Strange times

I think I’ve finally started to get in touch with my anger and, following on from my blog on how to be happy, has led to a short break in my blogging. When I was diagnosed with cancer, I didn’t feel angry at all. I felt shocked, frightened, bewildered and many other things but I didn’t feel angry. I never said “Why me?” or “It’s not fair”. I just accepted that I had cancer – and a pretty horrible kind to have (although there isn’t a nice kind to have) – and got on with things. You know how it goes, there are so many appointments with different doctors, lots of different tests and procedures to undergo that there wasn’t time for me to even pause to be angry. But this week, I have found myself getting angry. Angry with my compression sleeve, angry about my lymphoedema, the way my prosthesis doesn’t fit properly. I feel angry because this will not change. This is how it is. Forever. I may be able to opt for major surgery in which case my prosthesis may become redundant but I am not sure that this is something I am willing to go through. So day after day, I must get up and put on a compression sleeve so tight I can’t even pinch the fabric once it is in place. You know how you can pinch fabric with your thumb and forefinger to pull it or move it? Well, with the compression sleeve even that is impossible. I must massage my neck and across my chest several times a day to encourage the lymph fluid to drain away into other nodes. I must moisturise my arm every evening, starting at the top and gradually working down. It’s a real pain and I am more than fed up with it.

I know. I’m still alive. Stop moaning.

Our newish neighbours treated us to a fabulous Stand-Up Row in Public the other evening. We are not sure what happened but, sitting quietly watching television, we become aware of a lot of shouting several doors away. A group of people stagger past the front garden, pushing, shoving and swearing copiously. They disappear from view, shouting and continuing with an Oscar-standard stream of swearing and then we hear a noise, as though someone has come to grief in some way. We then hear more shouting involving someone having had far too much to drink and someone touching someone else’s girl. The procession begins to move back the way it has come only this time they proceed down the middle of the road. The women who have been shouting that the man has had far too much to drink suddenly stop by a car, open the doors and get in. The man takes the driver’s seat and, after a bit more shouting, off they go. All we can hope is that this is not the man they have all been shouting about.

But this coming week will be a full one. On Monday we travel north to the house of 2 friends who, after many years of thinking about it and shilly-shallying, are getting married. Mark is to be Best Man. I am to take care of Dog and maybe deck him out in something fine and resplendent, suitable for such an occasion. We come back on Wednesday and then on Thursday are being taken to the races at Goodwood on Ladies Day. This is courtesy of Macmillan for whom I have given a few talks to new members of staff and staff who might never meet the end user. My psychologist and my lymphoedema nurses are both funded by Macmillan who take a lot of the strain in the NHS in cancer care. I am truly grateful to them and now they are offering me this wonderful treat. I have never been to horse racing before so this will be a real first for me, another one to add to my year of ‘doing things differently’. It feels slightly incongruent that the thing I am most angry with is also the thing which is inadvertently offering me opportunities. Without cancer there would have been no Dragon boat racing, no Penny Brohn Centre and the new friends I met there and at my beloved Maggie Centre. No make-up sessions, no wonderful photo shoot from Mindy Coe, no lovely giggly lymphoedema nurses.

I can be angry and grateful at the same time, I decide. Although being grateful for cancer is not an emotion I ever thought I would express. Strange times, my friend, strange times.

How to be happy

Today is the day I have my first haircut in nearly 18 months. Is my hair running rampant and flowing down my back? No, chemotherapy has taken care of my hair for the last 18 months and removed it in great clumps so my lovely hairdresser, Lynn, shaved it off for me after my first session of chemo. It was done with love and great tenderness, too, and allowed me to feel that I was more in control than I probably was. It is only natural that my first haircut is with Lynn. She has been cutting my hair for years and we’ve shared details of our families, friends, aspirations and heartache. Although we keep in touch on Facebook, it is lovely to see her and we catch up on all the stuff we’ve missed in the last year or so. The end result is great and I am happy to have my unruly curls removed and to become 2 inches shorter. My new hair has decided to grow vertically and shows no sign of doing anything except reaching for the sky so it needs reigning in.

