37. Hair We Go Again

It has been a strange week, but by far the most exciting bit of it has been the realisation that I really do have hair now. See pic of me in the sunny garden as evidence. In fact this morning I thought, “I really should wash my hair”, which after seven months is a very strange concept, I can tell you! I am so pleased to ditch the headscarves. As the warm weather has continued (for which I am deeply grateful, of course) they have become more and more uncomfortable, and somewhat out of place with summer dresses and the like.

M in garden

It is usually about this time of year I start getting really sad that the summer is ending – mainly because it hasn’t even got properly started and I feel I am being grossly short-changed on my sunshine quota. I seem to suffer from SAD so we try to escape for some winter sunshine towards the end of the year – a nice, sunny holiday seems to set me up to last right through until the Spring. This year, however, my wildest dreams have come true, in a funny kind of way. Enforced rest is irritating at the best of times for someone who is usually very active, but it is especially unpleasant when accompanied by an outlook of grey skies and rain. This year, however, the British summer has excelled itself, so although I am banned from actually sitting in the sun, I have been able to sit outside under the parasol and enjoy our lovely sunny conservatory. It makes a massive difference to my state of mind, which is still quite fragile.

Enough of the weather, and I promise I won’t spend an entire paragraph on it again! I mentioned in the last blog that the exercise of Mindfulness is on the whole, very helpful. However, it is a full time job, and I can’t at any point let my guard down – this has to be a life’s work. The reason I say this is that it is easy to praise any spiritual exercise when the going is easy. How about when the going gets tough? That’s when I get to see how much attention I have been paying in class. My cranial osteopath pointed out that I often use the word ‘your’ as opposed to ‘mine’ so I am trying hard to be present in what I write and not fob it off on you. He has a point. Using ‘your’ is distancing myself and almost conveniently convincing myself I am writing about all of us. This isn’t the case, and it is a salutary reminder about coming home to my mind and body. I am leading a reasonably sheltered life at the moment in an attempt to build my weight and strength back up after the last few weeks. Stephen is still doing most of the shopping and I haven’t been into work much; what this means is that when I do venture out I feel unexpectedly vulnerable, and suddenly feel swamped by everything and need to cry for no obvious reason at all. Stephen was completely bemused when I accompanied him to Sainsburys last week and returned in tears from an innocuous trip to track down coleslaw. Simple activities like mixing with everyone else in a shop can completely overwhelm me in minutes, as I’m just not used to the amount of energy that is generated by a lot of people rushing around doing their shopping – it underlines just how depleted I still am. I feel the desperate urge to retreat to my safe little bubble at home as soon as possible. This is clearly one of the areas that needs to be worked on, but it is giving me a massive insight into other mental states that I haven’t experienced before.

The other thing that cuts straight through my newly acquired mindfulness strategy is the  reminder – when I’m not expecting it – that cancer is out there, alive and extremely strong. We had some really sad news yesterday. A neighbour’s daughter was diagnosed with breast cancer a couple of weeks after my own diagnosis – so literally just before Christmas. She had a double mastectomy then chemotherapy for other, multiple tumours, which didn’t work. She died two weeks ago. I never even met the lady but I cried for her bravery, and for her family, and railed against the savagery that is cancer. I am part of a support group on Facebook and a few days before this news I had read an equally upsetting post from a member. As far as she was concerned her PET scan results were expected to be fine when she got them the next day; she was so excited about the freedom that knowledge would bring and she was looking forward to a new life, cancer free. The appointment came, and not only was her cancer back, it was so widespread she has been given three months to live. I was appalled. I could still see the two posts, before and after, on my screen. This killer is so insidious. Its first appearance isn’t even obvious to most people, and it’s like walking around with a ticking bomb inside. I will be having my own PET scan in the next month or so, and whilst we will obviously be delighted if it shows I really am in remission, I can’t take that as a guarantee. All it means is that at the point when I was scanned I was clear. I have seen and heard too many stories on the cancer ward to take anything for granted. Please don’t think I am being negative. I’m not. I am being realistic about the terror that cancer buries deep in my mind – and it is a terror that I believe can never be expunged. In the first version of this post I had written ‘your mind’ and Judy kindly pointed out that I had just unwittingly distanced myself again. It isn’t your minds, it is MY mind. I have changed it, which now opens a whole new can of worms and provides much food for thought. I clearly need to read Thich Nhat Hanh’s lovely book on fear again. Thank you, Judy :-).

