I have just been for a wonderful walk; early morning with the sun shining and birds singing their little larynxes out. I have a marvellous app on my phone which helps me identify all the birds by song, I am always thriled to discover that not only are there the usual choir but the descants are provided by little treasures like chiff chaffs, nuthatches, siskin and song thrush to name a few. To walk at this time of the year whether in town or country is to have access to a smorgasboard of sights and sounds, a positive reinforcement of life doing what it does.

I have never been a gymn bunny, it has never appealed but walking is something I can do and athough at times I enjoy being lazy, when I do get out and walk to the shops or walk for walking sake, I feel better. I do miss having a dog and I love walking with a friend but putting those excuses aside, when I walk alone I do really feel a pleasure from the leaves on the trees, flowers and plants, birds and bees. There is a tree near here which I absolutely love, I have mentioned it on here before. It is a big old oak tree with spreading branches but you notice some which are dead, barbed wire cuts through its trunk and it has a cancerous growth in a fork of branches. And yet it lives and grows slowly but surely, putting out new leaves every year; takes the barbed wire and the diseases and gets on with it’s purpose.

My latest round of radiotherapy are over and apart from a headache and some tiredness, I am fine. As always friends have been amazing and the wonderful NHS team keep creating masks; using their expertise to diagnose, check, guide machinery and treat those of us who need it. They are all unfailingly cheerful and polite, they bend over backwards to make our experience easier inspite of their own challenges. I was allowed to keep the plaster of paris mask this time as I told them I might use it for fancy dress as the Phantom of the Opera. The lead one was so heavy that I wouldn’t want to carry it back; I was horrified to discover that they use a company to melt them down but the money goes to that company and not to the NHS!

There are so many things that they do so well but managing money is not one of them. Having worked in the NHS for many years I do worry about the furture for it. The powers that be need to consult with the consultants, doctors and nurses and not the managers to ask what they really need. It reminds me of filling in pot holes instead of replacing the entire length of the tarmac road.

Anyway, I am not going to rant. Time for lunch and sitting in my garden trying to ignore the work that needs doing out there. Love to you all and may it be sunny for you too. xEditSpring at last

I have just been for a wonderful walk; early morning with the sun shining and birds singing their little larynxes out. I have a marvellous app on my phone which helps me identify all the birds by song, I am always thriled to discover that not only are there the usual choir but the descants are provided by little treasures like chiff chaffs, nuthatches, siskin and song thrush to name a few. To walk at this time of the year whether in town or country is to have access to a smorgasboard of sights and sounds, a positive reinforcement of life doing what it does.

I have never been a gymn bunny, it has never appealed but walking is something I can do and athough at times I enjoy being lazy, when I do get out and walk to the shops or walk for walking sake, I feel better. I do miss having a dog and I love walking with a friend but putting those excuses aside, when I walk alone I do really feel a pleasure from the leaves on the trees, flowers and plants, birds and bees. There is a tree near here which I absolutely love, I have mentioned it on here before. It is a big old oak tree with spreading branches but you notice some which are dead, barbed wire cuts through its trunk and it has a cancerous growth in a fork of branches. And yet it lives and grows slowly but surely, putting out new leaves every year; takes the barbed wire and the diseases and gets on with it’s purpose.

My latest round of radiotherapy are over and apart from a headache and some tiredness, I am fine. As always friends have been amazing and the wonderful NHS team keep creating masks; using their expertise to diagnose, check, guide machinery and treat those of us who need it. They are all unfailingly cheerful and polite, they bend over backwards to make our experience easier inspite of their own challenges. I was allowed to keep the plaster of paris mask this time as I told them I might use it for fancy dress as the Phantom of the Opera. The lead one was so heavy that I wouldn’t want to carry it back; I was horrified to discover that they use a company to melt them down but the money goes to that company and not to the NHS!

There are so many things that they do so well but managing money is not one of them. Having worked in the NHS for many years I do worry about the furture for it. The powers that be need to consult with the consultants, doctors and nurses and not the managers to ask what they really need. It reminds me of filling in pot holes instead of replacing the entire length of the tarmac road.

Anyway, I am not going to rant. Time for lunch and sitting in my garden trying to ignore the work that needs doing out there. Love to you all and may it be sunny for you too. x

Lead Avenger’s Mask – take two!!

Plaster of Paris mask and Lead mask!