The sun is shining, the sky is blue and I feel reasonably energetic so after visiting the hairdresser, I decide to go shopping with Mark. We go to buy fruit, herbs and freshly baked bread from a local Iranian-run shop as well as a new potato-peeler (the swivel on mine has gone awry) and some wax for my freshly cropped hair. As we stroll along, we bump into some old friends we haven’t seen for a long time. The meeting highlights to me how differently people can see the world. The woman tells me about her children who are both employed and happy but it’s not good enough. The eldest is a successful freelance journalist whose income is erratic meaning that in order to buy a flat, he has to rely on his partner’s steadier income in order to secure a mortgage. My question – is he happy? is met with a ‘yes, but’ response. I point out they are in a partnership so it’s maybe not so strange one partner will put more money in than the other. I explain my cancer was aggressive and that it’s likely to come back but that today the sun is shining, the sky is blue etc etc and that I am happy. For me, life doesn’t have to be perfect in order for me to appreciate it and be happy. It’s still not good enough. The younger son, also gainfully employed, decided after a year of University that it wasn’t for him and just walked into a job which keeps him busy and well-paid. Again, it’s not good enough. He didn’t discuss his unhappiness with University and made the decision to leave on his own. He’s been working now for 3 or 4 years so is secure and has clearly made the right choice. Again I ask – is he happy? The response is the same ‘yes, but’ and I feel rather sad. My friend looks stressed and vexed about her offspring and yet they are happy, employed and healthy, making mature choices and getting on with their lives. I don’t get it.

At the beginning of our conversation, my friend’s husband queried the fact that I lost my hair through chemotherapy. He tells me with great authority that there is chemotherapy now that does not result in hair loss as though I had chosen the wrong kind. I feel rather insulted that he seems to think himself an expert on the matter and choose to concentrate on my female friend. While we have been talking, Mark is talking to my friend’s husband. They talk about music and anything my friend’s husband feels he is an expert on which means the topics range far and wide. At some point in the conversation he tells Mark that his younger son has a side-line to his main occupation and produces erotic furniture. Walking home, we throw the subject around between us, wondering what it is and whether it resembles the contraption George Clooney’s character in Burn After Reading was making. Is it functional in the – well, functional sense or is it decorative with parts of human anatomy lovingly recreated in wood? Are they chairs with penises as the arms and legs? Could you relax in a chair with a pair of breasts to nestle into? I suspect nestling is not really the aim of it but we decide we don’t really want to know more.

At home we relax on our conventional furniture and eat our fresh bread with salt beef and dill pickles. It has been a good day and we are happy. And that’s all we really aim for.

It is tomorrow

It is tomorrow and I am still awake. I went to bed on Monday night and come Tuesday morning, I am still tossing and turning and far from sleep. ‘Sleep Hygiene’ they keep telling me until I want to tell them to shove their sleep hygiene where the sun don’t shine. Don’t read in bed. Don’t listen to the radio in bed (What, not even Radio 4? ‘No’ Spoilsports). Duly I go to bed ready to just fall into a wonderful oblivion but it’s not happening. I am hot. My arm itches where it was bitten by a random insect in the night. AND it’s my lymphoedema arm and if only my breast care nurse would get back in touch with me, she could give me some sterling advice about what to do. Meanwhile, after giving it 45 minutes, I creep downstairs as quietly as possible. This is made tricky by the fact that a) I do it in the dark b) Bunty likes to walk half a pace in front of me, in both brightly lit and darkened circumstances c) our house is over 100 years old and the stairs creak louder than my joints. Once downstairs, I sidle into the sitting room, hoping not to wake Dog. He is peacefully asleep, his head lolling out of his basket with not a care in the world. He sleeps with a clear conscience, a full belly and an empty bladder. I feel I have all those attributes, too, so why is sleep not choosing me to be on its team? I am tired. Lord knows, I am tired and my eyes are wanting to droop and close but that’s as far as it gets.

So the tomorrow that is now today sees me taking 2 sleeping tablets (see if you can spot when they kick in) and writing drivel on my blog in the hope it will send me off to a peaceful sleep where I will NOT dream about politicians (I had the most appalling dream last night where Michael Gove was very rude to me and I threatened I would ruin his career) but will sleep like a baby only without the nappies and breast feeding.The last two nights’ sleep have been fantastic due to strenuous daytime exercise but I can’t do that every day. Joints complain loudly when I want to stand up let alone do something athletic. One of the best reasons why Dragon Boating suits me is that it can be done whilst sitting. Yes, it’s strenuous work but it’s sitting down and this I like a lot and find it suits me.

