46. The Dark and the Light

This blog has had countless beginnings, many middles and quite a few endings. It has been wandering around in my mind since Moonfleet Manor, but has remained infuriatingly incomplete. I seem to need a picture of how a blog will end up, or at least a theme, before I can start writing; there wasn’t a sense of direction before, but in the last few days I have started to gain an inkling of where it wants to go. So please join me on a short journey which takes in several weeks, and will somehow end up wherever it needs to. Or so I hope!

My enforced, grounded state has been somewhat alleviated by some good, fun, browsing through secretescapes.com, my second favourite website after cruise.co.uk. Secret Escapes specialise in very nice breaks and holidays that started out stupidly expensive, but are vastly reduced due to late availability or whatever. It is much more fun than lastminute.com, as you can just browse through what is available and see what appeals. I really can’t manage those websites where you have to enter a specific date, then after lots of searching it tells you it doesn’t have anything. Those drive me insane, so anything to do with trains, planes or package holidays is pretty much ruled out as I might just lob the laptop out the window in frustration before I get an answer. So… having had a good sniff through all the things we couldn’t do as I’m not supposed to fly very far, we happened to see a two night break in Devon for four people at a Diamond Resort. Think luxury Centerparcs. Very nice. A short phone call to John and Lyn and it was all booked. Yay! Four Go to Devon! That was the beginning and title of the first version of this blog. However, things were very doubtful with all the bad weather, and at one point I phoned the resort to find out if they were flooded, or even accessible. I was humorously informed that the resort had a lake and a river, both of which were staying where they were supposed to, and that no guests had so far been rescued by boat, at least, to their knowledge.

A couple of weeks and a long drive later (thank you, John), we arrived at Woodford Bridge Country Club near Holsworthy in Devon. Based on a traveller’s inn built in the 1700s, the site has grown into a pretty, rambling little haven that does indeed have a small lake and a babbling brook running through it. It also has a spa with a steam room, pool and sauna. Result! The grounds are beautifully lit up at night and are really quiet even though it is close to the main road. Needless to say, we weren’t going to be staying in the really cute thatched cottage that is used in the advertising, but I am getting wise to these things. If it looks too good to be true, it almost definitely is. I took the precaution of calling the resort before I booked and established that, as we weren’t paying a zillion pounds a night for the honeymoon suite, we would in fact be staying in a very modern lodge without a shred of thatch to its name. But it was lovely. And the best thing about being with good friends is that we could just all chill out and be ourselves. I am delighted to report that Lyn and I thoroughly tested the spa facilities and found them to be up to our exacting standards. One of the goals of my free membership of the Littledown centre (see previous blog) is to gradually improve my stamina through sustained exercise, which I have to score on a scale from 9 (no effort at all) to 14 (hard to talk and exercise simultaneously, heavy breathing with mouth open). I’m pleased to say that I managed 10 lengths of the pool at about a level 12, but with Lyn around there was no way I would choose to exercise over talking, so we repaired to the hot tub. The next day we all went to explore Clovelly, which is a little coastal village stuck in a time warp, and wholly owned by the National Trust. The only way to reach it from the Visitor Centre is via an extremely steep, cobbled, street which leads down to the bottom of the village and onto the beach. By the same token, the only way up is via an extremely steep, cobbled street, which leads up to the car park. I was walking with Stephen at the time and we both had to concentrate quite hard on not slipping on the wet (of course) cobblestones and just keeping going. That rated about 13 as it really was hard work and I nearly had to stop talking, which I can assure you doesn’t happen very often, so I am pleased I was able to exert myself in such a fashion. That evening, exhausted from our outdoor adventures, we thoroughly tested the restaurant, which rated a relaxing 9 on my exertion scale; it is good to pace oneself in these things. One of the unexpected bonuses of not being allowed out of the country is that we have discovered some lovely places and come to appreciate this beautiful country a lot more than we did before.

So a lovely weekend was had by all, but on my return I had to go to pay my compliments to Bournemouth Hospital. Only a different department this time. A long time before I was ill I was having problems swallowing, and as nothing was picked up in all the scans I sort of stopped thinking about it; it has become more irritating of late so Joe booked me in for a gastroscopy, Just To Be Sure. I wasn’t especially excited about having a pipe pushed down my throat, but as Stephen has had this procedure and was very brave I had to be brave too. So brave in fact that I told him he could just drop me off and come back later when I was finished. I was seen very quickly, but in the short time I was in the waiting room I realised that my companion was in fact one of the nurses from Ward 11. She was pretty worried about her condition and things weren’t looking too good when I caught up with her in recovery a bit later. It was very strange seeing her in there and my heart goes out to her as she faces an uncertain future.

