As The Curtains Close

Where do I begin? I have been thinking a lot about writing this, composing bits and pieces in my head and then never quite making it to my laptop. Having an infant will do that for you. I call Master Safaie my Tyrannical Overlord (and sometimes much worse things than that) although I suspect he is probably more similar to Johnny Vegas on a binge; constantly demanding something to drink and prone to angry outbursts, falling asleep, throwing up or soiling himself. But I digress.

After Mum died we kept very busy. After the big move from London to Lincolnshire there were still quite a lot of boxes to be unpacked due to the fact that unpacking is a rubbish job and there are better things to do with limited time and energy. With both time and energy, Mr Mason Jr and I decide to tackle Mum’s office. We both feel quite upset doing this, mainly because we come across many new items. Some things are clearly gifts for other people whilst others are things that she has bought for herself and never used. It feels like a sad, tragic waste. I wished that she had gotten the chance to use and enjoy all these things that she had bought or had been able to give them to the people she intended them for. She took great pleasure in buying things for other people and really thought about what others might like. I am happy to find the wooden toys that she told me she bought for Master Safaie (before he was ever conceived I might add and I think before I was even married which Mr Safaie found a bit peculiar when Mum told us these items existed) and I squirrel them away for when he is a little older. I come across lots of art supplies and several ‘Mindful Colouring’ books. Mum took a mindfulness course a few years ago and much to my annoyance was forever going on at me to practice mindfulness in my life (probably because I am prone to the odd explosion). “Nooooooo! My brain won’t let me, Mum! It doesn’t work, I can’t only think about one thing at a time!“ I wailed. She went on about it so much that in seeking validation I actually Googled ‘Mindfulness is a load of bollocks’. Believe it or not, at the time it was not one of Google’s suggested searches, much to my chagrin. Coming across these books now, I decide that I will keep one and some of the coloured pens and pencils for myself and have a go. Not really proper mindfulness I don’t think, but I’ll chalk this one up as a win to you, Mum. We also come across Mum’s large selection of wigs and because it is probably the law, we put them on Master Safaie and he looks a bit like a little troll, or maybe one of the Real Housewives of New Jersey after a rough night. In addition to the nice stuff, there is a lot of totally pointless crap that only Mum would have bought. For example, we find an entire laundry basket full of bandannas of all different colours and patterns. Were they for Mum when she lost her hair at various stages? No. They were for the dogs. A whole basket full of them. Mr Mason Jr and I roll our eyes and exclaim a lot during our ruthless sorting/ sibling therapy session.

Mr Safaie flies back from Thailand for moral and practical support with Master Safaie and we all take a trip to the undertakers. Mr Safaie walks around Spilsby with the baby while the Mason men and I talk about the arrangements. We have had a change of heart about what Mum should be wearing and decide that she should really have on her skull and crossbones trousers that she wore in defiance to so many of her chemotherapy infusions. The funeral director looks a little bemused but smiles politely and tells us to drop off the clothes once we have them sorted out. We then go on to haggle with the funeral director over dates. As it turns out, the earliest available date for the funeral was the date I was due to fly back to Thailand. My poker face is rubbish and I am unable to hide my frustration that it will be almost 3 weeks after Mum died. I worry that Mr Safaie will be put in a difficult position with work since he has taken so much time off this year and is already well over his allocated allowance. As is turns out he was due to go on a work trip to New York and with the dates of the funeral he could still go and be back in time. He suggests that I join him and I decide that actually, yes I would like to go. I worry about it being a crappy thing to do to Mr Mason but he tells me to go too and so I set about sorting out the travel arrangements and the ESTA for the States (the advanced visa thingy where you fill out a load of info and they grant you permission to enter the country or not). As I am filling them out I chuckle to Mr Safaie that he will be getting a cavity search. Amongst questions such as “Are you a terrorist?” they ask if you have ever held a passport from another country. Mr Safaie held an Iranian passport back when he was a child so I note this down on his application. The ESTA was granted so we think no more of it until we are at the gate at Heathrow and are invited to pre-board on account of Master Safaie. The woman at the gate scans our boarding passes and then shuffles off for a moment. “Oh, you have been randomly selected for an additional security check, Sir” she says. As a half Iranian man with a very Iranian name, Mr Safaie is quite used to ‘random’ security checks. We are lead away and his belongings are rifled through by 2 security personnel. He gets the all clear and we head to the plane. “Phew I got away with that one” he says to me. I ask him what he means and he grins that there was a book that he forgot about on ‘The Rise of Isis’ in his backpack. Genius move, husband! Our flight is delayed by a woman who, as the plane is taxying to the runway, barrels down the cabin to vomit on one of the air hostesses. We then have to wait 2 hours for the paramedics to come and collect her during which time Master Safaie becomes increasingly impatient sitting on my knee. Mr Safaie takes him for a bounce around the plane and returns with gossip that according to the air hostesses, the woman is sick because she took anti-anxiety tablets with loads of wine just before flying. Having left the house at 3am that morning for the drive down to Heathrow, I lament that we could have had 2 more hours in bed. At least the entertainment system is working.

America is a nice break and the weather is just gorgeous with clear blue skies and sunshine with autumn well and truly underway and fantastic colours in the trees. I find that I am surprised at just how surly Americans can be. Perhaps I am too used to the ever-smiley Thai people or maybe my perception of how they will be has been warped by years of watching Americans saying “Have a nice day!” on TV. When I say we were going to New York, we are actually going to Norwalk, Connecticut which is about an hour away from NYC. The city of Norwalk is quite pretty but we are staying very close to Mr Safaie’s office for the week in an area which reminds me of Park Royal in London; a bit industrial looking, many lanes of traffic and strip malls at regular intervals. It is not an ideal place for pedestrians but Master Safaie and I give it a good go anyway and spend most days wandering about and getting confused about when is the right time to cross the road. I investigate local florists online for Mr Mason and send him suggestions for arrangements that I think Mum would have liked. Mr Mason’s friends keep him busy by taking him out to the bubble car museum, the pub, a brewery and the beach.



Our trip goes quickly and before we know it we are back in London again. I feel a bit like I am on a travellator and observing things as they come up but not feeling fully engaged in the process. On the day of the funeral, Mr Mason Jr meets us at our hotel and we drive to Mortlake. It’s incredibly close to our hotel but Mr Safaie puts Mortlake station in to the satnav instead of Mortlake crematorium which means we drive past in and then get stuck in a bit of traffic on the way back. There is plenty of time but I feel incredibly stressed by this simple mistake and should probably have had my mindful colouring book to hand. There are a lot of people I haven’t seen for ages milling about it’s all a bit overwhelming. I speak to a few people and wonder where my husband is. Mr Safaie had been at the car putting Master Safaie into his baby carrier but is now nowhere in sight. He runs past me shortly afterwards clutching the baby with a wild look in his eye saying “it’s an emergency!” so it becomes clear that Master Safaie has committed one of his well-timed dirty protests and I wonder if there are baby changing facilities at a crematorium. I spy Mum’s sister and her family who I haven’t seen for at least 14 years and I go and hug my auntie, uncle and cousins. Families are such complicated and confusing beasts. How sad to miss out on all the assorted joys, hardships and triumphs of a decade and a half and only reconnect for the worst time of all?