Insomnia has dogged me since I finished a second bout of chemotherapy just before Christmas. Before that, even when worried or scared, I still slept. It was a refuge from the horrible things that were happening in the real world. Now the treatment has finished, I struggle far more to do something which I think I shouldn’t have to struggle with at all. Surrounded by 2 cats, a dog and a husband who can all fall asleep at the drop of a hat, this feels rather unfair. Mark has been known to start snoring on his way into bed and please let’s not go back to the ‘getting into bed’ debacle we had earlier in the year.

Another interesting quirk I discovered recently is one which we can all compare. When I have to turn round, say in the shower or to pick something up that is behind me, I find I have a definite predilection for turning anti-clockwise. Turning the other way makes me feel funny (or come over all unecessary as people used to say). In the spirit of late night quirkiness, I would invite you to check your own turning circle and report back. Surely I’m not a lone voice crying in the wilderness here? Answers on a postcard, please.

Dragons and Dog Shows

This weekend has been the hottest so far in London so we decide an outdoor programme is required. We decide to stick with our plan to go Dragon Boating on Saturday. I feel we are somewhat extreme as the first time we went it was snowing and someone was taken off the boat with hypothermia and had to go in an ambulance. On Saturday it is boiling hot even before we start. I feel lazy and let other people get the boat out and then we’re in it and away we go. Ciara, our captain, works us very hard and we’re paddling away, doing exercises to improve our twist, working our legs and bottoms and making sure our start positions are right. Out on the water is slightly cooler with a bit of a breeze but every University rowing team also seems to be out there, sweating it out, most of them impossibly slim and tanned. After an hour, I am done. The boat goes into the pontoon and people swap sides and places in the boat. I say I will sit the next session out but Ciara asks if I want to sit in the back of the boat and just have a ride which sounds lovely so I accept. It’s great to sit back and watch people work and the planes taking off and landing at City Airport which is right beside the dock. Raging Dragons are also out on the water so it is decided we will race at the end. We are given a head start which is just as well as they are fast and pretty good but we paddle for our lives and I think we come in together. It’s fun, whatever. Walking away, my legs feel wobbly and I am tired but in a good way. Once we get home, we eat and sit down and an incredible feeling of calm and peace flows over me. I am in bed by 9pm.

Sunday morning dawns glorious again and we go to the South Bucks Pony Club dog show. The dog show is run by Greyhound Gap, a fabulous organisation who re-home greyhounds, lurchers and the like. There are so many dogs like Dog there, we are very happy. They have organised several competitions so we enter him for the Most Appealing Eyes, Handsomest Dog and Best Rescue. At the last moment we enter him in a lure race. They have a lure which is powered around the field for the dogs to chase. Although it is very hot, from a field away, Dog can see it and his attention is all on it. We go over and take him into the field. It is explained that the lure will go round once to excite Dog and then we can let him go and he will go like hell for leather around the field after it. Dog looks excited. The lure goes round once. He is let off the lead and immediately goes into clown routine, ambling around and saying hello to people and taking no interest in the lure whatsoever. It is very funny. In fact, it’s funny watching all the dogs whether they chase or not. They try to cut corners or else show no interest. It is very hot so we forgive Dog’s shortcomings in this department and realise again that this must be why he was dumped. He was bred by travellers for hare coursing, we think, and he shows not much interest for chasing rabbits although he has caught a couple. Now squirrels…that’s another matter.
After the shame of the lure, we go to the arena. Well, I say arena but it’s an area of the field roped off with a plastic gazebo to help give the dogs some shade. Dog enters his first class – Most Appealing Eyes – and gives the judge his best winsome look. We are delighted when he comes away with First place. Alas, it’s all downhill from there. Having won a first, Dog can’t be bothered to play the game and be the Handsomest Dog or Best Rescue although he scrapes Sixth place in the latter.