One thing that being in hospital has shown me is that the nurses, on the whole, have a huge amount of compassion and really do want to make you as comfortable as possible; I took full advantage of their kind offer of a sedative and was soon very much away with the fairies. The gag and choke reflex as they passed the tube down my throat rapidly became a distant memory and I had a nice little sleep for a while afterwards. Stephen came to get me and we went happily home after being assured that nothing sinister had been found except a slightly inflamed oesophagus. In fact the only thing of any note was a hernia – which was probably the result of my violent worship of the porcelain goddess after the chemotherapy. The gastroscopy episode was to be the subject of my second attempt at a blog – Down But Not Quite Out. But the blog was still not ready to come out of the shadows.

I recovered almost instantaneously from the gastroscopy, and as my fitness improved I was starting to bounce off the walls; the dark moods from my previous blogs were fading, and I was feeling more alive than for a long time. It really is true that exercise produces happy hormones – the more I exercised the better I felt. Funny thing, then, that at around that time I had a text to my phone from my favourite website cruise.co.uk. We booked a cruise with them a few years ago and they have obligingly kept us up to date with special offers and late availability ever since. So kind. Absolute torture while I was ill, but with a much needed holiday becoming a distinct possibility, our minds opened up to exactly what was on offer. And what was on offer was so crazy that we decided we had to book something. The trouble with cancer of course, is that it is very difficult to get any kind of insurance of the travel variety, even if you are in remission and out of any kind of treatment. I was sensible enough to call a few people before we booked, as I didn’t want to be in the position of having a lovely holiday all ready and waiting but no insurance to cover me.

My first call was to Catherine, the MacMillan nurse who has been our fount of all knowledge since all this started. She laughed her socks off when I said we were flying to Barbados to join a cruise ship. “That’s not quite Santorini, is it Margaret?” she chuckled, while she looked up possible insurers. I reckoned that if we added the Barbados flight to the return flight from Malaga (this was a repositioning cruise – joining in Barbados and leaving in Malaga) and divided by two we would have the equivalent of two shortish haul flights. Which Joe had said I could do, hence the Santorini comment. And anyway, what was the problem with a long haul flight? Well apparently long haul flights fly higher than short haul, which if your blood is thin can cause nosebleeds and other complications. Wasn’t too bothered about that. There is also the risk of deep vein thrombosis, so I dug out my very fetching pressure socks kindly donated by the hospital during my long haul stay last June – DVT, sorted. Increased exposure to germs. Judy sorted that one for me. She lent me her negative ioniser which looks like a computer mouse and hangs around the neck with a nice, very visible red light. We got a few weird looks for that one, I can tell you. Armed with the ioniser, Preseli Blue stones for jet lag and a metal healing plate, we were all ready. All that was left was the insurance. I can’t imagine there is a single reader out there who has had a good experience with insurance companies. As somebody once said to me, it is paying through the nose for something you hope you won’t need to use. Then if you do need it, they will find a way to wriggle out of paying up. As soon as you mention the ‘c’ word, doors start to slam in your face, or the price multiplies to greater than the cost of the holiday. However, with the help of the travel agent we managed to find a company who would insure me for the whole year for a very reasonable price. Which means of course that we will need to make good use of it in order to get our money’s worth :-)