Mum arrives and the flowers on top of her coffin are lovely with a mixture of Amnesia Roses and Anemones which she loved. It’s so pretty and I feel glad that we didn’t go for the traditional white lily spray. By the time we are heading in to the chapel, Mr Safaie is still nowhere to be seen so I take my brother’s arm and we go in together with Ms Atherton on the other side. I think I hear Master Safaie fussing somewhere at the back of the chapel later so I am happy they made it in. Mr Mason’s uncle is conducting the service which sadly is something of a family tradition as he only recently conducted his brother, Mr Mason Sr’s funeral in January. Mr Mason reads out a poem ‘How bright the wit’ which was very fitting and afterwards he and I held hands and cried together as The Fairport Convention song ‘Farewell Farewell’ played. People often talk about ‘a nice service’ but it really was. Not only was it nice but it had funny moments because she was funny, my Mum. We shared some laughs over Ms Marsden’s recollection of ‘The Biodanza Incident’ and remembered Mum’s tenacity as Ms Howard spoke about Mum completing the Vogalonga with an as yet undiagnosed pneumothorax and lung metastasis. We smiled and laughed some more as her friend Ms Wills-Wright read out entries from Mum’s blog about our perfectly, imperfect Christmas last year. It made her so happy to have all the family around and I still can’t quite believe we managed to pull it off.20161020_130936

As the curtains close around Mum and we get up to leave I see that the two Safaie boys are now sitting behind me. We leave the chapel together and stand around outside speaking to more people. People are all very kind and several ask if I plan to continue writing Mum’s blog. I wasn’t really sure and although I know that I will write a post about the funeral I don’t know if I can see myself writing on her blog beyond that. I decide later that I will set up my own and buy the domain name but it remains to be seen if the tyrannical Master Safaie will allow me the time to write it, I will do my best. There were quite a few people who were unable to make it to the wake and who I didn’t get the chance to speak to. I feel bad about this when I realise and hope that nobody thought me rude. On entering the pub for the wake we see Jeremy Clarkson sitting and being his normal smug self. “Did you arrange Clarkson to be there?” many people ask me. “What would Mum have thought about that?” Not a lot probably, I think. We have a private room which is packed by the time I arrive. For some reason they only have one person taking orders for table service who is looking a bit overwhelmed. She keeps forgetting who has ordered what so I ask her to bring several bottles of wine in the hope that it will eliminate a bit of pressure. Mr Mason and I drink gin and tonic which was Mum’s funeral drink of choice and mill about talking to people. It still feels surreal and many people tell me that they will be keeping an eye on Mr Mason. It feels good to know that so many people will be surrounding him with their love and looking out for him. As things are winding down I speak to Ms Lavoll, Mum’s Norwegian friend. “It’s so shit” I say and she agrees but she also reminds me that I am lucky to have had Mum in my life. “Other people have mothers who live until 90 and would still never have gotten the same pleasure from their Mum that you did.” She is right but it still hurts.

The next day is Mr Safaie’s birthday. With everything that has gone on I haven’t bought him a single thing. I began to make him a Moonpig card but then Master Safaie demanded something or other and I never finished it. I confess that he has nothing for his birthday. ‘Oh?’ he says with a hopeful smile. ‘Sorry darling’ I say, ‘this is not one of those times where someone says they haven’t done something as a joke but then they really have.’ He looks a bit crestfallen but doesn’t make a fuss and I promise to make it up to him later. We meet Mr Mason at the crematorium to collect Mum’s ashes. She is divided between 3 scatter tubes and a biodegradable box. Mr Mason plans to put Mum with a newly planted rosebush in the garden and to scatter her ashes in 3 other spots, one of which include Portsdown Hill where his own father fell off in comedy fashion while scattering another of our relative’s ashes. The scatterings will be open to all since I know some people who wanted to come to the funeral were unable to. Once they are arranged I’ll post the details here.

After collecting Mum’s ashes we head for lunch in pub close by and Archie and Lark join us, trotting happily along wearing a couple of their aforementioned bandannas in a raffish fashion. I bring a box of photographs along to the pub that Mrs Wilson, Mum’s sister, had given me the day before. The box contains decades’ worth of pictures of Mum, Mr Mason, Mum’s family and Mr Mason Jr and I in the early years. There are some brilliant pictures of Mr Mason Jr looking young and cheeky so I send a copy to Ms Atherton. There are many photos that I have never seen before including some of my Mum holding me in hospital shortly after my birth. Going through them I feel ambivalence; a gratitude that I have them now to look through and at the thoughtfulness in bringing them but a hot cross feeling that they were not seen earlier and that Mum never got to look at them with us. I show Mr Safaie a few of the pictures and he looks at them with a puzzled expression and asks who I am with. It’s not me, of course but Mum and the resemblance between us is close enough to fool my own husband. It’s soon time to wave Mr Mason off as he makes the long drive back to Lincolnshire and we promise to see each other soon.


And so, that’s it for now. It still doesn’t feel real, for me at least. My sister in law, Mrs Larkman told me that after her Dad died, the grief hit her in waves and I think I know what she means. My grief is there, bubbling away under the surface and rises up to smack me every time I think “Oh, I must tell Mum that!” and then realise I can’t. At the airport on my way back to Thailand I feel incredibly sad and realise that I associate airports with Mum. All those times she was waiting for me with Mr Mason as I landed at Heathrow and the times I picked her up from Bangkok’s Suvarnabhumi airport. I liked to arrive early and while the time away by trying to pick out her silhouette from behind frosted glass by the way she walked. I managed it the final time in June when she came to visit Master Safaie against medical advice. I followed that silhouette as it turned the corner and became my mother, a tired but defiant woman clutching a large lilac coloured handbag and smiling broadly.

Goodnight, Mum. I miss you every day.


AKA: Mrs Safaie Jr


Funeral Details; All Welcome

This week we have been mainly making arrangements. We consider where might be the best place to have the funeral and settle on London. It made the most sense to us given that Mum spent around 35 years living there but also, Mum had an enormous number of friends. Whilst the bulk of these were in London there were still a fair number dotted about all over the place so with London being easily reachable for our family in Portsmouth and with good transport links nationally and internationally for those further afield, London was the clear winner.

And so, Mum’s funeral will be at Mortlake Crematorium (Townmead Rd, Richmond TW9 4EN) on Thursday 20th October at 12:00

This will be followed by a wake at The Pilot, Chiswick (56 Wellesley Road,Chiswick,W4 4BZ). The pub is within a 15 minute drive of the crematorium and has paid parking close by. It is also just by Gunnersbury station so easily reached from the crematorium by either District Line or Overground trains from Kew Garden station.