To begin at the beginning, I made a poached egg for my healthy and nourishing breakfast but broke it and all the lovely yellow escaped into the water – a minor tragedy. I then took my boy to school and nipped to the supermarket to do a big shop for us all. Then I came home and had a lovely long walk and talked to my favourite tree. It has barbed wire digging into it and a stange growth but it is still strong and growing and reminds me of me! Then, I awaited the arrival of child number one and grandchild to accompany me to the hospital.

After my driving fiasco, I decided we were safer to go by train. So off we set with raincoats and snacks and it was lovely to be distracted and entertained. Arriving at University station, we set off in blizzard conditions to my part of the hopsital where we were greeted by the lovely Karen, my McMillan nurse. Poppy told her of my experience the day before and she said I should have called her straight away and she would have come to see me, but I said that I would probably have burst into tears. Anyway, she took me to the clinic while the other two went for a walk, she sat with me for ages but unfortunately, as mine was more complicated I was not seen for about an hour so she had to leave.

Eventually, they called me in and I saw my lead mask for the first time, an awesome beast, I asked if I could take it home but they said not. Anyway they led me into a large room with a bed, and a mechanical type arm with a square projector type of machine on the end. I lay down and they put on the mask which was super heavy, after much adjustment and nose squashing they said the machine was coming down on top of it and boy did it! It really pressed the mask into my occipital bones but it was fine and I knew it had to do its job. Obviously I couldn’t see a thing, but they told me to put my thumbs up if I was ok which I obediently did, no idea why I didn’t just speak but it didn’t occur to me. They then left the room and I heard noises and saw some light changes. I had managed to visualise the treatment as of the beginning of the film Fantasia. In it the conductor organises the orchestra and then Disney created images to portray the various notes, some sharp, some dots and dashes, then waves, and then all becomes black before the golden light takes over. I don’t know why I remembered it but it was super helpful to imagine that was what the machine was doing to me. Very soon it was over and they got me up and out, blinking into the light of the wating room where Poppy and Seb were waiting.

Off we trotted to catch our train home but for some strange reason we got on the wrong train and had to get off and come back and start again which meant waiting another hour, so we didn’t reach home until 7.30 having left at 12.30. Luckily Poppy had made me cancel the parent teacher meeting I thought I would be able to attend and when we got home the other two had eaten their pizza and put the lights on to welcome us home. I went straight to bed with a bad headache, feeling exhausted and only ate a rice biscuit as I was done by then. R and H helped Poppy with putting Seb to bed and sorting out her food and a nice drink. Seb had been so good all day and no crying or whinging which was such a help to both of us.

Next day, I got up at 7 to make sure H got to school, his dad came to fetch him and was very kind and supportive to me. We had decided to drive so off we set at 8.15 am and easily got to the hopsital with ten minutes to spare, having found a parking space. After a short wait I went in again for round two, it was much easier this time as I knew what to expect. Just being able to visualise the room and the machine and mask the second time around was much better for me. Same scenario again and afterward I sat in the waiting room having a moment. Pop and S came back and we left and drove home. Suddenly the warning light for the oil came on and I told Pop that we had to stop as I knew that driving an engine with no oil is incredibly damaging. So we pulled into the next garage and bought some oil and topped her up, off we set again without incident.

Arriving back home the faries had been again and there were parcels of delicious food left for our delectation and delight. I still had the same horrible headache so went to bed for a while and then we all had a delightful evening of chat and good food. I got to read to my grandson and sing him to sleep which I love to do. Heaven for me is when all three of my bairns and the wee one are all under my roof.

Unfortunatley, the night was somewhat disturbed by the gorgeous grandson weeping and wailing at four and five am. In the morning Pop told me he had been very sick in the bed so she, poor thing, had had no sleep, he seemed fine later and we concluded it must have been someting he ate. Time will tell if we all go down with a lurgy! They left after breakfast and went back home; as she was leaving I punched the air and said I’ve done radiotherapy now!, she punched it back as they drove away.

I feel very lucky to only be having two sessions of radio and no chemo, I know countless people have way more than me. Due to the nature of my cancer being uncurable I may well have more at a later date and because it is on my face where the skin is delicate, they can only give me so much at a time. There is more on the rest of my fact which may have to be addressed later this year but for now I am done. I go back to see my consultant in a month and see what progress she feels I have made and take it from there. If this is my cancer I feel so lucky that it is not life threatening, that it has been caught in relatively good time and that it is not painful. I cannot praise the NHS nor the Queen Elizabeth Hopsital, nor the teams involved in my care, too highly. We are so lucky that these skilled people devote themselves to their careers and to helping the rest of us when we need them, thank you! I am going for a lie down now!

