For the carers

 Caring for each other

I’ve taken a big step this month and I’ve got help from carers, especially to let Andrew get out without worrying. I’ve found it hard. It’s an acceptance of my situation, a dependence on others, accepting strangers in to your home and that’s just the start. There’s an emotional toll I hadn’t anticipated; a rollercoaster of trust and testing patience for me at least. 

I’ve decided to have direct payments but chosen to do it through an agency so I’m not acting as an employer. I didn’t quite anticipate the scale of the task if I’m honest, I was drawn to having control over what support I want. 

But these times of shortage of carers that frankly is an illusion. I started out hopeful but soon learned the complexity of my needs were a stumbling point, they really want a daily/weekly commitment that fits with a business model.That’s at odds with a person-centred model and reflects that profits drive    decisions in so many of the agencies. 

It took several dry runs to recruit an agency at last. I thought I had one and they failed to supply a carer three weeks in a row, telling me the afternoon before. Frankly I was angry and totally lost trust. I won’t name and names and I do believe these are exceptional times but the lack of honesty was what made me cancel the contract ( which was all loaded against the client, requiring for example one month to cancel a visit or you had to pay!). 

But fortune favours the persistent and following a request through care sourcer, a website shared with me by the Occupational Therapist, resulted in a visit by the manager of an agency which puts quality care at its centre. All the agencies say that but here I’ve seen this in action. They speak a language of compassion and they really show it too. Many of them are originally from Africa or other parts of Europe and I love their warmth and care and that they bring diversity to my life which has shrunk in recent times. I found it stressful at first, having to explain so much and seek the right balance for us all. But it gets easier and they bring cheer and kindness too. What’s not to like. 

I remain on chemotherapy but haunted by bladder infections which take me up and down a ladder of well-being ( more down really). I’m beginning to wonder if I can keep this going. In the main the team in the chemotherapy ward are great, quietly efficient and thoughtful but we met the exception to that last week.

And it’s an issue so many disabled people will recognise when they interact with healthcare, the people who think they know better than you and your carer do about how you mobilise and function. A sort of nursesplaining( I’m very experienced a phrase that was used when they clumsily tried to help me into a chair). They made me have a minor panic, standing right in front of me, rather than asking what I needed. They then bossed around Andrew like he didn’t know what to do either. We were both angry and it damaged trust ( that word again)and kindness was sorely missing. She apologised in a fashion and I suggested we start again. I think after that she did her best but really it wasn’t good enough on a ward when there is so much vulnerability. I found myself feeling sorry for her, sensing she knew she was falling short. 

But the reassuring thing was that she was an exception and that reflects well on those who do it well most of the time. It’s a busy and relentlessly emotional place to work ( and to be in as a patient), kindness and care need to be the glue to hold it all together including for the team. 

So this blog is to give thanks for the carers whoever they are, especially the families steadily alongside us, unsung and without reward. Thank you, all of you. 

Summer days, drifting away

 

Summer days drifting away 

When I did grief counselling it was striking that the bereaved often found summer worse than winter, when adapting to losing their loved one. Winter allows us to coorie in at home, the rest of the world closed off from our experience. But summer rubs your nose in the pain. Postcards from another world, of families, intact and making memories. The grieving sit alone, an acute longing separating them from how summer used to be. 

I recognise that feeling as my summer moves slowly. Bereft of holidays or breaks from the relentless slog of chemotherapy. On top of my chronic pain and disability, life feels like pretty hard work with little return. 

And yet I know it could be so much worse, as my treatment plan left out taxotere from the typical regime. With my existing conditions it was thought to risk tipping me over. I worried it would knock me down and I literally wouldn’t be able to get up again. So I’m not as sick as I might have been and I have my hair so far. But a recent urine infection showed my vulnerability and I struggled to get through. A relentless headache led to having a head CT to rule out brain metastases. Thankfully it was clear but it does hint at how things have been.

And over this time I see others making the most of their summer, having holidays seeing other places and I envy them their break from the routines of life  and seeing new horizons. I just feel the need to have something to look forward to. But with covid at the highest levels yet going amongst others is risky. I wear my mask against a tide of indifference and denial. 