Over the past week we have received a huge number of messages of support; from friends Mum has known for decades, more recent friends and even those who Mum has never met in real life (a happy byproduct of shitty cancer). Mum touched many people’s lives and all friends, old, new and virtual are welcome on the 20th.



(AKA: Mrs Safaie Jr)





Bye Shelley, see you soon, darling

In the days running up to Mum’s appointment with her oncologist we see less and less of Mum. She is there physically, of course, but there are fewer glimpses of her. She is back to sleeping through the days and is more and more difficult to rouse. Sometimes I creep into her room and lay next to her on the bed while she sleeps, wishing things were different. We tell her we love her a lot and Mr Mason, Mr Mason Jr and I spend lots of time together working as a team helping to move Mum and with her meals and tablets. At the beginning of the week Mum stops being able to use a straw and we know that we are in big trouble. We try many different techniques and have some success with a spoon and later with a syringe. Taking tablets on board is hard but we muddle through it.

Wednesday morning rolls around and Mr Mason and I know that we will have to see Dr C on Mum’s behalf. We leave her in the capable hands of Mr Mason Jr and Ms Atherton and make the trip to Lincoln with Master Safaie. Dr C is kind but straightforward which are qualities that you want in an oncologist. He knows immediately from Mum’s absence that things were bad. After listening to us he tells us that sadly the radiotherapy hadn’t worked as we had hoped it would and that we have come to the end of the road. Chemotherapy would not be of any benefit to Mum at this point and he tells us to make use of Marie Curie, Macmillan and the Hospice and Home team who we are already in touch with. Dr C tells us that he has enjoyed taking care of Mum and he seems genuinely upset at the way the cookie has crumbled. As we go to leave, Mr Mason tells Dr C that he is extremely glad that Mum ignored his medical advice and came out to Thailand in July to see Master Safaie. Dr C smiles and says that he is also glad that Mum ignored him and that he secretly hoped that she would although with his official Dr hat on he could never have said that at the time.

That afternoon, Mum’s Macmillan nurse visited us and helped us to get Mum a bit more comfortable in bed. It was a difficult task; the comfortable memory foam mattress not really conducive to safely moving and positioning someone. On the advice of all the nurses and support staff we decide to accept an inclining bed in order to keep Mum as comfortable as possible. Mum’s Macmillan nurse is fabulous and works fast to ensure that we have one the very next day.

Probably the only person oblivious to the unfolding horror is Master Safaie. There is something to be said for having a small child around to remain cheerful for. We play lots of ‘flying baby’ and take many smiley pictures. The Mason family also has a rich tradition of making up stupid songs including such titles as ‘Whoosh! Bardney-doo’ and ‘Are you a nincompoop? (The answer’s yes)’ so I try to entertain myself and others by writing a modern day nursery rhyme called ‘Brexit means Brexit’ which gets a few giggles.


On Thursday the bed arrives and the district nurse joins us to set up the mattress and help us move Mum across. Instead of the smooth transition we were hoping for, what occurs could have been set to Yakety Sax. The nurse tells us that the new bed is set up with the head of the bed pointing towards the window which is the opposite way that Mum’s current bed faces so we decide the rotate the new bed in order to ensure continuity for Mum. After rotating the new bed 180° (which is a bit of a tight squeeze) we slide Mum across from her old bed to her new bed in two or three movements. “Who wants to try the buttons?” asks the district nurse so Mr Mason obliges in order to raise Mum’s head. He presses the buttons and Mum’s legs begin to raise. The district nurse pauses for a second and then makes a face like someone who just remembered they left the gas on. She grabs the buttons and confirms that she has made a mistake and the bed is now the wrong way around. We have to move Mum back into her old bed, rotate the new bed once more and then transfer her across. We do all this as smoothly as we can but it isn’t comfortable for Mum and we apologise a lot. The district nurse is clearly mortified and keeps saying that this has never happened to her before (and I suspect never will again). Mum had been unable to take her steroids this morning as her ability to swallow anything had now gone and so the district nurse helps to arrange for a liquid version that can be delivered through a pump driver to be prescribed. Unfortunately, it is tricky to track down and although behind the scenes 14 pharmacies across Lincolnshire county are called, it isn’t available until the following day.

On Friday, Mr Mason, Mr Mason Jr, Ms Atherton and I surprise each other all morning by walking into Mum’s room to sit with her only find one or more of us already in there. We spend a lot of time with her and I sit Master Safaie in the crook of her arm and I continue to read her all the messages of love and support that she received through Facebook, her blog, text messages and emails. That morning I receive a very long and lovely email from her friend Ms Halford, whom she met whist training as a magistrate. This was a chapter of Mum’s life that I had all but forgotten and it was nice to be reminded of now. In spite of the email opening with “Shag Bandit!” and being signed off “Rubber Knickers xxx” (their nicknames for each other) behind the humour it was full of love and sadness and I feel choked up as I read it. Ms Halford was also the friend who accompanied Mum to the appointment for her initial diagnosis so there was a poignant symmetry in reading Ms Halford’s loving message today, bookending Mum’s journey with cancer.

Mr Mason, having picked up the liquid steroids busies himself with trying to get hold of a district nurse to administer them. Mr Mason Jr and I go to select some more music to put on for Mum to listen to since her Sandy Denny album had just finished. We flip through various CDs and joke inappropriately about putting on the ‘Family favourites’ CD (track number 1 being ‘The Laughing Policeman’) but finally settle on a Dusty Springfield compilation.  The district nurse arrives and sets about giving Mum some more meds to keep her comfortable as well as the steroids. Meanwhile we try to get hold of Mum’s siblings to see if they can speak to Mum over the phone; her sister is due to arrive on Tuesday but it seems unlikely that Mum will be hanging on until then. Mr Mason reaches Mum’s sister and he holds up the phone to Mum’s ear. She speaks very gently to Mum, saying that she very much wants to see her on Tuesday and Mr Mason is sure that he sees recognition in Mum. The district nurse is still there and stays for a while longer organising more meds to get Mum through the weekend.

Once the district nurse leaves and Mum is looking more comfortable we all head downstairs, feeling better now Mum had received her steroids and a little more relaxed than we had felt all day. I speak with my husband on Skype and Ms Atherton makes some toasted sandwiches for a late lunch. At about 15:30, Dad pops back up to see Mum after eating his sandwich, coming down almost immediately and saying “I think she’s just gone”. We run upstairs, her bedroom strangely quiet and I check for her pulse which is absent.  She was still warm and it seems as though she has only just slipped away. It’s all very surreal and we have only a few moments to absorb what has happened before the phone starts ringing. I’m not sure who it was but it was regarding Mum as I hear Mr Mason tell whoever it was at the end of the line “I think she has just died”. Mr Mason Jr and Ms Atherton take Archie and Lark upstairs to see Mum so that they know she is gone; this is something that Mum wanted and another reason that she was determined to remain at home until the end. The cats prove harder to wrangle but Mr Mason manages to find the small psychotic cat that Mum loved and takes her up for a farewell.

