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mary smith 95 comments the post that no one wanted to read i have to tell you that mary died at the back of 7am on christmas day she started her next journey peacefully without pain or breathlessness and being lovingly cared for despite mary preparing us we are still in shock as i expect you will be the support and love she received from you all was as amazing as her care for everyone she reached the dh notification of the time of the memorial celebration will be posted here along with a link to stream it when it is arranged share this share on facebook opens in new window facebook share on x opens in new window x email a link to a friend opens in new window email share on linkedin opens in new window linkedin share on pinterest opens in new window pinterest like loading marysmith splace cancerdiary 45 finishinglineinsight december 18 2021 mary smith 118 comments well i m on the home stretch now the finishing line very much in sight nothing is quite as expected though from early on i had made my wish to die at home be known but here i am in a bed in the alexandra unit which provides palliative care and is the nearest thing we have in dumfries galloway region to hospice provision anyway the change of plans was my choice at home although they would take every possible care to have the drugs i would need when the pain became more severe i wasn t going to have someone 24 7 with the key to the locked cabinet i didn t want to behave all undignified if i couldn t get my drugs i was mentally preparing some funny stories to share with you like the woman who wanted a cleaning job but not when she was a bit busy near christmas but it s late and i need to take my breakthrough morphine dose learning the lingo which i ve delayed to get this wee post out there i ll try to remember them not that i ll be seeing my house again dirty or otherwise my son is home he came down after my weekend flight and decorated the christmas tree and made such a lovely job i realised i should have had him doing it every year i think i issued a challenge to him and his partner to a game of rummy and my sister s dog is wondering why she s never been invited on hospital visits before now patients have treats hidden all over the place wishing each and every one of you a happy festival time and many thanks for all your support and love share this share on facebook opens in new window facebook share on x opens in new window x email a link to a friend opens in new window email share on linkedin opens in new window linkedin share on pinterest opens in new window pinterest like loading marysmith splace cancerdiary44 up up away palliative care december 4 2021 mary smith 69 comments after my last post recording my decision not to go for further cancer treatment i really did intend to post an update a bit sooner than this i should have remembered the unpredictability of cancer and not made assumptions things would tick over just the same the couple of weeks before my last post were busy seeing friends doctors and the dentist another emergency broken filling i had an online consultation with the palliative consultant and she changed some of my medication i d been on a combination of codeine and paracetamol to try to suppress the constant cough and it was making me feel nauseous most of the time which rather put me off eating the consultant prescribed morphine instead both a tablet and a liquid form the tablet creates a slow release background dose to provide pain relief help the breathlessness and suppress the cough and i could take the liquid stuff when required the pain is something fairly new a difficult to describe sharp pain along my right shoulder then the weekend after friends we met in pakistan thirty years ago came to visit usually they would stay with us and we would never go to bed the same day we got up this time they booked into a hotel which although not how i wanted it to be was incredibly thoughtful i could come home in the afternoon to have a nap before meeting again in the evening but my goodness did it not make me feel horribly old to be the person who needed to nap other friends had unbeknownst to me had been plotting to arrange a flight for me in a two seater piper pup plane something i didn t know was on my bucket list wow despite the less than elegant scramble getting in and out of the aircraft it was absolutely amazing the sun shone the flight was stunning and at the risk of upsetting my friend beetley pete i think it really was awesome i am so so glad i went and it happened when it did i seriously doubt if i d manage to get in the plane now things went downhill after the weekend i thought at first it was a result of doing too much and a few days of rest would put me right again deciding to have a bit of quiet time i cancelled engagements apart from my appointment with the palliative consultant this time a face to face consultation we also cancelled our planned trip to aberdeen to visit our son at the weekend that was a good call as it was the weekend of storm arwen so travelling would have been a mistake concerned about how breathless i d become in case there were blood clots in my lungs the consultant organised a ct scan for the next day the next day and upped my morphine no blood clots to be seen which was a relief but nothing else pointed to a cause of the breathlessness in case it was a return of the pneumonitis i was put on steroids remembering how fast they took effect before i was looking forward to feeling much better after the first couple of doses over the weekend unfortunately i wasn t the gp called me on monday evening after seeing the scan results and suggested an antibiotic as there was a suggestion there could be an infection i m over half way through the course now without any improvement i had my first home visit from a macmillan nurse this week she further increased the morphine medication assuring me i am still on a very low dose we discussed the difficult topics of putting in place dnr do not resuscitate which actually isn t so difficult when you understand your heart stopped because we re all done here and breaking ribs to re start it possibly very briefly isn t a great idea i have an appointment with the consultant at the beginning of the coming week i have to say i am very impressed and very glad of the support network which has seemingly seamlessly appeared in place i m tired in a way i ve never been tired before chemotherapy made me tired radiotherapy wearied me deep in my bones but this this is something else again in the morning i make and eat my breakfast then go back to bed with a cup of tea it s stone cold when i wake up talking makes me cough a short chat on the phone leaves me breathless coughing and exhausted i m a talker this is hard i m hoping further tweaking of the meds will help to relieve some of these symptoms at least for a while i would like to do some writing there s still the goldfish blog to convert into a book and there are poems to be written and edited but it will depend on my energy levels and focus i apologise for not reading and commenting on as many of your blog posts as usual that takes stamina i will try to respond to as many comments on my blog as possible it s always been a cardinal blogging rule for me to engage but if i don t please don t be offended i m just a wee bit knackered right now the last couple of weeks haven t been easy not least getting my head round the fact the increasing amount of