We wander off to find some food while the last classes are being judged and arrive back in time to see the penultimate class – Dog that looks most like its owner. There are only 2 entrants and we wish we had entered. Never have 2 people looked less like their dog but we know we would have been placed and then it would have been official. We have to be back for Best in Show which is very amusing. Dog has decided his best position is horizontal and he flops on the grass and can’t be bothered to show his best side. In 30 degrees, I don’t really blame him. He is not placed and so we wander off, proud of his small achievement and watch the show jumping for a while. Small children are racing round on ponies with such confidence and self assurance it takes my breath away. After a while we decide to leave and head home while there is still some afternoon to be snoozed away.

The weekend has been brilliant. I am tired but in a good way and hope for another good night’s sleep. I left my compression sleeve off today in a gesture of defiance (breast care nurse is still ignoring my request to see the lymphoedema nurse) and the heat has made my hand and arm swell so an evening of sitting quietly on the sofa watching a film is in order. This is probably the most active weekend I have had since my diagnosis. Maybe I am on the road to recovery after all.


Pressing issues and unmatched arms

Today I’ve done some ironing in the first time for nearly 18 months. It’s not that my clothes have been crinkled and shabby all this time (and I do wear a lot of cotton and linen just so you know I’m not ironing-obsessed) but I’ve not been up to doing it. It’s amazing how exhausted cancer treatment and fibromyalgia together can make you feel. So, I hear you cry – how did you manage? I managed thanks to 2 lovely friends who took all our ironing and delivered it back, fresh and beautifully folded. They tell me they like ironing which I find hard to get my head round. Apart from this, they also took me to hospital on several occasions as well as helping with moral and emotional support. And now, they are doing something even more amazing and I encourage you to follow them. Alan and his wife Lesley are doing the Adventurist’s Mongol Rally and through this, supporting Cool Earth and Street Invest. Alan starts his journey today with his friend Matt and they will complete the trip in 4 to 6 weeks. Lesley is flying out to join them in Russia in a couple of weeks so I hope they find they have the same sense of humour and enjoy the same taste in music as they only met Matt a few months ago. If you want to follow their blog, you can find them here. So it’s essential I am able to do my own ironing again as my ironing team hit the road in search of more good deeds. Maybe they will get to do some extreme ironing as they go.

As for me, I am pushing myself to do more activity. Tomorrow I will be back Dragon Boat racing for the first time since March. When I say racing, I really mean just paddling as we don’t normally have other boats to compare ourselves with. It’s a bit like Hawaii Five-O with much slower, older people. Again, it’s an amazingly generous act as people are donating their time in order to get us out on the water. In case I haven’t mentioned it before, Wave Walkers is a group of people affected by cancer and team members from Raging Dragons come along every other week to help us find newer and better levels of fitness and have fun. It’s not something I would ever have considered doing (have I said this before?) but the post-cancer space between active treatment and – well, whatever comes after that – seems an ideal time to indulge in some new activities. It also feels like a good way to try and get some energy and just put cancer to good use for a change. So tomorrow, bright and early, I’ll be up and off to Docklands with Mark, wondering if it’s the right thing to do as usual and knowing I’ll feel better as soon as I’m on the water. The only downside to this is that because of the lymphoedema, I have one pale arm and one brown arm. I am unsure how to rectify this. I will definitely need to wear the loathed compression sleeve to something as energetic as paddling but look forward to the day when my breast care nurse gets her finger out and books me an appointment with the lymphoedema nurse so I can learn how to manage the condition and not let it get any worse. In the meantime I will just have to look half pale and interesting. It’s a look.

Tea and cakes with African rhythm

I’ve had a slightly surreal experience. On Saturday, the weather dawns fine and bright and we know it will be a lovely hot summer’s day. We decide to go to the local Farmer’s Market to see what they have and also marvel at some of the ludicrous prices. However, we come away with some beautiful organic rye bread, some smoked mozzarella and some salt beef so honour is satisfied. Our favourite cafe is closed. I have spent many a happy hour in there, resting between shopping when I couldn’t manage the trip all in one. The people who ran it were lovely and, on one occasion when I was hunting for change, told me not to worry but to pay next time I was in the area. It was also a good place for elderly people to congregate and be rude to each other in that lovely way older people do. I really enjoyed sitting at the next table listening to them reminisce and slag each other off in affectionate banter. We go to another cafe and have coffee there. We ask about the cafe opposite and the people tell us they have not gone on holiday (as we had hoped) but have gone. For good! they say, with emphasis and a small smile. Suddenly their customer base has increased dramatically but although they are polite and attentive, their coffee is not as good as at the other cafe.