The Marie Curie rapid response team arrive a couple of hours later. They complete some paperwork and wash Mum before dressing her in fresh clothes, explaining to her what they are doing the entire time which is rather nice. Mr Mason calls the funeral directors and we say our goodbyes to Mum before they arrive about an hour later. The staff that arrive are nice enough but bring with them an odd formality which stands in stark contrast to everyone else that has been in to visit Mum over the past couple of weeks. We sit downstairs in the sitting room whilst they bring Mum down the staircase almost silently and put Mum into their vehicle. We stand by the gate as they depart, Mr Mason following the van to the entrance of the driveway waving her off “Bye Shelley, see you soon, darling” which brings a tear to my eye.

On Saturday we decide to take the dogs out to one of the last places Mum visited, Huttoft beach. It feels peculiar to have us all in the car at once without one of remaining at home with Mum. It’s a beautiful sunny day and we walk along the beach whilst the dogs run around racing and trying to bowl each other over. A middle aged woman is beachcombing for treasures in a drift line and Lark decides this is the perfect spot to have a poo to the hilarity of everyone but the woman.  Another few people arrive and paddle out into the shallows to deposit the ashes of a loved one into the sea, cheering as they do so. Life goes on, even if it won’t quite feel the same as before. We have things to do and a funeral to arrange; details to be posted as soon as I have them.



(AKA: Mrs Safaie Jr)



My daughter’s German Cousin

This blog has been a long time in the making. This is Mrs Safaie Jr, Shelley’s daughter and I’m taking over on the storytelling and typing today on Mum’s behalf since she is not well enough to do either at the moment. A lot has happened since Mum’s last post and I will do my best to fill in the gaps, although the storytelling might not live up to the level and wit that my mother writes with.

It all started with a bit of falling over. Mum wasn’t sure how it had happened; one moment she had been standing upright and the next she was toppling backwards and fell into the shower door, cracking the glass. She fell in front of the house on another day not long after that, the ground whizzing up out of nowhere and had to be hauled up unceremoniously by Mr Mason and a helpful neighbor.  Mum has always been a woman who falls over (famously once on holiday in Greece she turned back to us to warn us to be careful on the gravel, as mother often do, and promptly pitched forward onto her knees and cracked her kneecaps) so these recent topples didn’t seem totally out of character.

The falling over was mentioned in passing to the family GP during an appointment for a sore throat who thought it would be best for mum to speak to the oncologist, so off to Lincoln she went with Mr Mason. Mum saw a locum who performed a low-tech but effective test by moving his finger around in front of mum’s face and discovered that her field of vision was impaired. He thought that it was likely caused by metastasis in the brain but was pretty confident that it could be treated by stereotactic radiosurgery; an extremely precise radiotherapy to blast brain tumors into smithereens. Although Mum already had a brain scan scheduled a few weeks ahead, it was decided that it would be best to move it forward to take a look at what was going on, so he admitted mum and she waited overnight before having a CT and MRI scan.

The results were not what we wanted and revealed that whilst there were several blastable tumors within Mum’s brain, one in the occipital lobe had begun to creep into the lining of the brain so the precise radiotherapy was off the table.  Instead the plan was for Mum to have 5 days of whole brain radiotherapy followed by a chemo regime to be decided by her regular oncologist. The doctor giving the news said he was sorry and thought that Mum had about 3-6 months left to live with treatment. This was not only upsetting but surreal. Mum didn’t feel ill; she was tired and a bit wobbly and couldn’t remember some things, but frankly none of these were really new symptoms. After the initial shock mum and Mr Mason pushed forward with the same steely determination that has served them well these past 4 and a bit years. The hospital moved fast and began her radiotherapy on a Thursday, having a break over the weekend and starting again on Monday. I flew to the UK from Bangkok with Master Safaie on the Tuesday which was thankfully uneventful apart from an explosive poonami part way through the flight which resulted in Master Safaie’s soiled onesie being put into a biohazard bag. On Wednesday we travelled up to Lincolnshire on the train with my brother, Mr Mason Jnr. It was a beautiful sunny day and once we got home we sat out in the garden underneath the apple tree. Mum was tired and found reaching for words to be a bit tricky but she reiterated that she didn’t feel ill.


Two days later we went to the hospital for an appointment with Dr C, Mum’s oncologist. Mum was exhausted and finding it increasingly more difficult to reach for words but she powered on for the appointment. Dr C proposed that Mum go back onto Paclitaxel (the chemo she had been on before moving onto Kadcyla) and have it every week with a one week break when she would have Herceptin administered at home.  It was a positive meeting; Dr C wasn’t giving up and neither was Mum.


Whole brain radiotherapy is shit. Without being a targeted treatment the entire brain is nuked which although takes on the pesky cancer cells, also causes inflammation throughout the brain which brings with it a variety of scary symptoms. These get you wondering what might be down to the treatment itself and what might be caused by tumors. Mum slept entire days, waking only when we brought her food and became increasingly confused. Mr Mason, who is ever the optimist (it’s good to have one around) was hopeful that by one-week post treatment Mum would begin to feel better. In reality the effects peaked just after the 2-week mark with Mum mostly unable to communicate, feed herself or walk up the stairs. We were reassured and supported by some brilliant staff from the local hospice, her GP and Macmillan. After a slight tweak to Mum’s meds she started to perk up a bit.

With Mum feeling a little more like herself again it was time to tackle her hair. Radiotherapy to the brain also causes hair loss and although Mum had tried to reduce the impact of this by avoiding brushing her hair, after 2 weeks her hair was still falling out and what remained was looking (as Mr Mason affectionately called it) ‘a bit Trumpy’. With nobody apart from Trump himself wanting to look even remotely Trumpy, she asked me to shave her head so I got the clippers out and gave her a very short new do.


The great jumble of words has been one of the most frustrating things for Mum given that she has always been an articulate woman with a prolific talent for writing. On occasion her words come out with great clarity whilst at other times they are completely garbled. It gets interesting (and confusing) when Mum uses synonyms or words that rhyme with the word she wants to use and we play detective, desperate to understand what she wants to communicate to us. Occasionally the jumbles are entertaining in a ‘this situation seems incredibly bleak but that was still pretty funny’ kind of way. We had a terrific visit from Mum’s friends, Ms Marsden & Ms Howard who cheered Mum on as she psyched herself up to go to hospital for her first lot of chemo. On the arduous trip down the stairs with Mr Mason and myself supporting Mum, she stopped and began apologizing. Mr Mason not understanding why she had stopped or was apologizing encouraged her on when Mum said ‘No! I was trying not to walk into Hans Franz’ <translation: Fran’s hands> Mr Mason looked at me and with a gleam in his eye asked ‘Is that your German cousin by any chance?’ As it turned out we would need all the good humor we could muster as after many hours in hospital, Mum was refused treatment on the grounds that her platelets were too low. Thanks, radiotherapy, you utter bastard.