My friends and family are literally keeping me putting one foot in front of the other. Also climate change temperatures ( even in  Scotland!) have taught me the danger of being too hot. I slept most of the days when the temperatures were over 30 here with no hint of a wind. I’m suited to cooler temperatures I’ve decided. But I watch the evidence of climate change with cold dread for future generations.  Being a political geek the recent democracy farce that is British politics would have acted as high entertainment. But with so much angst about cost of living rises and climate change it failed to entertain me but instead forces people like me to realise just how politics is separated from reality or compassion. Not much to laugh about there! 

So to all you who are struggling this summer, I hear you. It’s enough to get through for now and here are my very personal suggestions. Be kind to yourself and to others. That can be enough to change someone’s day and it will definitely change yours. Oh and eat ice lollies is my other tip, aside from midget gems they are my best guilty pleasure. Yes my life is a riot! 

Letting the light in.

 My heart, which is so full to overflowing, has often been solaced and refreshed by music when sick and weary.

- Martin Luther -

            Celebrating my daughters Race for Life-a jewel to treasure this week! 

I read this quote this week and it made me pause. There is no doubt that music has been an important part of my life. I’m a singer songwriter fan and also very much enjoy those whose voices are the instrument too, not necessarily together as that can be a hard ask! I notice, however, when I’m most stressed and anxious because of life and it’s travails I can’t listen in the same way. Somehow I takes up too much room in my head. Perhaps my brain is too overwhelmed by making sense of things or just getting through each day. 

At other times it’s been reading, my usual solace, that has left me. I have found I can’t concentrate or as soon as I dip my eyes I’m asleep but not now thankfully. I’m enjoying every form of reading but I need to be selective. I don’t do sad just now, nor dark, just escapism or thoughtful well written books are as much as I seek. And I do love an audible book, a story in my head to take me away to someone else’s life and place is a gift, especially on the harder days of chemotherapy. 

Mostly when I’m on the ward, I have the AirPods ( I treated myself to them at the start of treatment- wise decision) in place, some banal novel in my ear and my eyes closed. Otherwise I’m too open to others pain and it’s hard to witness. It’s the emotional pain really and that maybe my projection but mostly I sense that I feel it in them too. And it’s hard not to hear the stories. See the veins give in and fight back against the cannulation. The defeat as their story doesn’t unfold as planned, a scan showing treatment not working, a blood test requiring attention. A slow giving in to the cancer ruling your life and the gradual acceptance of it. Your own life reflected back in theirs, maybe differently but at its core we share that connection and it feels visceral. 

I wonder for the nurses who do this work day in, day out. Their kindness soothes us, their smiles and quiet competence a support to a world that feels unsafe in so many other ways. They are getting used to me now, pitching up in the wheelchair. We know where the real accessible toilet is after a bad start and I know the rhythm of the day and what to expect. The summer is moving past slowly and I’ve had to give it to just making it about getting though the treatment. Tentative plans for trips are now cancelled until later. Not only am I tired and vulnerable but covid again is everywhere. 

For many people I know they are infected with it for the first time and really don’t feel great. Thankfully they also so far have recovered over time. Honestly it feels surreal, we talk of life being back to normal but almost everyone I know locally has covid. It hasn’t gone away but masks are rare and any sense of shared protection has gone. It feels a lonely place to be. I do understand wanting life to go back to normal but it’s like a mass denial, supported by governments who have given up trying to have any semblance of control. Thankfully vaccines have helped and we aren’t back in those early days but for some of us the fear remains raw. And omnipresent. 

So I have listened to some music recently but it’s been Leonard Cohen! Does that reflect my state of mind? I some ways it does but that means a reflective place and there is no one like him for getting to the heart of matters. The Anthem is one I’ve often quoted and not only the words but the anthemic nature of the song brings a special  comfort in these difficult times in my world and the wider world too. ‘There is a crack in everything, it’s how the light gets in’. So here I am getting through, trying to let the light in and enjoying the things to celebrate, however small they are. 

Find the jewels

 

Find the jewels 

Find the jewels she said

Sometimes they are buried 

I thought. And I’ve little energy

for hunting. 