Once again thank you for taking the time to read this. Today was day one of my ongoing journey with my form of cancer. Today was the mapping day, where they literally draw an ordanance survey type footpath of a map on your face in order to accurately target the area for radiotherapy.

Blithely I thought that I would be totally fine driving myself, after all I like driving and it was a non invasive appointment. Unfortunately, the car park was totally full when I got there. Everyone was behaving in a rather demented manner, car drivers were driving the wrong way around the system desperate to find a space; cars were abandoned in illegal places; drivers were cross and stressed. I had allowed myself two hours from home (a one hour journey) but I sat in the car park ramps and watched the time ticking away, unable to go forward or backward. I began to panic and rang my dear daughter to ask her to ring the clinic and tell them. By now I had five minutes to park the car and find the right place in the hospital. Hearing her voice made me cry and have a slighlty uncontrolled panic reaction, she calmly talked me down and dealt with the situation, calling me back and saying they would meet me in half an hour. (Thank goodness for Propanolol) I managed to get out of the car park and seeing a slight indent on the road (meant for passengers) I abandoned the car there and ran in.

Due to the chaos in the car park, all clinics were running late and in fact I was not seen until an hour after my appointment. I didn’t like to go to the loo again or get a drink in case they called me, my stomach was like a washing machine. Eventually a young girl came and got me and we went into the room where my doctor soon came and patted me on the shoulder of my rather dashing gold and blue jacket I was wearing to feel invincible in. Lying down, she spoke to her student and said “Meg has very widespread MF on her face so we are going to treat a little bit at a time and see how she responds” so far so good. She took out her sharpie and dashed away – I had remembered to bring my towelling hairband to remove my unruly fringe – go me! They discussed the impossibilty of having the mask made of lead as it would be simply too heavy for my nose! Instead it will be made of a compound structure but crucially will protect my eyeball – I mean they don’t work that well but they work and I would quite like to keep them that way. She left and I was left alone to take a selfie – definitely not going to sail a thousand ships but quite fascinating.

Move to next room and lie on another bed for the application of spa treatment type mask. Lots of chatter between the technicians and then slap down comes a rather heavy, cold, wet and strangely minty smelling thing covering both eyes and across my nose, to each temple and up into the high hairline. Then they apply plaster of paris and wait, the rash on my face stings at the slightest thing and this was not great but I knew it had to be done. They were both pleased with the mask when they suctioned it off taking some straggling hair with it – from my head! Up I got and they said thanks and goodbye.

I must say I was relieved to find the car did not have a boot on it and had not been towed or even issued a ticket. I got in and drove an hour home, I was really exhuasted as it was now 5 and half hours since I had left home. Just got in and made a cup of tea and was about to make myself go out again to pick up the youngest from school when there was a knock on the door and a kind and lovely angel came with a hot quiche and some beautiful homemade cup cakes.

Now I am back in again and having a glass of wine – cheers to you all. Tomorrow is day one of the radio so I will see what that is like. I am taking the train!

First of all may I say thank you to those of you who have read my blog, in a busy life it is not always easy to find the time to read all the things out there in the ether. Some of you will know that for me the last three years have been challenging to say the least but I have been vastly helped by the love and support of friends and family.

So now I have a new challenge and I am hoping to make my blog into a way of sharing and I hope that it won’t be self indulgent – let me know! Since 2020 I have had a red rash which began on my forehead and has gradually spread over more than half my face. At first I assumed it was some kind of psoriasis and due to Covid and various unexplained factors, it was not possible to see the GP. I sent in photos and it was not until I discovered a mole which I didn’t like the look of, that I eventually got seen. I was sent to a hopsital and told it was a BCC and needed to be removed. This turned out to be a blessing in disguise as whilst I was having it removed I begged her to look at the increasingly unsightly rash on my face. Luckily for me she went and had a word with a colleague; a dermatologist who popped in to take a look and instantly disgnoised discoid lupus.

At another hopsital appointment and after taking a couple of biopsies and blood tests, I was happily getting my head around the whole world of lupus and anti inflammatory diets – a brutal regime! Anyway, I then got a letter just before Christmas in which my dermatoligist said she had taken my case to a tribunal and one of her colleagues had suggested a type of lymphoma. In the letter she reassured me that she did not think it was the case but it was better to be safe. Needless to say, I didn’t tell anyone about the appointment until after Christmas and went up to Birmingham hospital with a dear friend.