After lunch, we go to the old Quaker meeting house in Isleworth. It is the venue for a garden party in aid of the Maggie Centre. I am sporting my new panama hat, bought a while ago in a charity shop in anticipation of some summer sun and to protect my new growth of hair. I wonder if I am dressed up enough for such an event. We had never driven down the little lane before so had never seen it. Immediately it is like stepping back in time and into another world. The meeting house owns several acres and, I suspect, held several more but have sold them off. What remains is a beautiful garden with a weeping cherry tree and several apple trees in a small orchard. There is clearly a children’s nursey there as the orchard is a riot of outdoor toys and a small wooden house. To one side of the building is a huge cemetary. 501 bodies were removed from a Quaker burial site in Long Acre at the end of the 19th century. Their lease had expired in the 18th century but they were finally told to take the bodies and re-bury them, which they did. There is a plaque on the wall to show where the bodies are buried and to emphasise they did not want to move them but did so under duress.

We sit and have tea and cake in the orchard, basking in the sunlight and listening to an African Seventh Day Adventist meeting which is being held in a large summerhouse in the garden. Periodically they burst into song and give us renditions of – well, we’re not quite sure what but the singing is marvellous and totally incongruent with our surroundings. We are the only people at the event apart from the people organising it but we restrain ourselves from eating the entire supply of cakes. As we leave this tranquil suburban oasis, I am pleased to see a small stream of people making their way to the house so I am doubly grateful I didn’t eat everything in sight.


Allergy redness

It’s been a busy week. Working in Southampton, seeing Fran and Rouzbeh off to live in Bangkok, an NIHR training day and then, on Friday, a minor procedure to have my portacath removed. I’ve been here before. This is portacath number 2 which is leaving me, having done sterling service since October 2012. Portacath number 1 lasted from April to October and then gave up and now lives in a plastic pot, sometimes on the mantelpiece, sometimes in the box with all my cancer memorabilia.

The day is a glorious one and I arrive before 9am, empty and thirsty and go to 6 East, the Chemo Suite, where the oncology registrar has told me to go. It is the wrong place. Steve, the receptionist who has made my visits to the chemo suite entertaining, tells me to go to a different ward where they are expecting me and I am admitted and given a bed. My obs are done several times by different nurses who are polite but ask the same questions over and over, including asking if I am allergic to anything. I tell them I am allergic to all dressings except one called Mepilex. I am so tired from not sleeping well for the last couple of nights that my book doesn’t keep my attention so I stretch out and doze, hoping I am not drooling or snoring too much. Around 1.30 the ward sister comes to put a canula in my hand.This can be entertaining in that it is extremely difficult to canulate me but this woman means business and tuts over my veins, slapping my hands and arms repeatedly. She then fetches a bowl of very hot water and plunges my hand into it. It is way too hot for me so I pull my hand out but she pushes it back in, so we endure a little playful push and pull with me saying “Ouch” and the sister talking to another nurse and not listening to me. Eventually the water cools sufficiently for me to put my hand in and leave it there while she rushes off to deal with some emergency. When she comes back, my hand is bright red but even with a torniquet and repeated slapping, the veins in my hand won’t play. She searches my forearm intently, looking for any rogue veins which might not have hidden themselves too well. With choice of just one, she is limited. Looking in the crook of my elbow. she spies a site which was raided by the phlebotomist only the day before and swoops in. I’ve been stuck with a canula so many times now that I can pretty much tell when a needle has hit the right spot. It hurts a lot more if the vein isn’t punctured properly or if the needle passes right through. She plunges the canula into me, repeatedly withdrawing the needle almost to the skin and then wiggling it about again. She pulls the plunger and a little blood makes its way slowly into the line. She looks pleased and I can tell she thinks she has got it. She presses the plunger to push saline into me and I can feel it swelling beneath my skin. “I’m not sure it’s in properly” I say, trying not to teach her her own job. She purses her lips. “You saw blood drawn, didn’t you?” “Yeeeesss” I say, reluctantly. She says no more but proceeds to stick the canula down with almost an entire roll of sticky dressing. Not a single piece of Mepilex and I feel our relationship will deteriorate further if I mention I am allergic to it and it will make my arm red and sore.

