What’s going on?

I am a 56 year old woman living with secondary cancer. I was diagnosed with Inflammatory Breast Cancer in March 2012, that rarest and most aggressive of breast cancers. Often mis-diagnosed, it presents itself with redness and swelling, a change in the consistency of the breast rather than a single lump. My GP examined me and said it was not cancer but offered me the opportunity to have it checked out at the breast clinic. Fortunately I took this up and so we knew what we were handling with quite early on. My treatment regime was tough – 3 sessions of FEC, 3 of Docetaxel, a radical mastectomy with full node clearance and 25 fractions of radiotherapy together with a further 3 sessions of Docetaxel and a year of Herceptin. Despite Professor Palmieri’s best efforts, I was diagnosed with secondary cancer in the lungs in June 2014.

I am on the fourth chemotherapy since diagnosis and it seems to show some effects. A positive CT scan which showed a reduction in lesions was tempered by a prognosis of 12 to 18 months, a lot less than I was hoping for.

At the point of the secondary diagnosis, my husband, Mark, and I decided to carry out an ambition we have held for some years and that was to move to Lincolnshire and have a quieter, more rural life. Despite the shock and incredulity of my oncology team, we managed it and moved from West London to a small village in Lincolnshire in March 2015.

I am lucky enough to have Mark, who I have known since 1978 and who has stood by me through each medical crisis. I also have 2 adult children – Francesca, who is a practising Birth Doula in Bangkok where she lives with her husband and Oliver, who lives in London and does something important and complicated with computers. They have all been solidly behind me providing love, support, hugs and inappropriate jokes. I love them enormously and dread the day we will all be parted.

Since January 2016, we have my mother-in-law living with us after my wonderful father-in-law died. She has dementia, is very deaf but so far refuses hearing aids and has turned our world upside down. We are just starting to come to terms with what we are dealing with and some of it ain’t pretty. So please forgive the swearing, complaining and insensitivity. Life has just changed beyond what we expected – yet again.

As for this, this is my blog. It’s about living with secondary cancer and all that entails. Please read and I hope you will find it interesting and helpful or at least, entertaining. All the bad jokes are mine.

Shelley x

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.

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 lifeaftermum.com 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.

Fran

AKA: Mrs Safaie Jr

xxx

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.

Fran

(AKA: Mrs Safaie Jr)

xxx

 

 

 

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.

 

Fran

(AKA: Mrs Safaie Jr)

 

xxx

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.

 

Fran

(AKA: Mrs Safaie Jr)

xxxxx

Lark’s Diary XIV

Things have been a bit scary and there have been lots of changes here at home which Archie and I don’t really understand. I am so glad Archie is with me as he’s a good brother except when he puts my head in his mouth but it’s just his way of showing me that he’s in charge. It does make my ears wet, though, and it’s a bit tickly. Firstly, Mum has been in bed for quite a long time because she is very tired and has been hot, too. I know she’s been sad because her Dad died and she cried a bit so I climbed onto the bed and gave her a long cuddle which she likes. She’s been on the telephone a lot of the time talking to people called “Dickheads”. I’m not sure what they are but apparently they’re not very nice people and it’s something to do with ‘insurance’. Another really annoying thing is that pigeons have decided to live in the virginia creeper at the front of the house, right between the windows of the front bedroom and the dressing room and they are always squawking and making noise but we can’t get at them as they are too high up. Another bad thing that has happened is the white and orange cat which belongs to Grandma. She can’t have him where she lives now so he lives with us, usually under the bed although I have seen him trying to climb out the windows to catch the pigeon. Maybe I should help him a bit with a gentle shove. He also shouts all the time and he is the greediest cat in the world. He keeps trying to hit me but he avoids Big Archie. Mum and Mark have been behaving strangely too,with big bags of clothes and we didn’t understand what was going on. One weekend we went on a really big walk until my legs nearly dropped off. There was a big ditch and because we were thirsty, I jumped in and then found out it was very deep and it went right up to my shoulders so I was covered in mud but it felt nice and cool.  Mum said I looked like a vagabond which might be something like a Dickhead but she didn’t sound so cross when she said it. Really Mum doesn’t get properly cross with us unless we do something really bad which is nice because I think it shows she loves us. By the time we got home we were nice and dry.