medication i m taking is not going to make me better but there have been some wonderful highlights which i ll enjoy remembering share this share on facebook opens in new window facebook share on x opens in new window x email a link to a friend opens in new window email share on linkedin opens in new window linkedin share on pinterest opens in new window pinterest like loading marysmith splace decision cancerupdate43 november 19 2021 mary smith 169 comments those of you who follow this blog will know i had an appointment with the oncologist immediately after my islay holiday there wasn t really anything new to hear about my cancer i d read the information on the chemotherapy drugs and their potential side effucks nausea fatigue loss of appetite and weight loss peripheral neuropathy blood clots breathlessness and a serious impact on my immune system one drug would be given every three weeks at the cancer centre the other would be a capsule taken twice a day in between the three weekly cycle the chemotherapy would be four possibly six cycles so 12 to 18 weeks of feeling rubbish not being able to go out much i d have a ct scan after the first two cycles to see what if any impact the drugs were having the treatment is in no way curative and if it is successful could extend my life by two months of course i could be the outlier who survives for a few years but it s not very likely and how would i feel during those extra eight weeks not bouncing with health that s for sure i asked how long i might have if i didn t take any treatment knowing it s not possible to give an accurate prediction and was told definitely three months and possibly as much as six months mind you this is from the person who said at the end of may i could expect two or three years i wouldn t put my money on her predictions i think i d probably made my decision when i was on islay and the week after seeing the oncologist i turned down the option of further chemotherapy it s a relief not to have to keep thinking about it weighing up the options and wondering if i m making the right decision i ll let you know how things go share this share on facebook opens in new window facebook share on x opens in new window x email a link to a friend opens in new window email share on linkedin opens in new window linkedin share on pinterest opens in new window pinterest like loading marysmith splace afghanistan friendship family november 8 2021 november 8 2021 mary smith 109 comments in my last post i said my next one would be about the discussion with the oncologist i ve changed my mind i ll put up a cancer update soon but in the meantime i want to introduce you to a special person who is part of my extended afghan family in fact i m going to let her do the introduction herself but before she does i ll fill in a bit of our shared family history i met sausan s grandfather jawad in the jaghori district of ghazni province in 1989 the year the soviets left afghanistan when he came to work as a driver for the leprosy tuberculosis ngo non government organisation for which i was joint co ordinator later he moved to an administrative role in quetta pakistan which was at the time our operational base his family joined him in quetta they were among the first visitors when my son was born i remember looking at jawad s wife as she held him and seeing the longing in her eyes i was pretty sure another addition to their growing family would be coming along jawad didn t think so i was right shahnaz jawad s daughter holding david soon after he came home from the maternity hospital 30 years ago david s birthday 21st march is also the afghan new year this embroidered cloth was a gift to him from jawad s wife on his first birthday exquisite embroidery in each corner of the cloth it became clear we had to move operations to afghanistan or risk being robbed every time we shipped medicines and supplies across the border in 1993 jawad went ahead finding a suitable building in the northern city of mazar i sharif and i followed with david daud who was then two years old the children playing together on a picnic in balkh described by marco polo as a noble and great city jawad being used as a climbing frame the noble and great city was renowned in our time for its delicious kebabs you can read about the following three years in mazar i sharif and my work teaching health volunteers in rural hazara jat or hazaristan in drunk chickens and burnt macaroni real stories of afghan women when i returned to scotland there was no facebook very few people even emailed and keeping in touch wasn t easy but we always managed taliban came to power and the family escaped to pakistan the dh david and i went to pakistan several times to meet up after taliban was pushed out temporarily as it turned out jawad and family moved back to afghanistan to kabul mustafa and his sister shahnaz won scholarships to india and we visited mustafa there regretting we didn t have enough time to visit shahnaz as well we also returned to afghanistan for an all too brief reunion time together in a recreation park near kabul when we visited in 2006 farid mustafa and david in kabul opposite the museum mustafa later did his masters in the uk his parents looked forward to seeing him graduate and we looked forward to a grand reunion over here however when the hoops the british government made his parents jump through for a visa became unsurmountable we went to bristol to be there for him mustafa s graduation day in bristol jawad s son murtaza was the first to be married and he moved to america where he and his wife soraya live in connecticut it is their daughter who adds the next link in the family chain she and i met when she visited kabul earlier this year for her aunt s wedding and we chatted on a video call after she d read my book and had some questions for me here she is i am sausan farhnaz jawad i was born in hartford connecticut usa july 2nd 2010 originally i am from afghanistan jahgori district where my father murtaza ahmadi was born my grandfather jawad ahmadi was running an international ngo lepco to treat leprosy and tuberculosis in the very remote area in central highlands of afghanistan i live in simsbury ct i have gone to afghanistan two times already kabul the capital of afghanistan is surrounded by high mountains my last visit to kabul was in may 2021 to attend the wedding of my aunt which was held in a very nice wedding hall unfortunately i could not attend the wedding of my uncle which was held on august 8th it was celebrated in kabul s famous garden bagh i babur a very old and famous garden where the mogul emperor babur one of the genghis khan s descendants is buried the reason i could not attend my uncle s wedding was because afghanistan was having trouble with the taliban and the flights were cancelled if i went to his wedding i would be stuck in afghanistan luckily my grandparents and the newlyweds left the country but sadly some of my grandparents relatives are still stuck in afghanistan my family nation is hazara this is a tribe mixed with mongol and turkish which is living in the centre of afghanistan you may be wondering why this post now since taliban once again took control of afghanistan earlier this year i ve turned down several invitations to speak in public about the situation and i ve not written about it on my blog i couldn t i was too angry and heartbroken to find a way to talk about it taliban s takeover and the plight of those desperate to leave the country were on the fro...