The days that followed were not pleasant. The trip out really took its toll on Mum and the decline was steep. Reality blurred with fiction and with all the confusion, expressing herself was incredibly difficult. Throughout everything she has been pain free which is a blessing and has said that she trusts us and is not frightened since we are there to guide her. We received the go ahead to increase Mum’s steroid dose in the hope that it might work on any residual inflammation around the tumors and relieve some of Mum’s symptoms. On Wednesday of this week we are due to go to Lincoln to see the oncologist to review the plan of action.  With so many twists and turns to the story so far we are not sure if Mum will be feeling well enough to go but if not then Mr Mason and either myself or Mr Mason Jr will go and speak to Dr C on her behalf.

In spite of the worrying situation this month we have managed to enjoy:


  • Sitting together under the apple tree in the sunshine
  • Hundreds of smiles, cuddles and first giggles with Master Safaie
  • Going to the beach to eat an ice-cream and letting the dogs run about
  • Having lunch in the garden with the Fungs and Mrs Ooi
  • Sitting on the bed together watching crap TV
  • Taking a trip to Spilsby with Mrs Carslake and eating delicious cake
  • Spending time with Mr Safaie during his quick visit over from Bangkok
  • Chatting with Mrs Lavoll about old and new times
  • Mr Giffin’s beautiful flowers and his usual sparkling wit
  • Being entertained by the inappropriate but incredibly funny comedy stylings of Ms Marsden and Ms Howard
  • Reminiscing with Mrs Shaya about how Mum kicked arse at a meeting with an MP during her days at Bliss
  • And many lovely messages from caring friends and family


Although Mum isn’t able to use her phone or computer at the moment, she understands everything and very much enjoys it when I read out messages from people. If there’s anything you’d like me to pass onto Mum, please leave it in the comments and I’ll read it out to her. I’ll update again soon on the Mason household happenings.



(AKA: Mrs Safaie Jr)


Night night to the Ovaltinies

I think I’ve mentioned before that our lives have resembled a poorly put-together soap opera with twists and turns, pathos and downright “You couldn’t make it up” sections. I have been speaking to my Dad quite a bit lately. He phoned me to tell me he was having blood tests and these showed he had prostate cancer. It was difficult talking on the phone because my voice can be almost non-existent some days and Dad was a little hard of hearing so the calls could be frustrating for both of us but it was nice to hear what he was doing and for him to ask about my family. He went into hospital at one point with suspected pneumonia and then came home for a short while. He was frustrated because he had pains in his leg and couldn’t breathe properly and Dad was someone who walked a lot. He said if only his leg didn’t hurt and he could breathe properly there was nothing wrong with him. Sadly he was taken back into hospital again and diagnosed with pulmonary fibrosis. Mr Mason and I started making plans to visit when we heard from my brother that Dad wasn’t expected to  last the month and that he had MRSA.  I spoke to Dad’s nurse to ask if they were barrier nursing him and she confirmed this but also told me Dad was an MRSA carrier.Mr Mason and I spent two or three days talking to medical staff as to whether I could go or not. My consultant was worried, particularly because I am on active treatment but said he would not stop me seeing my Dad but that I should be prepared to have a spell in hospital afterwards, even if I took all the sensible precautions.


It’s taken me from May until now to try and complete this one blog entry. We decided to go on the Monday and, as things often are, he died on the Saturday afternoon before we could get there. I genuinely cannot remember who gave me the news but I knew from what he’d said on the phone that he didn’t want to hang around long and he was with family to the end. I just don’t feel like going into the following weeks as they seemed more painful than they need to have been, families being what they are. I’ve been taking a long time to finish this one piece of writing, still unsatisfied with it but glad it’s off the table so I can genuinely move on to better and more important themes.

My dad could be a funny man, still singing songs he and his friends made up around 80 years ago and with which I could still have joined in. Night night, dad.

An old recording from last summer

Rooting around in my bedside drawer, I come across my voice recorder and wonder whether a) it works b) what is on it? c) can I get it set up with my computer or will it send me into a spiral of rage and incompetence?

I get thus far and now have to try and put it on my blog page. For those of you who are a whizz at the computer, you’d beter go and do something else for a while lest it send you into an apopletíc fit. In between seeing to the animals and trying to stay awake, I manage to work it out and, of course, it costs more money. But then I think that might be a good thing. The peripheral neuropathy is getting progressively worse and sometimes I find it incredibly hard to type which, for someone who could type quite fast without looking, is obviously frustrating. My handwriting looks like someone else’s entirely, all scrawly and horrible so that’s not going to help.

Now, bear in mind this is my very first recording and, as we’re at the Dragon Boat Festival in Boston, it’s quite noisy for the first few minutes. But bear with it. Hopefully you will hear my husky tones giving you a little update of our day. The content also brought me up short as I speak about 2 friends, one of whom  is no longer with us and the other, well, let’s just say she’s had Hobson’s Choice and Mr Mason and I think and speak about her very often. The recording is so bad you probably won’t be able to hear who I’m talking about but I promise the quality of recording will get better.

I hope this works for you! It works for me in preview, even though the quality is very poor. Any feedback will be welcome.


A bird in the hand…

I have started the process to make my head space a bit better. This includes 2 sessions at the hospice where I melt down to the extent where I break down so far I cannot breathe and make a horrendous noise trying to force air into my lungs.I consume large quantities of paper handkerchiefs and then can’t find anywhere to put them other than in the hand of the nurse. She takes them without a word or grimace. We decide on a few groups I can attend, one of which is called Words & Pictures because she couldn’t think of anything else to call it. It sounds like a nursery class but I gamely go along, because it might be good and I generally get a good driver to chat to. The car service drivers are usually in their 70s and have a sense of humour and a long list of anecdotes which I like very much. There have been a spate of signs put up recently in red and white, saying ER and looking very official but no explanation. Apparently they are Escape Routes should we get flooded. Another driver took a different view and thought they were something to do with terrorist attacks. I query whether the escape routes are for the general population or the terrorists. The penny drops and we laugh.

Words & Pictures proves entertaining, too. There are two men who are wheeled in and who seem to have dementia and two ladies in their late sixties. I am made a cup of coffee by a lady who was once a client and I used to train for when I ran my own training business. She remembers me and it seems a surreal experience. We play games with words and pictures, as promised in the title, and it’s actually quite good fun. Then we are set homework, to write a poem about something that’s really important to us. I’m not sure how some of the group members will manage but they’re all lovely, smiley and twinkly. After the session I have my first hand massage which is so relaxing and finishes off the session beautifully.

