Tag Archives: lymphodoema

Woo hoo! Bank Holiday!

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I am absurdly excited by the forthcoming Bank Holiday. Last year, I can’t remember what we did. I do remember being in the supermarket with Mark and wondering whether Easter had happened or not. My thought processes were so scrambled from chemo and the amount of information being thrown at us that I was unable to think straight. Today, although my thought processes are still muddy, I am so much clearer and better that I am able to look forward with keen anticipation. Yes, I know I’m not working but the thought of 3 days without appointments or any other kind of distraction is very, very appealing.

Today had a good start. Thanks to the idea of one of my blog followers, I contacted my GP to ask if I could be prescribed an Acti-Glide sleeve to help me put my compression sleeve on. A day after I sent her the email, I receive a phone call from the surgery informing me there is a prescription for me. A day later and I am the proud owner of a bright blue Acti-Glide sleeve. It is made out of a kind of woven plastic and has elastic and a plastic tie. The instructions seem very simple so I try it out and hey presto! My sleeve is on magically without the sweating and carry on I have enjoyed before. I slip on my tattoo and I am ready to go (having showered and dressed first – I am not going out in just my sleeve, not even if you pay me).

Today we go to Cambridge so I can work with some researchers looking at an intervention to help people share bad news with friends, family, colleagues etc. We drive past fields full of gloriously yellow rape. The skies are dark and the contrast is stunning. We arrive at Hughes Hall and Mark and Dog decide to go for a walk while I meet the researchers and other patients. They provide lunch which is plentiful but slightly bizarre. There are sandwiches with the crusts cut off, wraps and, on just one platter, half a bagel. It looks as though lunch has been composed of left-overs but it tastes fine and it is kind of them to feed us. There are 6 of us excluding researchers, all having experience of cancer first-hand. Ann, a lady sitting opposite me, has had bowel cancer and, just before her fifth anniversary, found out she has developed bladder cancer. Her friends and family had arranged a party to celebrate her 5 years clear and she had to announce her new diagnosis. I can only guess what this may feel like and she is clearly distressed at recalling the very recent events. We discuss what sort of information might be useful but it’s difficult to imagine what anyone fresh from diagnosis may be able to take in. It’s an interesting meeting, though, although periodically I wonder about Mark and Dog as the rain lashes down outside followed by bright sunshine.

At the end of the afternoon, we leave the meeting. Ann and I swap email addresses and I find Mark and Dog in the car, waiting for me. We drive home via the supermarket where, full of Bank Holiday cheer, I run around throwing lovely things into the trolley. I plan to buy a big tub of sweets for the Chemo Suite staff as it is my final dose of Herceptin tomorrow but, amid legs of lamb, pots of fresh herbs and cream, I somehow manage to forget this completely, only remembering as we drive away.

It is one year since I began receiving Herceptin. I started the infusions in a confused and chaotic state and cannot remember exactly when the first dose was given. The only thing I remember is being given the first dose carefully and slowly in case I had an allergic reaction to it. I was bald and was being given my first dose of Docetaxel, the wonder drug made from Yew trees. Light sensitive, it is given under a protective bag to keep it dark.

This weekend will be a celebration. On Saturday we are having lunch with friends and I plan to make arrangements to fly in our friends’ light aircraft, another of my firsts. The fact that it coincides with a Bank Holiday just makes it extra special. I have been so lucky with the support and love of friends and my immediate family. I am not sure I could get through it without them.

Down the rabbit hole

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Like Alice, Mark has fallen down a rabbit hole. Unlike Alice, he has only sprained his foot although I suspect the absence of excitement thereafter is down to the lack of hallucinogenic drugs resulting in a mundane injury. He bravely hobbles about, wincing as he goes. This means today I am on Dog duty which requires a trip to the park and throwing of sticks. I am not much good at throwing sticks, partly due to being a girl about such things and partly due to the lymphodoema. Yes, folks, the sleeve is back! I collected my new grip-top sleeve which makes me think of the Monty Python jingle of Thoroughgood’s Garterettes. If you don’t know it, look it up. After one day of wearing it, my arm is sore and aching. It feels better without the sleeve but I suspect the lymph fluid is building up so it has to be repelled, like the parting of the waves. At least it isn’t rolling down, causing fear of a blood clot.