At times I find myself 

storing hurts instead.

A missed opportunity, 

a song unheard.

Too many moments lost

in what’s not happened 

trying not to long for

what has passed. 

But the jewels are there 

often in full view.

A new bird finding the feeder. 

The dogs joy at our homecoming.

And for this afternoon

The gentle snore of the cat

permeating the quiet afternoon 

light, creating a soothing rhythm.

It’s a cat and dogs life….

 

A week off chemotherapy helped me have space to fit in a short trip to family in the south Highlands of Scotland. As soon as you arrive the freshness of the air starts to soothe. It’s so valuable to switch off from the tyranny of blood tests, treatment, assessment, endless medication and so on. 

For a few days it was beautiful scenery and beautiful people. The pain was-is-still breaking through but less so. I can feel and see the concern on others when I struggle but I can no longer protect them from my worst times as they are too evident. My drugs get increased again and slowly I’ve improved a little. The steroid injection has started to kick in too. My body is less guarded and I’m relaxing a little more. So I’m sleeping-a lot! 

The other day after a busy morning on a webinar I spoke at, I snuck upstairs to change into a soft denim look jumpsuit ( like a posh onesie tbh). Getting changed is always a challenge so I rewarded myself with a wee lie down. Several hours later I awakened with a jumpsuit on inside out. I’m like the dormouse in Alice in Wonderland!  

But I managed to escape the jubilee celebrations largely so that was a win in my book. I’ve lived my whole life with this Queen as our head of state and like many in the UK I have an admiration for her commitment. But for me that’s about her. I now feel the need for a more effective head of state and I have great concern that whilst we have a hereditary monarchy we will never address the outrageous inequalities that are worsening in our country. The Platimun celebrations sit in stark contrast with the many who can’t afford to feed, clothe and house themselves or their families. When the government announced that we are to return to imperial measures I had to agree with our first ministers quote  ‘those whom the gods seek to destroy they first make utterly ridiculous’. Poverty isn’t inevitable in a rich country such as the UK. I’m so distressed by what I see happening around us. 

But one of the effects of cancer treatment is it by necessity has taken me inwards. I have little energy for external issues, I’m just getting through each day trying to balance pain relief, sleep, having good food and having some social life to keep me on the right side of sanity. It feels a selfish life but it’s all I’ve got for the moment. Our trip north taught me that the hoped for trip to Ireland in August was just not realistic. I’m sadly accepting that but hoping it’s just postponed. 

So life is at a slow careful pace just now. And that has to be enough. I’m embracing our cat and dogs approach to life. There’s much to learn from them. And from the simple joy of our Grandson chasing bubbles. 

When people don’t understand the impact of pain-it hurts.

 

                                                                   The Mood Moose 

Who knew how good a pain killer Naproxen is? Take note but protect your stomach! I’ve been on it since the start of the spinal growth caused me pain. It helped. So much so it was a while, until I started to lose power and mobility I realised I might need more help. Since then my cocktail of drugs has changed and varied but naproxen maintained. When I was told to stop it as I started chemotherapy ( I didn’t know till the day before) I thought ok some tweaks of other things and I might me ok?

I talked to a GP, we made a plan. The steroid holiday got me through the first day and a bit, by Sunday I was whimpering in pain by the evening, during the night and first thing in the morning. Monday morning came I contacted the GP. We topped up pregabalin and I asked re topical gels. Ask oncology- they told me to ask GP-. I asked the pharmacist-they told me to ask oncology. Wednesday I asked oncology, explaining my pain levels even when further increasing pregabalin and oromorph for breakthrough they double checked and yes topical NSAIDs are fine. 

At 9 next morning-Thursday by then-saw a nurse practitioner explained the above, got bloods taken for next days chemo and I said I’m considering I will need to stop chemo as I’m losing my little mobility I have left and fear it won’t return which would have a huge affect my health. I left with a promise to speak to the duty doctor and call me back. He did as promised and arrange a topical gel prescription through GP with the words we want you to be able to continue chemotherapy. 