We still have so many visitors to the house; some to do with Brenda, some to do with me, some are for Mr Mason and I and some are for Mr Mason alone. I can’t remember which visitor it is but I know Brenda, thankfully, wasn’t there. The woman sat in the sitting room and was loving Lark who was loving her back and obviously decided she deserved to see one of her jewels. Lark’s jewels are the things she buries in her crate, hides in the baskets of clean washing or buries in the garden. The woman merited one of her highest jewels. one from the garden. Mr Mason and I are in the kitchen making tea and so forth when we hear a cry “Your dog has just put a dead bird in my lap!” Amazingly, she does not have a fit or crawl behind the sofa but when Lark sees we approach with the intention of removing her jewel, Lark snatches it back and tries to bury it in her crate in the hope we won’t see it. Ha! Sometimes we are smarter than a dog and the small bird, presumably killed by Freya, is removed and given a swift burial in the garden recycling bin. Lark sulks for approximately 10 seconds and then is loving the visitor again.

Our second bird story involves Jan, our cleaning lady who has has a few shocks with the dogs in the house (remember the time Lark ate the conservatory blinds when Jan was in charge?). Mr Mason and I had gone to see Brenda and when we got back, Jan was quite twitchy. “We’ve got a bit of a problem” she said and then proceded to tell us that she had heard a noise in the big sitting roon and thought there was someone in there. The layout of the house means that the thick walls stop sound carrying. From upstairs, you can’t make someone downstairs hear you (or so Mr Mason tells me).  We cautiously opened the door to see chaos – china and pottery thrown about the  place and 2 enormous crows in the room. One was still trying to crash through the windows and the other was lying on the ground, dead. We closed the door wondering how on earth we were going to get the live bird out. I had visions of being attacked if I tried to move the dead bird – Hitchcock all over again. The bottom windows don’t close and repeated battering of the top windows, even when open, had resulted in one dead crow. Of course, at this point our trusty ex-SAS gardener arrives and immediately takes control of the situation.  He opens the front doors (which are double), stations Mr Mason at the bottom of the stairs so that the remaining bird won’t fly upstairs and shoos it out the front doors which is does as though trained for this moment. Mr Mason and the gardener set about cleaning up all traces of crow and another bird goes into the recycling bin. I bet the cats were kicking themselves for not ambushing birds trapped in their own house. The chimney breast gets stuffed with paper as far as it can and we hope we have no more visitors of that kind. Unless they get so far down, make a nest on the cardboard and then die of starvation…Hmm. I don’t think there’s an answer to this except to get some roofers to put cowls over the chimneypots.

You may have noticed that it’s been an age since I posted. Writing is one of the things I enjoy doing so it’s a shame I don’t get more of it done but one thing that prevents me is tiredness. You may relate to this. You’re sitting on tube after work or in bed after a long day and think you’ll just get a book out and have a look and before you know it, your eyes are closing and you’re breathing evenly and deeply, well on the way to sleep. It might sound strange but when I wake up, I’m well on my way to sleep. I spend quite a lot of the day trying to stay away. The oncologist says this is because I haven’t had a break from chemotherapy for nearly 2 years and it’s using up my reserves of energy. But I have noticed that I spend more days in bed these days – usually one or two – and the other days I have to go out, get some fresh air, walk around a bit, anything but lie in bed although it’s calling to be even now. Sometimes I’m writing and find my eyes are shut and my hands are still. but I can’t live my life asleep. So we go walking in the woods, trawl through antique shops and the 2 fabulous department stores nearby – Oldrids & D0wn Town and Eve and Ranshawe. The former sounds much more exciting than it is. The Down Town part is in an industrial estate on the fringes of the town and sells the lighting and obligatory furniture. I once went up to a desk to compliment them on a member of staff who had been exceptionally helpful and the two women behind the desk held up their handbags to ward off the evil spirits they thought I was bringing. The other department store, Eve and Ranshawe featured on a Mary Portas series on how to make your shop increase takings and how to find out which member of staff was really mucking the whole thing up by being a cow. Job done. Cow not seen since. My average waking day is around 6 to 8 hours although I do count resting hours in bed as sleeping, mostly because I can’t get comfortable downstairs and will definitely be asleep by 4, waking several hours later for a late supper. I’m hoping this is just a phase and that I’ll recover enough strength if I rest as much as possible, boring though it is.

So that’s the contorted and convoluted version of the last few weeks. I’ve left out loads, some deliberately and some by accident but I aim to write the next blog sooner. Night  night. Yawn……zzzzzzzzzzzzzzzzz


A really bad novella

If you’ve slogged your way through the blog from the beginning or so, you will know that there are many things which have happened to us. What, in a tv series or book, would be held up as poor drama – over exaggerated and melodramatic at best, has really happened to us. The initial cancer, the secondary cancer diagnosed a year after finishing my last drug, Herceptin, moving house and going to Thailand despite reservations of my oncology team, managing to get the whole family together for our first Christmas in the new house and then the inconvenient  and tragic death of my father-in-law, just as he had decided to sell up and move to the same village as us, leaving us with my mother-in-law who has Dementia worse than we had even imagined. The next dramatic episode is provided by my father who telephones to tell us he has prostate cancer. Given that we rarely speak, it is momentous news on all fronts. He sounds frail and frightened, my mother having died a few years ago and he having had the benefit of good health for most of his 88 years. Every time we seem to get on our emotional feet, something comes along to knock us down.

This time, I feel trampled down into the mud, not just because of this last piece of news but because of the cumulative crap which has been thrown at us over the last 4 years. I go to my Reiki appointment at the Hospice and just talking to the Reiki practitioner, I break down and I can’t stop. Nose bleed, the full works. It all comes pouring out and I realise as I speak that I need help and am amazed I haven’t asked for it before. It’s like I’ve been blind and deaf to what’s been going on in my head and heart and, were I a friend, I would have been beating myself about the head for being so stupid (in a nice way, of course). There are lots of suggestions that I might take up but this time I am single-minded in what I want and refuse anything but those things that really appeal. So we make plans for the following week and I leave feeling I have achieved something. On arrival home, I explain to Mr Mason that I am broken and I need help to get back on an even track. He looks just a notch down from distraught until I explain what I need and how I am going to get it. Today I’m tearful, tomorrow I’ll be smiling and joking and it can’t go on. I am wearing myself out psychologically and emotionally and not really able to enjoy the health I have at the moment. I feel much better now I have confessed to the relevant people just how awful I feel and they have taken me seriously and come up with an immediate plan to help me. It’s such a relief. Next I go on line and make an appointment to see my GP so he can go through my meds and see whether we should be tweaking, adding or subtracting. My pain isn’t really under control and the Hospice staff say this is unreasonable so should be the first thing to get under control. So that’s done.