The ‘Getting to see the Lymphodoema Nurse’ saga continues. I remind my breast care nurse who emails me back to say the new lymphodoema nurse is now away for 2 weeks but she will ask about an appointment on her return. I know she is very busy and that I have to continue to push but I still feel a glowing resentment. This is a very real effect of the cuts in the NHS. On another front, I am being referred left, right and centre by my new best friend, the consultant at the Royal London Hospital for Integrated Medicine. True to his word, he has written to my GP with suggestions of new drugs, a mega dose of vitamin D and has made me appointments with the Physiotherapist and at the Pain Clinic. I feel taken care of and that I am getting somewhere.

We recently bought a new mattress in an effort to make my sleep better and less painful so the old mattress has been languishing in the hall where Bunty has taken to sharpening her claws on it. We were going to take it to the tip but I thought last night I would just put it on Freecycle to see if anyone wanted it. A lady emails me this morning to ask, very politely, if she and her boyfriend might have it. We exchange emails and agree her boyfriend will collect it around midday. A very nice Polish man duly arrives and seems very happy with the mattress, particularly because it says ‘Orthopaedic’ on it. He is very smiley but doesn’t seem to have a car to take the mattress away with. “No, I carry” he says and he does, putting it on his head and walking off down the road with it. I feel pleased all over. It has saved us a trip to the tip to contribute to landfill and he has a nice mattress to share with his girlfriend. Result.

The Cider Mill Man

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Our break (or Royal Progress, for those following this blog) is going well, apart from torrential rain and high winds yesterday. We slop around various pretty towns, pretending it isn’t really raining hard but when Dog refuses to get out of the car, we know it is pretty bad weather. And it is really cold, unseasonably so for May. We decide to call it a day mid-way through the afternoon with just one final stop for the day. Dunkerton’s Cider Mill http://dunkertons.co.uk/.

As we get out of the car, another couple with 2 dogs are trying to encourage them out of their car. They smil wanly (the couple, not the dogs) and vainly try to look as though they are firmly in control. Their dogs need to wee and so does Dog but he can’t go when other dogs are watching unless their heads are actually underneath him when he has no problem in piddling on their heads. I decide to leave the dog-wrangling to the experts and, throwing myself into the wind, drip off towards the Cider Mill. Once inside, we are greeted by an elderly couple who shout “There you are!” as though they have been waiting for us. They focus properly and then the man declares “It’s not you!” which is quite hard to answer. Mark says “It is me but not the me you’re expecting” and we leave it at that. I fall twice into the shallow trough running the length of the floor. The first time I do it, the Cider Mill Man says “Mind the trough” as though I haven’t just fallen in it.

The range of ciders and perry they have is quite outstanding for such a small enterprise and everything appears to be organic which is even better. We have already sampled one of the ciders before so choose a variety of other bottles, causing chaos by choosing one lot and then going back and doubling up our order. The Cider Mill Man jots it all down on a pad and adds it up manually, despite our disorganisation. We all agree it is very, very cold and compare how cold our hands are.

The worrying part to this is how it may affect their business and agriculture in general. The apple blossom should be out already but the weather has been so bad this spring, Cider Mill Man estimates they are a month behind. With the warm weather earlier in the week, they are now worried the blossom will emerge and be battered by the strong winds before it has time to be pollinated. And the bees are another cause for concern. Even in the last week when there have been hotter days, CMM says he has seen very few bees flying. They have 30 acres of trees and I seem to remember a similar number of hives but he worries that their bee population, despite constant feeding over the winter, has been decimated. And if the weather doesn’t improve, the trees don’t blossom at the right time and the bees don’t do their jobs, there are serious implications for their business. They can only turn what they grow into cider. It’s a real worry and as we leave a cheerful-but-worried CMM, I vow never to buy F1 flowers for the garden again. Radio 4 told me they have been so refined in their production that some of them now have no pollen at all. We could let the garden go wild and allow the bees free rein but I fear it won’t help CMM.