Anyway, the next day the gardener came over to see us and put our beds in the back of the car along with some toys and one of Mum’s cardigans and he took us away without Mum or Mark. Archie and I were scared although we like the gardener but Archie remembered when he had gone to stay with Uncle Phil once and Mum and Mark came back for us. He took us to something called ‘Kennels’ where there were other d0gs staying without their owners and I’m a bit ashamed to say I cried a lot and kept everybody awake for the first two days, singing the song of my people, but Archie told me that Mum and Mark would never leave us on our own and that we might make some new friends to play with. The gardener came to see us every couple of days and brought us Bonio and pig’s ears which kept us happy. Then one day he came and packed up our toys and beds and put us in the car and TOOK US HOME! It was the best day of my life when I saw the gates to the house and Archie was very excited, too. We played in the garden with Mark for a while and then he let us in the house to see Mum who was in bed and very tired. She told me she had been a long, long way away in a plane (that’s one of those things that buzz about the sky although I don’t know how they keep up in the air) to see Francesca who is Mum’s real baby. She said that Francesca had had a baby of her own although I can’t see how because Francesca only looks big enough to have a kitten. It’s all very exciting and I’m looking forward to sniffing the baby and giving it a big kiss (so long as Mum doesn’t see me do it).

So all is well except for the tv. Mum and I watch dog programmes together sometimes but the other day I looked up and there was a big plane coming towards us and it frightened me so much I fell off the bed. I think Mum might have laughed a bit. She has asked me to put in my diary that she will be back writing very soon and sends you all lots of love and a picture of the baby.

PS I don’t think the baby is that fond of Mum yet 😦

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.

22.6.16

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?)

 

Lark’s Diary XIII

The weather has been yucky, yucky, yucky. The dam opposite the house is all brown and going very fast so I wouldn’t like to fall in, even if I was in a little boat, although I don’t know how to drive any kind of boat. Honestly, I’ve been taught no survival skills. And round the apple tree there is an absolute lake! Where does all the water come from? And the silly thing is, Archie and I have to go out to hurry up so we just add more water, making it worse. Mum really doesn’t like me going in the house. And the other day, I went out in the garden and there was more of that white stuff coming down. I was in the nude and freeeeezing so when I came indoors, I went straight up to Mum’s bed and threw myself under the duvet. She wasn’t very pleased when she saw the muddy footprints on the sheets and she said “I wonder what Jan will make of these?” I expect Jan thought I had thrown myself into a warm bed as anyone else would have done but Mum was muttering things about hammeroyds, whatever they are, and saying it was good the marks weren’t on her side of the bed. Sometimes I really don’t understand her.

I seem to have grown out of lots of my clothes and sometimes they’re a squeeze to get over my tummy. Archie has been wearing his dinner jacket suit but he’s lost the bowtie so he looks like one of those men who go to Church and talk a lot.Yesterday we went out for the day to a new beach but Mum wasn’t happy, even though she had something nice to eat at lunchtime because she saved some for me which was a delicious piece of ham. Archie told me something bad had happened 4 years ago  which is why she is often poorly now and that it makes her very sad every year, even though she doesn’t want to be.  I told him she needs to run about a bit more and I’d even let her borrow my squeaky hedgehog which is one of my favourite toys but he said that wouldn’t help and she couldn’t do the running bit anyway. He told me the best thing to do is to stand next to her and lean on her or, if she’s sitting down, stand in front of her and put my head on her lap. That was I get stroked and she is made happy. Archie is a wise dog, I think, even though I don’t understand half of what he says and he STILL puts my head in his mouth when he feels like it!

A very nice lady came to the house the other day and she was very complimentary about me and stroked me a lot so I thought I would share one of my best treasures with her. I had to go all the way to the bottom of the garden for this one as it was very special and I ran into the house and put it in her lap, expecting cries of joy and praise to be heaped upon me. Instead, she screamed “Your dog has just given me a dead bird!” so I whipped it away quickly and put it in my crate. It was very pretty but I wasn’t going to let her have it if she was just going to scream like a human and not appreciate it. Mum and Mark came in quickly, too, and Mark took it away and I never saw it again which was very sad. Usually Freya catches the birds and then, when they don’t flap around any more, she lets me have them as one of my treasures. My treasures include Jumbones, real bones, birds (when they are not taken away by silly screaming women), socks and an orange that Mum was going to eat. I thought I would surprise her with it one day when she was feeling sad as a dog giving you an orange would cheer anyone up.

The old lady hasn’t come back to the house so I’m not sure what they have done with her. I hope they didn’t take her to Dr Bum as although she was always telling me off and getting me into trouble, she was quite good at stroking when she wasn’t thinking about it. And even if they have taken her to Dr Bum, they haven’t brought her back so she can’t be one of my treasures and be buried in the garden, although that would take an awful lot of digging. I don’t know why humans make life quite so complicated. I’m not sure I’ll ever understand them as well as Archie does.