Then the porter is there and I am whisked down to the Vascular department by chair. We chat all the way which is nice. Several nurses stop by my cubicle to say hello. Kingsley is a tall, African Caribbean nurse and he tells me he is there to take special care of me. I am looking at something on my tablet and he asks if I am a writer. I tell him I write a bit, thinking of this blog and the other things I write. He tells me he also writes but he specialises in poetry and spiritual writings. I am given a gown and eventually am taken into the operating theatre but not before one of the nurses has put a theatre hat on me. I tell her I did not wear one last time I had this procedure and she looks confused until I tell her I had no hair then.

The surgeon arrives and says a vague hello to me whilst bustling about and then counting out instruments with one of the theatre nurses. Suddenly he is all business and is giving me sharp injections in my chest. I wince. “Yes, it stings, doesn’t it?” he says cheerfully. I ask if I can have some sedation but he says it’s too late and that it won’t take long. “I’ve given you loads” he says in an admonishing tone. Shortly after this, he begins his work. I am unable to see what is happening as a theatre cloth is placed over my shoulder and covers half of my face. I’m not sure I want to twist my head to look while he is fiddling about with my jugular vein. Whilst I cannot feel pain, I do feel a lot of tugging and rough treatment. I feel him wipe blood away frequently and then, he is chatting with a colleague who appears to have just wandered in. They discuss colleagues and generally indulge in gossip while I lie there. I am hoping he is not too distracted as I don’t wish to spend my last moments listening to the surgical equivalent of boy racers. One of the nurses eventually shoos the other doctor away. “You’ll just feel a bit of pressure here” he says, pressing heavily on my neck. Afterwards I discover a large bruise there. He begins to sew me up and I ask him to make sure he does a good job to which he just grunts. The contact between us is minimal and I feel I am a bit of inconsequential meat to him. The nurses are different and want to interact. After he’s finished and the last of the sheeting has been taken away, and the huge adhesive mat he has stuck to me has been painfully peeled off, he asks for a container for my portacath which he presents me with. I am slid onto a bed, covered with a sheet and wheeled off into the recovery room.

The recovery room is a much better place to be. People (ie nurses) hang out with you, get you coffee, sandwiches and generally chat. They tell you what they are doing apart from nursing and know where the biscuits are kept. One helps me remove all the adhesive tape the nurse on the ward covered the canula with. The inside of my elbow is bright red where it has complained about the adhesive. ‘The canula wasn’t even in properly’ says the nurse as I remark they didn’t use it. They keep me for another 2 hours and then the magic hour of 5pm dawns and I am released into Mark’s care and we go home. The anaesthetic wears off and my wound hurts. A lot. It feels as though someone has taken a sharp implement and plunged it into my chest. Oh, wait… I take every painkiller I have in the house apart from morphine but it wakes me every time I move and hurts when I lie down. I wonder about the surgeon and whether he is having a good night’s sleep. The pain is so different from my previous experiences and I wonder how having something foreign removed could hurt as much as having something inserted. I also wonder why everyone asked me about allergies and then proceeded to use something I am sensitive to. As I write (Monday) the redness has gone down on my arm but the nurse taking blood from me today gasps as she sees the damage. My chest is a battlefield of scars, burns and allergy redness. Now there’s a name for the paint manufacturers to conjure with.

It’s not my grief

I have been mulling a blog post over for the last couple of days, talking about my life, my weekend, my kids. Until today. I read a friend’s blog post which has rocked me to my core. Her son who has autism died today in the mental health unit he was staying in. He was a young man, just 18 and getting his life sorted. I never met him but I know and like his mum very much and I feel physical shock so I can only imagine how the family must feel. It’s not my grief but I feel it like a punch to the solar plexus. God only knows how they’ll get through the next few days/weeks/months but all I can do is send them love and feel slightly guilty that my family is still intact.