My pedometer has been behaving itself since I discovered it was set to a 24-hour clock and adjusted the time *cough*

Energy levels continue to be a problem as is pain in my back, knees, legs, shoulders, arms – well, everywhere. I am doing well and walking every day but I am feeling more and more exhausted. It is frustrating because I want to be able to do what I did before the demon cancer came into my life and it’s just not happening. I am doing well but just not well enough for me. Next week’s diary is looking like a minefield of appointments and meetings and already I am worrying about it. What did I say about taking on less? I have to clear my diary around Race For Life in June or I will never make 10k and I really, really want to. My scar is still not healed and that’s from 3rd August last year. This is probably having a draining effect on my energy, too. I have tried manuka honey dressings most recently which haven’t worked their magic. I did wonder, when wearing one, whether bees would suddenly find me more attractive and swarm but this hasn’t happened. Someone else suggested wasps might find me really unattractive which is an altogether more horrid prospect but again, thankfully, this hasn’t happened. I hate how I have to push to get someone interested in my on-going health. I emailed my breast care nurse asking to see the new lymphodoema specialist who has recently joined the team and sending her an interesting article about weight training preventing lymphodoema. She does not appear to have read the article when she replies and, yet again, I am told she will get back to me about seeing the new nurse as she is ‘overhwelmed’. It’s not her fault. Funds are being stripped out everywhere and I imagine there are loads of us with fat arms waiting to descend on her. My new sleeve has not arrived yet, either, so I have been wandering around fat-handed, occasionally holding my arm up in the air to the alarm of passers-by who worry I am trying to attract their attention. Maybe if I waved it at the new lymphodoema nurse she’d give me an appointment.

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Where we are staying….Image

 

Farewell wifi Alice

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As I so often say, it’s been a funny old week. No one week seems to be like another and it’s quite disconcerting to have so much choice and potential freedom and yet to spend so much time doing stuff all squashed together. I had a dream last night where someone was explaining to me that I had something wrong with me which explained a lot about how I functioned. It was immediately one of those Eureka! moments where everything suddenly makes sense and I realise why I am how I am and that it’s actually OK to be like that. Cue reality and the dawn and none of it makes sense any more. Sigh.

We’ve been away for the weekend, spending it with friends just outside Chester. They are a lovely couple, frighteningly intelligent and funny and one of them has only one leg but I won’t tell you which. That is, I won’t tell you which one has only one leg, not which leg the individual is clinging onto. They also have unsecured wifi called Alice, which I really like. It is both generous and touching in its naivety.

The drive up was horrible. The usual ‘congestion ahead’ notices meaning cars slowed down on the M6, thus creating congestion. We received a heroes’ welcome and settled in for an evening of good food and conversation. The following morning it was sunny! An absolutely perfect day weather-wise was matched by a lovely day travelling around bits of Wales. At an aqueduct, we marvelled at the feat of engineering and daring thought that had created it and then watched a party of inebriated young people steer a narrowboat into the side of the canal and come to a sudden stop, causing lots of the young people to fall over. This I enjoyed very much although wished they weren’t quite so inebriated or rowdy. They then proceeded to tether the boat, firstly to the side of the canal opposite a junction, causing a canal official to tell them “You can’t park here” and then to the other side where they all jumped ship and picnicked at the side of the canal. They must have travelled all of 100 yards in their boat. But the weather was spectacular and I caught the sun. Mental note to buy high factor sun cream now we have had one day of hot sun this spring.

We also went to Plas Newydd, a beautiful house owned by 2 female friends in the early to mid nineteenth century. There was much speculation about the sexual orientation of the two friends who seemed to want to live the idyllic Romantic life, away from society. They lived on very little but had a considerable number of very wealthy and influential friends who visited them, bringing gifts, money and pieces of carved oak from around the world. They patched it together and had it installed around the house in an amazing patchwork of styles. They also salvaged stained glass and had it soldered together in leaded windows, creating an amazing rainbow of colour. Having run away together from Ireland, causing a huge stir in the process, they were horrified when a female friend, having lost her ‘special friend’ to a convent, asked if she could come and live with them. They favoured masculine clothing and did not like sitting for portraits so the only ones available are those done somewhat furtively. They seemed to have been huge celebrities in their time although it seemed their lifestyle was the thing they were most celebrated for.

This week is going to be another busy one. Despite my intention to do things slowly, have time to relax and rest, I seem incapable of clearing my diary for a week. My mind is racing way ahead of my body most of the time so I am hoping my body will catch up. The bloody lymphodoema compression sleeve is mis-behaving in that it keeps rolling down. It’s at this point I remember the nurse saying “It mustn’t roll down or you might get a blood clot” so will be going back to the hospital to show them the recalcitrant sleeve and see whether they can provide a better behaved one. Fran suggests they make them with the slightly sticky rubbery stuff you get on the inside of hold-up stockings. I think this is a good idea so may enquire if they have such a thing. The tattoo sleeves have proved a massive hit and once I have a compliant sleeve, I will post photos.