Another day passed until the prescription was sent to the pharmacy. It was for 5% ibuprofen gel. I could have bought 10% over the counter for around £5 two days earlier but I thought GP could prescribe higher levels. I was incandescent! The nurse that morning who delivered my chemotherapy in the obligatory black bag (eek), said you must get on top of this pain level. She saw and heard me. The GP didn’t see me, didn’t understand and I have to assume doesn’t know about pain control. Believe me I couldn’t have done more to self manage last week. I had tens machines and heat pads daily, a relaxation session at Maggies and a Mindfulness class on line too. Frequent naps and lying down with a book during the day added in. Whilst also managing the nausea and many symptoms ( I will spare you those) of chemotherapy. 

I’m not looking for sympathy, I just want people to understand that when someone who lives with chronic pain is asking for help please don’t patronise them whether that is with platitudes or homeopathic levels of pain relief. 

The irony of this experience is I’m currently working with Versus Arthritis on the Pain, People and Place programme in Scotland. In one of my reports I quote from someone who was feeling rather desperate for someone to listen and respond to his needs. So he spoke for me too when he told me that, when someone believes me it makes all the difference. Is that really too much to ask for? 

Right I’m off to lie down now as I’ve finished my midget gems, an important part of my self care you understand. My family have done so many thoughtful things this last few weeks and months. One being a mood moose with home made banners attached. One says hug me, another wine o’clock ( more like boak o’clock currently) and the third is fuck off. Guess where I am currently? 

I love spring….

 I love spring. 

The hopefulness, the renewal of life, the colours, the surge of energy that even we humans can feel, leads to a sense of optimism. To be honest I’m in need of optimism when it seems my spring and summer is likely to be consumed by further treatment for breast cancer, while adjusting to new drugs for rheumatoid arthritis. A powerful cocktail but not the kind you would order for fun. There’s no jaunty umbrella, frozen fruit or champagne in this one. I’m trying to arrange things to look forward to but it’s hard to know what might be possible and when. 

So to cheer myself up I ordered a copy of the book Preventable by Devi Shridhar. I know how to have a good time! It is fascinating and well written  and captures the reader and in my defence I’ve long had an interest in public health. What is so interesting is how much a recent event like this has changed our lives and relationships too. It seems like another time we sat in lockdown, uncertain and fearful and yet even with falling numbers, the virus remains very present. Yes it’s more treatable but the daily death toll still speaks to its dangers. And yet we feel alien now when wearing masks in public. Lone rangers in masks against a tide of denial. How easily we can be blinded to the risks. But I do get that life has to be more than hiding from a virus. I really do understand that. 

Against that backdrop I’ve agreed to more treatment to try to prevent the cancer from returning. The oncologist is very sensitive to my situation and how much my health is diminished and so the treatment is geared to this and I know we all wonder how much I can manage to be honest. But I think I need to try at least as the BRCA2 mutation is proving to be a powerful foe. At times I think I’m deranged to even think about it. At times I think I’m deranged not to consider it. It’s exhausting. 

What has sustained me is time with my family; Easter fun, a wee holiday in Crieff and time with both my children and their families for respite and to keep safe while a very welcome wet room is fitted. Friends too have listened and cared while also discussing the huge issues, especially Ukraine, we see and read about daily in the news. I’ve finally accepted we can’t provide a home to a family at this time but I will do what I can in other ways. The small town of Aberfeldy ( now home to some of the family of course) is showing the UK how to do it. With big hearts they have opened their doors. My Grandson ( aged 3) knows the Ukrainian flag that flies from many local buildings and his Mum and Dad have given his kilt ( as well as other maybe more practical items) to a family newly arrived with a toddler. The sight of him speaking Ukrainian and strutting his stuff in a kilt is food for the soul. And don’t we all need that just now. There lots of soul food out there, I know. My plan is to have as much as I can when I can and for now that’s enough. 

And finally for something that’s worth a whole blog on its own, this month is Ehlers Danlos Syndrome Awareness month. People with EDS have a defect in their connective tissues. It grieves me beyond words that our Granddaughter was diagnosed with this is recent years. It’s such a devastating syndrome and frequently under diagnosed. It’s important therefore that there is more awareness so people can get the support they really need. So I share this for our Phia with so much love , I so wish I could take it away from her.