I was extremely shocked to be told there and then it was definitley cancer. Not only that but a very rare type of blood cancer (not skin cancer) for which there is no cure. However, they can treat it with radiotherapy and it is not life threatenting. Having thought I would leave the hopsital within half an hour and trip merrily home, I was in fact there for three hours having more tests and biospies. The lovely MacMillan nurse said that I would not take it all in on the day and that she would ring me in a few days to see what questions I had.

The C word is a chilling and challenging word and one which we all have some kind of fear of. There are very few of us who have not been affected by it in our lives one way or another. To be told you have it, whatever kind it is, will be frightening and difficult to hear. Our minds race on and not always helpfully. For me, the first thought was of my wonderful three children and how to tell them. Needless to say they have all been amazing and so supportive, as have my girlfriends. The wonderful thing that happens is that kindness and love pours like a river towards you, flowers and hugs arrive, offers to help with lifts and children, friends who just listen and others who offer advice and practical help. The grapevine travels in intricate ways and relieves you from having to explain it again. Occasionally you feel like your batteries have been removed and you can only sit in a heap, at times you cry at the unfairness and the unknown but at others you feel strong and pragmatic about the coming journey. Those who spend time will get all of the above emotions and be able to be there for you whether you cry or laugh – and you do laugh. You make dark jokes “I can’t do the washing up I have cancer or could you fill the logs please, I have cancer”! It is also refreshing and helathy to chat about all the other things which are continuing in life in their inexorable way. Children doing exams, having birthdays and grandchildren who are blissfully unaware so grin and stomp about, taking you out of yourself.

I am still waiting for the dates for my radiotherapy, they have to make a special lead mask for me as it is so near my eyes. I imagagine a kind of Marvel character and might well wear a cape when I go. Having had a CT scan for my lymph, going into the loo to change out of the hopsital gown and standing there with no top at all, boobs on full display, a fellow male patient burst in upon me much to both of our consternation. Of course I thought the door was locked! Then he made it worse by apologising as I had to sit beside him in the waiting room – no! Let’s hope our subsequent appointments are scheduled for different days!

There are going to be challenges ahead but I feel truly buoyed by the loving kindness around me and by the way I fully intend to be here for another 40 years! x

I have been thinking a lot about trust lately. If you are lucky enough to be a parent you will know the soul tingling feeling of having your baby look unblinkingly into your eyes with complete trust. As the baby grows and learns they learn that the world is not all candy floss and pretty clouds; they may get hurt. Indeed the first time my beloved beautiful little girl had to be stabbed with an injection she was looking with love into my eyes and the realisation of pain and my overwhelming need to reassure her and not to let her think I had caused the pain were confusing for both of us.

Later of course all three of my children experienced pain and disapppointment in different ways, they even learned that when Mum says one thing the reality may change; for example we will go and see your friend next week and it doesn’t happen or they thought they would get hot chocolate after swimming again because they got it last time but Mum said not this time; or they thought I would say goodnight to them and read a story but they got a quick goodnight instead – a million little disappointments in their lives which change the level of trust. Mum does not always make me feel great.

As they have grown older they have broken my trust in them too. As have many of the people in my life, friends who say they will meet up and then cancel at the last minute; parents who you think will love you no matter what but then they don’t; husbands who promise to take care of you and then break your heart; loved ones who die and leave you alone. “For each man kills the thing he loves, yet each man does not die” so said Oscar Wilde. Those who have their hearts broken do not die but are left to pick up the pieces, each time. When those you love most like your children, break your trust you go on believing and giving them second chances for you grew a heart of gold for each one and gold is hard to break.

Sometimes in order to function in this world we have to cast off the things that are most damaging to us until we can truly heal and then we can continue to give and love those around us who truly deserve our love. Maybe in time we will be so strong we can build the trust between ourselves again. In the meantime we need to go gently and protect our own fragility.

In some ways it seems like yesterday and in others – eons ago. Crunching over beech nuts I managed to catch a leaf while walking the dog yesterday, it made me smile out loud. When I say walking the dog, it’s more like both of us turning in circles in a roughly straight line. The new puppy is nothing if not challenging. I had forgotten just how challenging! Its name quite apporpriately is Damage – before you judge me, blame my children. She has so far bitten through the table legs – It happens to be an antique table inherited from my mother which has survived many previous dogs. She has had a good go at the internet hub and any wires or leads she can find. Having barricaded all that in with wire netting, she has bitten through the wire netting. I spend most of our waking hours sitting in the kitchen with her so that she does not feel abandoned – makes no diffference. The amount of wee and poo which comes out of her is remarkable, no matter how many times I walk into the garden with her she delights in springing back inside and promptly weeing on the floor. Puppy pads just provide endless entertainment as does newpaper – both make a delightful rustle if you play with them.