Where is Spiderman when you need him?

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Oh, back to the compression sleeve. I decided to take Sundays off on the grounds that I am not perfect and the sleeve is very disturbing to wear. It takes me ages to put it on and I am unable to settle the band at the top properly without help. Today is a classic example, even though I have only had the wretched thing a week. Mark has gone out early to a meeting so I have to put the sleeve on myself. I need at least 6 hands. I struggle and sweat over it. It takes me about 10 minutes to get it fully up my arm by which time I am hot and very, very cross. Then it does something which is already so familiar and depressing. The top begins to roll down. This is something I have been told categorically MUST NOT HAPPEN or I am at risk of developing a blood clot. I need braces for my compression sleeve. I feel I need to sellotape around the top to keep it flat except, of course, that would be more pressure and may lead to – and I sense you’re ahead of me here – a bloody clot.

No-one tells you the end of the story when you develop cancer. Probably because the stories end so differently and, don’t get me wrong, I’m very happy my story isn’t over yet but I didn’t understand any of the possible stages after the first wave of terror had subsided. I thought six months of treatment would sort me out. I’d lose and then regain my hair, put on a bit of weight, have surgery and radiotherapy and that would be it. But my body is left very damaged from the treatment and I hadn’t expected that. Surgery, I knew, because I’m not a bloody idiot, would leave me looking different and that was surprisingly OK. Surgery itself was vile and I still have nightmares about the drain that got stuck and took 2 nurses and a lot of morphine to pull it out. The change in my body shape was OK, too. I’m not really a vain woman so it didn’t bother me too much. I didn’t understand how the treatment would delay healing so much and how damaging and invasive radiotherapy would be. I guess you could say I had a pretty bad time last year and, don’t get me wrong, this year is going to be way better but it’s also not going to be the same as I expected. I suppose that’s true for everyone, though. Life isn’t always what you expect and has ways of tripping you up and surprising you for the better or worse, in equal measure.

So I sit here with my compression sleeve doing its own thing and I wonder if there is a kitchen implement I could use to settle the top. A spatula? Tongs? I could stop a passer by and ask. Or I could develop another 4 arms and do it myself. Sigh. Where IS Spiderman when you need him?

Here comes the sun

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I am becoming new and improved every day. Every day, in every way I am getting better and better. Or something. Today was the acquisition of the much awaited compression sleeve and gauntlet. Mine is a snazzy all-in-one, caramel in colour, naturally, and very tight. It runs the entire length of my arm, from just beneath my arm pit stopping around the knuckles on my left hand. Hand-washing is very difficult. If I ‘get on with’ this one, I can have another one. I can wash it gently but mustn’t leave it to dry on a radiator. After it was fitted, I whipped my tattoo sleeve out of i’s bag and began to put it on. The man who was helping me – I don’t know his exact title – was surprised. “I’ve never seen one of those before” he said. I explained I didn’t want to be controlled by my sleeve but meant to have some fun with it as I have to wear it. He nodded approvingly.

This afternoon was the formation of the new singing group at Maggie’s. It’s only for 4 weeks but I thought it would be fun. An amazing amount of people I had never seen before came and we sat in an awkward L-shaped room while a very nice man put us through our paces. We did breathing exercises, panting. yawning, tapping and clapping. Eventually we separated ourselves into groups – soprano, alto, tenor and men. Our choir master has decided we should sing ‘Here Comes the Sun’ which is fine by me. The problem is, some ladies in the group can’t understand that you should only sing your own part, not the part of every group. It leads to endless confusion when, say, the tenors are singing their part and women from the soprano and alto sections are singing along. I clearly need to be more tolerant and possibly buy some earplugs.