So – all sorted, all I had to do was book it. How scary. We raided our savings and started to think about flying off to the sunshine. That was nearly a blog called ‘Hey – We’re Going to Barbados’ but it didn’t feel right either. I like to try and write about what is going on in my mind and heart in these blogs, which isn’t always easy as those thoughts are not always immediately accessible. Over the last few days I have given much thought to what the blocks are and why it isn’t easy, and I now realise it is because even while the exciting stuff is going on there is always an undercurrent, or shadow of worry over something else. Stephen summed it up beautifully just now: he reminded me how the yin and yang symbol of Taoism has both black and white in both halves. You can’t have one without the other. There is no light without dark, no happiness without sadness as a contrast. It is the human condition to have conflicting feelings, and it is something that causes most of us grief at some point in our lives. We had just booked the holiday, and a tiny bit more of me had moved from the ‘worried about relapse’ to the ‘I’m well and I’m going to enjoy life’ department in my heart when I read of the death of a fellow MCL sufferer. Wayne Reynolds was an extremely bright and positive person who read my blog just a few months back and got in touch. We exchanged several emails; I looked at his chart and we discussed many things over email, including his desire to be a published author. He was also writing a blog about his cancer experiences. He was diagnosed a lot further down the line than me, he had several tumours and bone marrow involvement so although he was younger and fitter than me, he had a monumental battle on his hands. I knew the last treatment regime had failed to eradicate the cancer, but the last I heard he was going in to be treated with Ibrutinib, the new kid on the block of chemotherapy. I was utterly shocked to read just a few days later that he had died. I was in tears in seconds, which on one hand is crazy as I didn’t even know the guy; I was crying for his courage and his faith, the loss of yet another person to this vicious killer, and for the family he leaves behind. But on the other hand I was also crying for the fear that all cancer survivors and their families have to learn to live with. ‘There but for the grace of God….’ In this elite club the losses are felt far more keenly than, say, somebody keeling over at the 9th hole on a golf course, so when a member dies it is a pertinent reminder of our fragility and impermanence. That was nearly another, short blog called ‘Gone But Not Forgotten’, but again, the time wasn’t right.

The days passed very quickly in the countdown to our holiday. It is only by the grace of Cathy that I can get away at all, and we were frantically trying to clear any backlog before I left. Stephen was also working every hour possible as the countdown continued. This felt like more than just a holiday – it was a return to normal life for me, and a much needed break from all reminders of the past year. We had deliberately chosen a repositioning cruise as it would give us six lazy days at sea, in which to do nothing. My intention was to try and finish turning the blogs into a book, but it was much harder to type from a sun lounger than anticipated :-). I digress.

In the midst of the pre-holiday chaos and workaholic-ness, I managed to have a conversation with my elder brother, who lives in London. In saying that, what I really mean is that I have two older brothers, and Richard is the younger of them, so still older than me. So he was the mixed up middle child, making me the youngest child and only girl. I hasten to point out I was not at all spoilt or precocious. I am sure they will back me up on that. Haha. We haven’t been in touch very much through the years, getting along with our individual lives as you do, and meeting up once a year at Christmas, but I really look forward to those times when we are all together. Each year the (only) niece (she’s not spoilt either) and nephews get even bigger, and all of a sudden they too are adults. Of course my brothers and I have been quietly aging too and those differences are also noted. But one difference that really stood out from the others was that Richard’s partner of 30 years, Rosemarie, was starting a mental decline, and in 2011 she was diagnosed with early onset Alzheimer’s Disease, which unfortunately runs in her family. The reason I am comfortable telling you this is because Richard has written a blog about it – link to follow shortly. I suppose like many others I assumed this disease would slowly and insidiously rob us of her personality and uniqueness, which was bad enough, but I was shocked at Christmas to see just how much she had deteriorated. Things had got very much worse by the time I spoke to Richard a couple of days before we went away. I had no idea things were so bad. All of a sudden I was on the outside of a heart-wrenching situation that I could do nothing to ease. Just like when I told my family I had cancer – except this time I was on the other side. My brother and his family are incredibly strong and I was so impressed and humbled by the way he was ‘keeping on, keeping on’.

I flew off to the sunny Caribbean with them firmly in my heart. I hadn’t been able to tell him we were going away during that phone call. It seemed cruel in the extreme to talk about flying off to the sun when he was in such a painful place, and yes, there was a part of me that felt guilty. How can we feel happiness and sadness at the same time? How can we survive darkness and light, humour and grief, holding on and letting go? How do we do it? I thought a lot about this on the flight and came to the conclusion that me feeling bad about these things wasn’t doing any of us any good. Guilt is, in most cases I think, a Pretty Bad Thing. In his book, ‘Messiah’s Handbook – Reminders for the Advanced Soul’, Richard Bach (who I have loved since ‘Bridge Across Forever’), says “Guilt is the tension you feel to change your past, your present, your future, for someone else’s sake. It’s your tension, let it go.” Hmm. Bears a bit of thinking about. I realised (not for the first time) that we can have two conflicting emotions, and it doesn’t mean that one negates or detracts from the other. My brother would definitely not have wanted me to be sad on holiday because of his situation, just as someone who has lost a loved one shouldn’t feel guilty about laughing and having a good time when the moment arises. I remember after my parents died that I felt really bad if I went out for a drink with friends, or did something that brought me out of myself. Those lovely people at CRUSE (bereavement counselling) helped me to see that the emotions can co-exist and neither of them is depleted because of the other. I have to say though that this is still very much a work in progress.