The next day I feel much better. On Friday we go to see the oncologist and I explain to him how I’ve been feeling and he tells me to do things I like, go on holiday, dance, do whatever gives me pleasure and to really live my life. I like him even more. He’s not saying “Get it done before you snuff it” but just enjoy your life and although that makes me cry, it’s a good sort of tearfulness. I tell him I would like to see him dance but he demurs.

I’m not claiming I’m going to be a new me. I’m just going to concentrate on myself a bit more (as Mr Mason has been telling me for ages). The bad novella with all the overly dramatic bits, formerly known as My Life has taken its toll and I need to re-group and set myself up properly again. Going to bed at 4pm every day has to stop. Pain has to stop. Exhaustion has to stop. Tearfulness has to stop and melodrama has to stop. That’s it. I’m signing off with one of my favourite tracks and thinking of Les in Brentford (have you seen him lately?)


Living without sleep

Someone asked me recently whether we have settled into our new home and area. I found I didn’t really know what to say so said a lot of “um”s and “mmmmm”s because it’s such a difficult question to answer. Have we settled in? Before our recent bereavement, I would have said yes. We knew where to go for what, had dates in our diaries for local auctions and had started to know the locals. Then, of course, having dared to relax into a light spot of complacency, Dad, bless him, snuffed it and our world became new, confusing and extremely demanding, a likely parallel to how Mum feels.

At present, Mum is having  respite at a local care home which seems to tick all the boxes. It doesn’t smell of wee and cabbage, staff address the residents by their first name and there are some nice cuddles going on. Tempers of staff are amazingly reigned in when the grumpy Mrs H slams the plate of potted meat sandwiches on the table saying loudly that she’s not going to eat these. She agrees she would like sardines on toast which they produce without accidentally dropping it on her head and she then sits there for 5 minutes mashing the fish into the toast until it’s a right mess. “I can’t eat this muck” she shouts and patiently, oh, so patiently, a carer comes to check what she would like for her tea. Toast is agreed, made and delivered. No jam. Apparently it’s the work of the devil. There is a cat on the first floor that day and she aims the end of her stick at it repeatedly. Luckily it is faster and smarter. On Valentine’s Day the staff put on a pantomime for the residents. We arrive as it has just finished and I see a sign saying ‘Fawlty Towers’ over the servery hatch. There is a lot of noise with women crying and some keening, just making primeval noises. Mum sees us and rushes over saying “This is my son and he’s come to take me home”. She has some white powder over her trousers which we later find out is flour and she accidentally got in the way when it was being thrown. She is profoundly disturbed by the pantomime as are many of the residents and I suspect it won’t be happening again. But the staff give their all in trying to entertain them and to make it a good, comfortable place to be with activities, rather than just a group of old people sitting around a tv set (whether it’s on or off). So Mum is settled as she can be.

During the first few weeks when she lived with us, I found myself not only physically exhausted but not even thinking about cancer. It was all about wee, obsessions about combs and handkerchiefs, how to put a cup down on a table the right way, buying her a whole new wardrobe as she came to us like Orphan Annie with clothes of varying sizes, very few of them fitting and many of them having seen better days. We talked endlessly about food she might like and if I disappeared to my office, there was a little voice calling “Shelley” as she wanted company 24/7. It’s all so understandable. Losing a husband of 70 years, being moved from one part of the country to another, having no friends or relatives nearby. One thing she hasn’t worried about is money, fortunately.

But this shift away from cancer was very strange. It’s like my heart can only hold so much pain at a time. I knew in the back of my mind that I was over-tired (a lovely phrase which I have never understood until I experienced it) and that my pain had increased but the most pressing issues were not getting into arguments with Mum, no matter what she said or how she contradicted me. Once she was in bed, it was like a dam bursting and all I could do was crawl into bed and with sleep coming instantaneously. The sort of sleep Mr Mason has so often enjoyed – head hitting the pillow and into the Land of Nod he tumbles. Now Mum is in respite, I feel I am still catching up on rest and  easily sleeping for 12 hours a night but my mind is all over the place. Like at the beginning of primary cancer, I don’t know where I am again. I’ve found myself noticing a tightness in my chest and abdomen, the sort that predicts a fit of screaming to release tension. I’d be ace at that generic wailing music so many dramas use these days. It can be used for science fiction, films about the Far East, historical fiction. It’s one of our family sayings “Here is the generic wailing music again” and “Fresh start”, mostly used in soap operas. Every week someone has a fresh start. Maybe that’s what I’m missing.

But I’m digressing. I’m feeling stuck again. A few months ago I knew roughly where I was going, even though some of it wasn’t pleasant, but now, I don’t know where I am, let alone where I’m going. So the cancer feelings are creeping back in again and I don’t know what to do with them. I feel I can’t go through the deep distress again. Apart from anything else, I don’t want to go through it. I want to get back on the track I was on; the one where I was beginning to settle down, relax, take up hobbies and appreciate what I have and what’s around me. Now I feel grumpy, tired and out of sorts. I don’t want to eat; I’m genuinely not hungry or interested in food. Poor Mr Mason suggests meal after meal and none appeal. In the end, I usually go with what he wants, simply because it seems the fairest thing to do. For someone with a whole bookcase full of cookery books and an interest in all sorts of food, it feels like another cruel punishment I have to endure – and one Mr Mason endures, too. The only benefit is that I am losing weight slowly and gradually. And as for writing, something I love doing, it holds no interest and seems like another chore, especially when my eyes can barely focus on the screen as they are so tired.

It’s common for women after breast cancer to have Post Traumatic Stress Disorder. I suspect this is it, yet again, brought on by another stressful event. It’s hard to haul yourself out of the big black hole time after time when energy is sapped and overwhelming tirednes is the first thing I experience every morning when I wake. So I suppose I’m not settled yet as I’m struggling again to attain an equilibrium which is tolerable.  It will come but it’s taking a bloody long time.

Living with a toddler

It feels like living with a toddler sometimes. Yes, I’m talking about Mum. I am truly exhausted, especially on days when Mr Mason is engaged elsewhere doing things about funerals and documents that need filing. Today, I get up at 7am with a clear list of things I want to achieve. I go down and clear up the kitchen, empty the dishwasher (yes, it’s working again!!) and put the things away. Then the oil man arrives with several litres of oil to make sure we don’t run out. I make him a cup of coffee. I have discovered that a lot of people who work outdoors like oil men and window cleaners rarely seem to be offered a hot drink, especially in this weather. He is grateful but half way through filling the tank has to move as there is a tractor who wants to get by. He disconnects and goes back to the lorry to discover the tractor has done a very nifty three-point turn and has gone up the hill behind us. The oil man re-connects and tells me he is also going that way so he’ll probably block the tractor somewhere else on his route. That’s country life. No shouting, no gesturing or hooting. Just quiet acceptance.