Waiting in the car park for Mark to arrive, a woman I have never met before accosts me. ‘Wasn’t it fun?’ she asks. We discuss what we liked about the afternoon. ‘As soon I saw you come in, I thought “she’ll be a right laugh”‘ she tells me. ‘You came in with your tattoo, chatting with people and I thought you looked amazing’. How fascinating to see onesself through the eyes of others. We discuss our various cancers. Her tumour was 11mm and she had had it removed. She is due to start chemotherapy on Friday. I tell her I had chemotherapy before surgery. ‘Was that to shrink it?’ she asks. I tell her yes. ‘Did it work?’. I tell her it shrunk to 8cm. She looks aghast. ‘8cm? Mine was only 11mm!’ I remind her it’s not competetive cancer. Cancer is cancer is cancer. She tells me her chemotherapy is made from the bark of a tree. With horrible familiarity I know exactly which drug she will be having and, skipping the horrible side-effects, I tell her it will stop her cancer in its tracks. Mark arrives and we part.

Coming home I get to remove my external accoutrements. My prosthesis, my new compression sleeve. The relief of discarding the improvements is immense. The joy of sitting in pyjamas mis-shapen and puffy-armed is huge. I don’t yearn to go to restaurants, clubs, gigs, the cinema or have dinner with friends. I long for the sofa at the end of the day, pyjamas and sheepskin slippers.

NED’s diary

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I think I am in recovery. I have finished most of my active treatment for cancer (Inflammatory breast cancer, for those of you who haven’t read before) and I’m just receiving an infusion of Herceptin every 3 weeks. So same old chemotherapy suite, slightly different drug cocktail. Before treatment even began, I was skimming through breast cancer forums looking for reassurance/information/salvation and I saw people referring to vodka, gin, whisky etc. In my innocence, I wondered whether the treatment had to be accompanied by alcohol in order for it to work properly. In my defence, your honour, they were very confusing days.

People don’t tend to say ‘you no longer have cancer’ any more, in my experience. Whether it’s because of the rise in litigation or simply because they are being honest and realistic, I don’t know, but I had to mentally arm wrestle my breast care nurse into admitting there was no evidence of disease. NED. It’s about as good as it gets, I believe.

It’s at this point we are encouraged to start making something of a normal life for ourselves again. That’s a strange thought in itself as life will never be the same again, as it isn’t after any of the millions of miniscule changes which happen in our ordinary lives, but in this case, the change feels pretty mega. For some of the time, I feel the same as before but then there is a shift, a timeslip, a crack in my emotional pavement and it’s all different. As you will appreciate, it’s hard to explain.

Recovery is all about having fun, enjoying ourselves and re-connecting where possible. It’s also about rest, rest and more rest. It’s a bit hard to know how to balance it. Exhaustion is a daily word. I am fed up with the word ‘tired’. It doesn’t convey the overwhelming feeling that pins me to the sofa sometimes. I am fed up with the word ‘pain’, too. I don’t know why I have lots of pain in different places and I don’t know what else to call it. I don’t know why my feet hurt so much, and my knees, when I’ve just got out of bed. I don’t know why my hands ache, or my back, or my head. It’s all related to the big C, I guess. Or something else. Who knows? It’s just a pain in every sense.

So, what does a recovery diary look like? I imagined well defined hedges of rest interspersed with flowery beds of activity and the occasional fallow plot for really deep relaxation. No. It’s packed. I feel like I am fully employed with recovery. You might imagine hospital appointments would be few and far between now. My diary is crammed with pieces of paper relating to appointments. It looks like I have a hectic work life. There are appointments for prosthesis fitting, sleeve fitting for a bloody lymphodoema, hospital appointments at different hospitals to check out some of the pain, reflexology appointments, new Cancer Centre induction appointments, psychologist appointments, relaxation appointments….and on and on it goes. In some ways, it’s nice not to be left alone to sit and wonder and I know I’m more in control of the appointments than I let on but phew! It takes my breath away sometimes to think of how much work there is in getting…different, back on track, re-connected. There are also appointments for cake, dragon boat racing, singing and for re-connecting with the world of work.

When I finished my last bout of chemotherapy in December, I thought I would be ready to go back to some kind of work by the end of March. How wrong I was. A couple of weeks ago I was feeling bad about not feeling up to it and talked to my cancer nurse specialist at Maggie’s. She looked incredulous (in a nice way). “It’s way, way too early to be thinking about that” she said which was quite reassuring. I had it in my head that the treatment phase (which lasted for 9 solid months, not counting the Herceptin) was the toughest bit and that after that I would be up and at ’em shortly after. I didn’t expect the recovery phase to be equally tough, albeit in a different way, and equally long. You live, thankfully, and learn.

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