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)
Thank you Fran for continuing with your Mum’s blog. So sorry to hear what Shelley has been going through and our love is sent to her and the rest of the family. Shelley and I worked together years ago in the Civil Service and her sense of humour kept us going in the office especially when the general public weren’t that civil with us! And now years later we are both “Nana” to beautiful grandchildren so I know what absolute joy your little lad brings to your Mum and Dad’s lives.
Thank you so much for writing this, Fran, I have been thinking about Shelley a lot! You are definitely doing her proud!
Shelley, I don’t really know you, but I did almost meet up with you twice! Still thinking of you lots, and praying for you, too (not sure you want to hear that, but that’s how I roll….). You are a true inspiration, and you have been having a lot of ‘input’ into my life: you’ve made me laugh and cry and cross – and now utterly inadequate that I can’t do anything to give back.
I am wishing you lots of more laughter about German cousins and other words and other things. I am wishing you to continue without pain, and with peace and I wish the same peace to all your family and close friends.
Much much love from Kent.
Firstly, Fran, I have to tell you that your writing is excellent, on a par with big mama Mason.
Secondly, Shelley, I want to send you so much love and strength to face these treatments. And because the world needs stupendous people like you, I hope it gives you more time to be with and enjoy your gorgeous (and clearly talented) family.
You’re in my thoughts (almost typed “in my tights” – now that’s almost as good as Hans Franz. 😂) x
What a great job you’ve done in continuing the blog. Thank you. I’m sure all Shelley’s readers appreciate it as much as I do and you’ve managed to include the humour, strength and pathos we’ve grown to know well. I’m crying inside to hear of the horrendous time Shelley is having but love seeing you all together and to see Shelley smiling. Send her my love and a hug to you, Ollie and Mark. Karen xx
Beautiful postFran, wishing all of you the very best! Love, Elham
You write beautifully too. Please give your mum all my love and best wishes, we nearly met in Lincoln one day last year, from another Flat Friend. Love Sue xx
Thanks so much Fran , for writing the blog. It was really nice to see the photos of Shelly with Master Saffaie. It must be so nice having you there . Send my love and let shelly know I have a grandson reginald (Reggie) , 14 months, who love cuddles. Well not sure he does, but I do!!. Love to all the family. Ann
Thank you for a lovely post Fran and we so hope that you are comfortable Shelley and will continue to enjoy many more lovely times, German relatives, cakes and musings. You are all a lovely family and we are thinking of you and sending you all our love and thoughts and big hugs XXXX
Beautiful post, beautiful family and Shelley, just sending love and virtual Jaffa cakes. xx
Wishing all of you the very best xxx
How lovely to hear ‘Her Daughter’s Voice’ coming through Shelley’s blog. Great job, Mrs Safaie Jr – & lovely pics too!
As always, our hearts are with all of you during this particularly pants palaver and we’re sending smiles and love streaming up the motorway to sunny Lincolnshire.
Hugs and Much Love
Gill & Chris
(Don’t know if you remember me Mrs S, and was going to post a pic to jog your memory but haven’t the technical chops to manage it!! Sorry 😦 )
Dear Fran, you are certainly your wonderful mother’s daughter. Your blog is beautiful (and witty and interesting and heartbreaking). We are very much hoping we can see her this Friday – will you be there? It would be so good to meet you. I love the pictures. I want to cuddle that little boy almost as much as I want to give Shelley the biggest, gentlest hug ever. Give her our love, and tell her what a fab daughter she has got. Ruth and Philip.
Well, I have such mixed feelings reading this…thank you so much though for doing such a good job of bringing us into your world for a bit.
Please give your mum and your dad huge hugs from me….and say that my house move has been delayed which is complicating my October but I will get up if I can within the next 6 weeks or so…dad and I have messaged on facebook about it.
Just to give you some context, I worked with mum in the 1980s…it seems like an eon ago now!
Much love and my thoughts are with you all, Caroline (W-W) xxxx
Dear Shelley, glad to see young master saffaie no longer crying in your glorious company. Your Fran is a big girl now – remember 16 years ago we used to chat about our kids at Quit! Love to you, marvellous Shelley. From Olivia ( and big Millie 18, and big Flo 14, xxxxx)
Dear Shelley sending much love I think of you often with laughter and such fondness of the good times we shared in Ealing. Sending loving wishes to mr m and family at this tough time xxxxxxh