’t subjected to any further treatment once they were harvested. Just tucked into a nice, freezing container ready for future use. So whatever was in me at the point of collection is in them. The collection followed a big dose of Rituximab, which should have killed off everything. Which is where my ‘not understanding’ starts.
      I’m also looking into the possibility of homeopathic vaccinations. But again, I won’t need all of them. I had German measles when I was a kid and apparently I will still have immunity for that. It is all very confusing!
      Mxx

      Like

  2. ronnie says:

    Hi Margaret – I had good news last Wednesday that my tumour has shrunk from 5cm x 3cm to 3cm x 2cm and my oncologist is really pleased with me – I have also had a lot of healing done at New Wine and in my church – it was great to hear and she said it was also to do with my positivity and Bill’s – he has been my strength as he would never and will not let me get down and all the prayers I have received from lovely people – we are so thrilled xxx

    Like

    • Hi Ronnie,
      So pleased to hear the good news. Are you having any further treatment?
      Sending love and light to you both,
      Margaret xx

      Like

      • ronnie says:

        Hi Margaret, Apparently they cant give me any more chemo or radio therapy but she said that the part of the tumour left might be scaring from the radio therapy. She said that she doesn’t usually give follow up scans but she will arrange for me to have one after my next visit in December. Obviously if I have trouble swallowing again I just phone her secretary and she will arrange for me to see the oncologist. I’m sure there are other things they can give me and I know that they will insert a stent so that I can continue to eat so we are still praying things are going in the right direction. God bless you Margaret and I always mention you in my prayers for the sick.

        Ronnie xx

        Like

  3. As I understand it, memories are not stored in the body but in the Akashic Records – the brain accesses this information in a manner analogous to cloud computing: the information is not stored in the individual computer (body / brain) but on the internet (Akashic Records) – the individual computer (brain) merely accesses this information and acts on it.

    It’s a shadows on Plato’s cave kind of thing. The body and physical brain are like the scoreboard at an athletic event: the scoreboard reflects what’s happening on the field, but it doesn’t create it – it merely records it. so too our bodies and brains aren’t creating anything (all “creation” takes place in / is directed in dreamless sleep). Our bodies – whether in waking consciousness or dreaming – are merely counters, dummies as it were, walking through a pre-scripted movie which we are projecting from a position in dreamless sleep.

    make sense?

    Bob

    ps. I’ll bet your PET scan is clean.

    Like

    • Hiya,
      Thank you for that. What I am hoping is that the healing that has taken place will correct the possibility of the new cells turning cancerous too. It’s almost like the nature/nurture debate in my opinion; everyone carries within them the potential to develop cancer, but not everyone does. If my cancer really was due to environmental toxins then maybe by being more careful I can avoid a recurrence. But then it is said that the chemo itself causes the cancer to return. All very big questions for a tired brain!

      Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s