I let the animals out and then feed them. They are in high spirits and clearly don’t really feel like spending much time weeing on the frozen grass so they’re back in in no time and gobbling down their food. I put the kettle on again and then the phone rings. It’s the GP surgery to say the blood tests Mum had done earlier in the week have gone walk about so could we go in and get some more done? She also needs a urine test. We co-ordinate diaries and I put the kettle back on. Once I’ve made her a cup of tea, I take a biscuit from the big tin and make my way to the annexe, leaving the dogs in the main house. The biscuits have been put back in their plastic tray ever since Mum knocked them over in her mania to have them put in a place just-so. She has been telling Mr Mason that if you don’t eat biscuits, they go bad. We think this is a subtle hint that she wants a biscuit, even though she is perfectly welcome to help herself.

She’s in a good mood this morning and we have a chat about this and that. She has forgotten about Dad again, who he is, what he looks like, where Mr Mason has gone and why but she rolls with the punches and I get her out of bed, put her dressing gown and coat on and take her into the main house until the carers come. When I get into the house I can hear Lark doing her best “I’ve been totally abandoned” impression interspersed with short renditions of the song of her people, some of which sound suspiciously like God Save the Queen.  I give Mum a puzzle book to keep her occupied while I put a load of washing on. She came to us with very few clothes as she was used to wearing just summer dresses and cardigans inside the house so I’ve been buying warm clothes and replacing bras which were ludicrous sizes and hung like elastic hula hoops around her thin chest. There are more phone calls – finally one from our Social Services key worker (whatever she does). She seemed to think a call would be enough but I suggested instead of talking on the phone, she comes over and sees for herself what our situation is like and what kind of support we might need. It’s a novel concept but she goes with it and agrees to come the next day. I speak to the financial advisor about the sensitivity of my pension company who will only consider not taxing my pension if I can persuade someone to attest to the fact that I will be dead by the end of the year.

The Waitrose delivery arrives which means the conservatory is littered with individual items as they don’t do bags for houses unless we buy them every week which I resent. I have to hurry to get it all put away because the hairdresser is coming, a lovely young lady called Abbie. Right at the part where I put the last things away, she arrives and we get Mum upstairs. She asks questions about the landlord and does he know she’s there? She’s in showing off mode as she says “You’ve got more boxes in there that we’ve got in our garage! You need to tidy up”.

Abbie asks Mum again about the style she wants and when her hair is washed, checks with me about how much should be cut off. There is quite a lot of curl left in it so she suggests she just cuts and sets her hair this time and perms it next time. We all agree. Mum thinks our bathroom is Abbie’s hair salon. Gavin, our ex-SAS Macmillan gardener and all-round-carer arrives to have a chat to see if I am OK and, as he has had experience of his own mother having dementia, can give me some useful tips. Then Abbie has finished and asks me to come and view the finished product. Mum’s hair looks really lovely. A slightly more modern style and less Queen-like. We bring her downstairs and Gavin gives her his hairdressing joke which is about his wife saying she’s going to the hairdresser and when she gets back he says “Oh, it was closed then?” He is a bit of a dinosaur in some respects but a decent and kind man. He and Abbie both leave at which point Mum starts bewailing her hair, over and over again. “What will I do with it?” She asks at least 20 times if she has any hairspray which I confirm she does in her bedroom. The more tired she becomes, the more questions come and there doesn’t seem a minute to do anything because no sooner than you have fulfilled one request, another one pops up. It is exhausting, mentally and physically.

On this particular night, the carers don’t arrive until ten past eight which is very tiring for both of us. As soon as Mum is in bed, I go to bed, too, in pain, topping myself up with morphine and falling fast asleep.

The toddler-like behaviour is showing off when people arrive, telling tales, refusing food on the basis of “I don’t like it”. Have you tried it? “No, I don’t like it”. Picking silly arguments, pretending bad things have happened like one of the dogs has bitten her, saying NO! just for the hell of it.

Other behaviour is more upsetting. Today we discuss the funeral. Over the last couple of weeks we’ve been asked about people who died many years ago and why they haven’t got in touch. “I’m worried about Mark Mason” she says, referring to her son. Mr Mason points out he is her son. “Oh”, she says, processing a difficult piece of information. Sometimes she acts and refers to Mr Mason as though he is her husband. She talks affectionately about her grandchildren very often and particularly wants to speak to Mrs Safaie. Each time we tell her she is pregnant, there is a genuine burst of joy. But the worst times are when she worries about Dad. She hasn’t heard from him. Have we heard from him? We explain each time that he died, that it was a peaceful death and that she was with him. There are never any tears. Today we explain again that he is dead and then go through the whole funeral service, including photographs I have printed out. I sit on the sofa next to her and I show her the rough copy of the order of service, telling her about the music and all the readings. I cry as I go through it. We discuss the music, we talk about who will be speaking, which photographs will go where. I stand up and cross the room to sit with my laptop to answer emails. No sooner have I go there than she asks the same question again about where George is. It must be all of 30 seconds. This time I leave it to Mr Mason to explain it again. I suspect this will go on for some time, particularly about Dad and the funeral although she finds it hard to find her way through a set of 3 inter-connecting rooms.

On the positive side, Mum is much stronger physically. She can get herself out of a chair without help, walk unaided (although she does put on a bit of a frailty show if she thinks it’s necessary) and get herself dressed and undressed if the carers are late. She has accepted the urinary incontinence problem and now wears a pad which is a huge relief for all. Like the rest of us, she is being bombarded by appointments, social workers, occupational therapists, doctors, nurses – all things which are needed but which take up so much time. It’s like being back at the beginning of my cancer diagnosis. And where we go, Mum also goes at the moment until we’ve managed to sort out sitters and encouraged her to join in one or two of the local lunch clubs. I haven’t been doing my speech therapy exercises and I’ve been trying to continue small pieces of work. On Saturday I am booked to record a group of ladies tell their stories of breast cancer for an organisation called EPOC. The night before, I think this is a bad idea. I am not in the right place, I feel crap, I feel tearful and tired. I wake on Saturday and decide this is exactly what I need. To go and talk about cancer as a change of subject, to forget about Dad’s death and Mum’s dementia and deafness. We start filming and the other women confess they feel scared, heart rates soaring, trembling etc. I sit in front of the camera and feel not a tremble. I feel totally in control, happy, content, in a world I feel comfortable in. Now it’s the dementia world which scares me. I don’t understand it or the way the system works. I feel out of my depth. At the recording, Mr Mason and Mum accompany me and are found a comfortable room to sit in with drinks and lunch. I feel I have an entourage – a slightly strange one, admittedly.

This week I am going to speak to one of the local Commissioning Groups and we have arranged for Gavin to come and sit with Mum while we go. With her sitting in the meeting, I can just hear her saying “I used to work at Boots so I know what goes on, what they do”. And thus would be the end of my speaking career.

Dad 25.12.16