A fellow astrologer acquainted me with a wonderful phrase many moons ago, and it is perfect for this scenario: ‘This is clearly an AFOG’ (Another ******* Opportunity for Growth). Yep. A situation I cannot change and have absolutely no choice about, so as somebody famous once said, and I believe I might have said it before, “The only way round this is through it”. Harsh but true. Getting through any illness takes at least as much mental strength as it does physical. A possible way that cancer differs from many other illnesses is that one has to be in it for the long term, so it is essential to build up the stamina to keep going – which is about where I am at.

When all this started you will remember I had bags of energy to go out and find alternative remedies and follow up every possible lead that would help me on my way to health. I am absolutely sure that the remedies, the juicing, the change of diet, etc., are what got me through the cycles of chemotherapy in such good shape. I arrived at the stem cell transplant thinking I could get through it in a similar style: a bit of sickness, a bit of feeling grotty. I took their warnings with a massive pinch of salt and expected to be back in action very quickly. Because of this, I was in no way prepared for the long and uphill slog that this last section has become; it must be a bit like getting to the end of a marathon with only a massive hill between you and the finishing line. The trouble is that I have gone off a lot of the things that worked for me earlier in the treatment. This last month has been especially difficult as I have had to go back to tiny meals every hour or so, although thankfully that is now improving, but my taste buds are still very finicky. I can’t face the juices we were making, and I certainly can’t stomach the vast platefuls of greenery I was tucking into, so it has been a matter of trying to find what I can tolerate. I lost weight again in recent weeks, which was annoying, especially as I obviously need to be absorbing nutrients from my food to get stronger. I haven’t been able to eat enough calories in recent weeks to stop the weight loss, then I remembered the wonders of whey protein. Several people had suggested getting some of the protein drinks we were offered in hospital, but they are all milk based and filled with stuff I really don’t want to put into my system – so I dusted off the smoothie maker and we have been having lots of fun with berries, coconut water, soya milk and bananas – and big spoonfuls of protein powder. It seems to be starting to work as although I haven’t gained any weight, at least I have stopped losing it, and my strength is improving. The advice from the hospital is to do a tiny bit of exercise each day and gradually increase the amount. I remember the transplant co-ordinator saying that I really wouldn’t feel like it but that I needed to push myself. She is so right! I have to say that although I enjoy a certain amount of physical activity when I am well, I would never have made a world class athlete – as soon as it starts to hurt, I stop. I really have no interest in working through the pain barrier or pushing myself that bit further. In fact, I would go so far as to say that I can see the pain threshold approaching and take devious measures to avoid it, like stopping to retie my shoelace. I have many such excuses. But I’m now in an interesting scenario, where again I have to dig deep and change old habits: if I want to get well, I have to push myself – it is the only way to build up stamina, and a few half-hearted leg raises aren’t going to do it.

Stephen and I are off on a little jolly next week to the Isle of Wight. He hasn’t been before and I last went more years ago than I care to remember, so we are really looking forward to our first adventure since this whole debacle began. We desperately need a change of scenery as we have both spent far too much time within these four walls in recent months. We are staying in a hotel overlooking the beach and will have a sea view and balcony, upon which I am planning to relax with a good book while Stephen goes for some bracing walks. I don’t think the hotel has a lift so I am pleased to say that I will have to exert myself on a reasonably regular basis just to get back to the room. All this is good, of course, and I look forward to returning to the blog a bit fitter than when I left :-)

Wishing you a lovely weekend

Margaret

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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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6 Responses to 37. Hair We Go Again

  1. Bernadette Brady says:

    I love your picture Margaret – you are an awesome lady!!

    Like

  2. Sue Williams says:

    You’re looking good, Margaret. And you’re absolutely right about cancer…it is an assault upon our peace of mind.

    Let’s hope and pray for a cure, the sooner the better.
    x

    Like

  3. Stephanie says:

    You look really cool, Margaret! Good luck with the PET scan and you & Stephen have a great time on the Isle of Wight. I went there on holiday many years ago and had a lovely time.

    Love & Light

    Stephanie
    x

    Like

  4. maria barry says:

    Enjoy your jolly, I loved the IOW when my biggies were littlies!!! I hope you are through it and out the other side :)

    Like

  5. Dolores. says:

    Hi Margaret, sh glad to see you home again.. love the new ‘Gamin” hair style.. Im off to the USA on a 5 week lecture tour so will contact you again when /i get back inOctober.. take care of yourself and enjoy life

    love

    Dolores

    Like

  6. Hi Margaret,

    for what it’s worth, I’m channeling that you are in remission and that you’ll be okay. Just take it easy (real slow), and try to spend as much time out in nature (in the woods or on the beach) as you can.

    vis a vis the wanting to cry all the time and being afraid to go out and have to deal with people … I’m like that, and I haven’t even had cancer.

    xoxo,
    Bob

    Like

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