We are finally allowed to go for walks with her after her vaccinations and the hopes that she would be exhausted and peaceful afterwards soon disappeared like whisps of dreams. She has not quite grasped the requirement to walk forwards along the path and turns in 360 degree circles like a whirligig. Occasionally a tree or a lampost bring her up short as her ribs crash into it, she turns summersaults and twists the lead continually around whoever is walking her. The first time she saw another dog she stopped still and then Tigger-like bounced up to the poor thing who watched with haughty disdain.

I try to tell myself I am getting serotonin and dopamine from the delight of watching her and cuddling her but she is also a definite challenge to the patience resevoir. The kids adore her and child 3 lies along the length of the kitchen floor while she climbs all over him biting various fleshy parts. He soon learnt the lesson of not wearing shorts in her presence having been raked by razor sharp claws. Child 2 tries hard to bring training and philosphy to the proceedings thus far succesfully feeding dog one side and her cat the other side of the door at the same time. The idea is that eventually they will be able to be in the same room without the dog chasing and the cat running for her life, as happened with the previous sight hound. The problem is that there are instincts which override anything a human can try to instill. Damage is the same make as the previous lovely Pie, I used to think she was not well behaved but I now realise just how calm and indeed bidable she was. Pets are of course, the heart of the family and such an important part of young people’s lives growing up if you are lucky enough to be able to afford them. They do help with our mental health – I keep telling myself that anyway.

Right wellies on and off for another sunny autumn walk. Right- sit, no, wait, hang on, sit, siiiiiiiiiit.

As I write this, I am looking out of the window at a grey rainy day, we had two beautiful sunny, hot days and now back to Autumn. Actually I love our English seasons, I would hate to have guanteed sun or cold, it’s an excuse for more clothes in your wardrobe! (Note to self, try not to use too many exclamation marks!) Now do I eat cake or do I make toast with thick butter and jam? A cup of coffee is definitely too wet without either.

I am thinking about milestones, family and friends; I recently realised with shock that I am zooming towards a very big birthday. It is a strange thing that we put so much emphasis on what is in fact, just another day (well some of us do). Why is it that we feel numbers make so much difference? I think we are aware of numbers from an early age, if you come from a loving family your special day will probably be celebrated, even if you get wished well. Presents are lovely, beautifully wrapped or handed over in a carrier bag; but cards are really more meaningful. I feel guilty for this as I tend to send a message these days, especially since stamps are so expensive. However, if someone bothers to go out and buy a card and write something inside it that is just for you (please don’t just sign your name – too lazy) it is special on a different level. I still have some of the birthday cards I have been given over the years and in some cases they are from loved ones who are no longer here so they are really precious. It is just one day where you can be the special one – unless it falls at Christmas time. As twins hopefully you will each have attention given to you but you might be the kind of twins who are happy to share it with each other.

Speaking for myself, I remember some great birthdays, one picnic party in the woods where huge ants bit everyone; one on a boat down the river with kingfishers flitting by; one where I was given an Elvis denim trouser suit which I loved; one when I was very little where I was given a dress with a rustly petticoat made of paper; lots where it was just us at home as mum couldn’t afford a party but I still got cake and fuss. When my children were gowing up, I always made them cakes for birthdays no matter how disastrous they were. There were some classic ones – some looked amazing and some really terrible, but the love was there. I used to also give them a half birthday exactly six months through the year, an excuse to have some fun or give them a present they needed. They would get a cake cut in half and a card the same.

Another thing about birthdays is that they sometimes make me think about where I am and where I’m going. Big milestones cause contemplation of past and future. So I’ve decided I have about 40 years left, maybe more. The mistakes of the past are just that – past tense – nothing to do there, except I can go on as I mean to. I intend to learn a new skill, I want to conquer an old one I put down a while ago; I hope to make a success of my business; I will throw a party or two; and importantly, just spend time with people who make me feel more like myself. The core coterie of comrades who have been with me through thin and thick – those I can laugh and cry with, share crises with each other, and really care for each other; with whom I can go skinny dipping; on picnics; drinking and dancing; coffee, cake and yoga; children, dogs and weekends away; making time to be in our happy places. I can’t wait to get started!

Have a great one if it’s your birthday. Card is in the post! If it isn’t your birthday have a lovely unbirthday and treat yourself just because.