I had something else to take my mind off both Richard and the sunny Caribbean Sea though. Just before flying I had a nagging toothache which erupted into a full hamster cheek by the time we got to the ship, so I had to visit the very swish onboard medical team. Knowing that I’m not supposed to get any infections I was understandably concerned and realised I would have to get it sorted out as soon as possible. There are no dentists on board; presumably any staff with toothache just get sent to the dentist in the next port, so the doctor prescribed some heavy duty antibiotics for me. My immediate thought was, “Brilliant. On holiday, lovely cruise ship, Captain’s Gala night and Sailaway parties galore, and this means no alcohol”, so I just had to ask the question. I said, “I know this is a really cheeky question,” and got no further as he cut across me, big grin on his face, “Yes, you can have alcohol. Absolutely every single person asks that, and with this one, yes you can.” You can imagine we all had a good laugh, and once the swelling went down I did manage to force down a glass of wine or two.

So yes, we had a fabulous time, met some lovely people, and the days slipped by until all of a sudden we only had a couple of days left. We were starting to relax – finally! – and really didn’t want it to end. Some lucky people stayed on for extra time as the cruise line were offering silly deals, but we needed to get back for many reasons. Even when you are having a really good time, there comes a point when you have to get back to the everyday business of life, and I don’t think I would really have it any other way as it is the mundane acts of shopping and cooking and looking after the cats, oh, yes, and working, that keep us grounded. But going away, and especially being out of touch with the world as we traversed the Atlantic was very good for the soul. I had a lot of time to ponder the meaning of life and to think about the people I really care about. We bought some internet time which passed in the blink of an eye, as I really needed to keep in touch with work. That failed on most levels due to the patchy connection, but I did manage to read Richard’s latest blog which was dated after our recent conversation, and it seemed even more had happened since then. I hadn’t read any of it before, in fact I wasn’t even aware he had written one; while I was away he sent the link as promised. At the time I clicked on the link I was sitting in a lovely sunny bar at the top of the ship, gazing out over empty seas. The pain of losing somebody to Alzheimers hit me like a brick and again came the tears. When I finished reading the blog I sent out a silent prayer, and a lot of love, for all the families that are dealing with the slow loss of their loved ones to this horrible condition. Here’s the link if you would care to read it http://otherkosh.blogspot.co.uk/. Even if you don’t, I would be grateful if you would include him and his family in your prayers. I hope it helped him to write it, just as I have received huge support by sharing my experience. In one of his earlier blogs Richard says that he always thought that support was something you gave to someone else; he had never thought about receiving it. I suspect that is true for all of us and we don’t realise it until the moment when we need it most. All of a sudden I am on the other side. I have regained normal life, quietened my fears through sharing them, and am ready to reach out to others. Which is why this blog wasn’t ready to be written all those weeks ago.

 

Wishing you sunny days

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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7 Responses to 46. The Dark and the Light

  1. Joe Tomsic says:

    Your writings are great Margaret. Thank you. Still doing good over here. MLC still in check and going on four years.

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  2. susiejoiner@aol.com says:

    Whatever you write always, always, has me gripped. Why? I think.. because you always aim to let us in, to give us the truth I have read your brother’s blog too. My mother suffered from infarctions. My Mother-in-Law suffered from Alzheimers and became part of a hospital trial, during which they fed her on additional minerals and vitamins which worked to the extent that she was happier and could among other facts suddenly recall the name of the Prime Minister. You probably know that the latest research suggests AD is the third diabetes, and that sugar (to include alcohol) causes (proliferation of?) the amyloid plaques… God save me from Alzheimers or dementia either as a Victim or a Carer. We will pray for them both’, Love Sue xxx

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    • Hi Sue,
      Thank you so much. It is one thing going through hard times yourself – you just get on with it I think – but it is quite another watching close family go through hard times. Your prayers for Richard and his family are very much appreciated.
      Mxx

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  3. maria barry says:

    Hi Margaret,
    a friend has just been diagnosed with cancer, and I have been trawling back through your blogs for tips and advice. So thank you for this blog, and much love to you and your extended family, for sharing. xxx

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    • Hi Maria,
      I am so sorry to hear about your friend, and I hope you found something that helped. If they are having chemo the Vit A is absolutely essential. My thoughts go out to them. Thank you ,as ever, for your support.
      Mx

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  4. Bob Makransky says:

    Hi Margaret,

    sounds like you’re doing good! keep it up.

    Bob

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