suzeanna

Hi Everybody, Sue was cremated on the 26th and I was pleasantly surprised to get a phone call today asking if it was convenient for her ashes to be returned today. So now she is home. Her daughter Mandy is going to be taking some with her to Greece in two weeks time so that they can be placed on Koukounaries beach on Skiathos and for the Aegean sea to wash her away as she asked. Some will be sprinkled around her beloved Cherry tree in the garden. I may make a journey up to Roos where she spent the early part of her life and where her father is buried somewhere in the Roos churchyard. Sue's son, Mark came up with his eldest son, Aidan, and we went out with Mandy and her husband to have a meal. We toasted Sue's memory and there were a few tears, but all in all a happy occasion (though I am sure I heard Sue's voice saying " That duck is overcooked, go on complain. The price they are charging for it you want it right!") So now I am very close to closing the story of Sue's life. Just a few more lines to write, then I will keep walking carrying her memory with me all my days.. Peace and Love to you all, I hope you enjoy the Bank Holiday weekend and that the weather is kind to us all!

Hello everyone, In some respects its seems a very long time since I last posted in here, in other ways hardly any time at all. I was advised today that Sue has now been cremated, please raise a glass/cup/mug of your beverage of choice to her memory. I will be sentimental here. Until we meet again in the Light my beloved Suzie Loved you yesterday Love You still always have always will.

Thank You Jazz, that made me laugh, I had forgotten about Albert's Fry Ups.

Me again, I wrote this for my Facebook page, but thought it would be appreciated here too, please excuse the reference to an old work colleague! It is over. My beloved wife left the world at 21.20 Monday evening. She slipped into unconsciousness late Saturday evening and her passing from this world was quiet and without pain. Her given names were Andrea Susan but she never used the name Andrea, to most people she was “Sue” Though on a memorable occasion she was greeted by a raucous crowd of work colleagues with a roar of Mrs.Phil! She loved that, and the boozy hug given to her by one Gavin Teal! To her children Mandy and Mark she was “Mum”, to her Grandchildren Aidan, Abby and Jamie she was “Nana Sue” but to me for longer than I remember and no matter how old we had become she was always “Suzie” She wasn’t religious but liked the idea that Terry Pratchett put forward in one of his Discworld books that what came after life was what you believed in. In which case my Suzie would not have walked through the Valley of the Shadow of Death, she would have ridden hard and fast through it into the Light… and she would have been astride a great white horse… named Binkey! “Go Not Gently into the Night” is a motto Sue kept since her initial diagnosis eight years ago. She made up her mind what she wanted to do with her life and stuck to it, sometimes against what the medics had advised. She gained respect from the clinical staff and Consultants and over the last three weeks this has been repeated several times with them saying “I have read your wife’s notes, she is a strong, determined and intelligent woman” This had also been said to her at various times too, though her usual answer was “You mean that I have got Bloody Awkward Woman written down somewhere” If my wife has left any legacy to this world other than to her family it will be that maybe she has made some of the medical world realise that the patient does have a voice and that it should be listened to. That they need to make the patient aware that they have a choice and give the alternatives, and once that choice has been made it should be respected. I now find it hard to believe that I have been married for nearly twenty nine years and that I had known her for several years before that, it seems to have gone by so fast. I remember everything as if it was yesterday. At one time in my life I felt that I would never meet somebody, and although I had loved before it was my Suzie who was the “One” She was my world, and although Paloma Faith sang it with a different meaning, it is true that “Only Love Can Hurt Like This” I never knew the true meaning of being Broken Hearted until now. In keeping with her wishes there will not be a funeral service, simply a cremation with no one in attendance. However there are two songs that she felt appropriate and maybe if you have time you will listen to them. “Into the West” by Annie Lennox “Somewhere” by Runrig I would like to add the following love song for my Lady Love I would like to Thank all those that have given me their support over the years I cannot start to tell how much it has meant to me. I will also like to thank the staff in the EMU and Elmton ward at the Chesterfield Royal and also all at the Ashgate Hospice, where Sue was treated with care and compassion for the last few weeks of her life. I will end this post with the words that were written on my last birthday present to her: Loved you yesterday Love You still always have always will.

Hello All, It is my very sad duty to have to tell you that my darling wife, Sue, who you all knew as Suzeanna, but who I have only ever know as Suzie passed away from this world at 21.20 Monday evening. The end was peaceful and pain free, which is the best any of us can ask for. She started to deteriorate on Saturday and I got a call at 5.45 in the morning and went over. She was unconscious most of the day but to our surprise opened her eyes just after six in the evening and asked for a drink of water and was very lucid. Sunday there was a certain level of awareness but her breathing had become more laboured. Today was not an easy day to sit with her her breathing was harsh and noisy, fortunately there was no level of awareness from her. I got a call from the hospice as I was walking Candy that again her breathing had changed and that the end was very near. I got home and drove to the Hospice, only to be met by the nurse who told me she has died five minutes earlier. Knowing my sue she did that on purpose so that i would be there when she went! In keeping with Sue's wishes there will not be a funeral, she asked that she has Direct Disposal, and all she asked was that people would raise a glass in her memory the day of her cremation. I will let you know when this is as soon as it is arranged. I would like to thank you all for your care and support for Sue I was appreciated by Sue and it is very much appreciated by me. She might not have met any of you, but to her you were all friends. Thank you again from the bottom of my heart for the friendship you all gave her. Philip

Hi all, thought I would pop in to say hello as I thought you would be wishing Sue a Happy Birthday. I will be going in to see her in about an hour and I will pass on your messages. She is being well looked after at the Ashgate Hospice, however there is a slow deterioration in her condition. She has days where she is lucid and other days where she doesn't remember if people have been in to visit. Her concept of time is skewed as well, which makes for interesting conversations! Especially as she thought yesterday was the sixth and was upset there were no cards. Hoping today is a good one, thank you all for the love, care and positive thoughts you are sending to Sue. Philip

Hello everybody, I know from having read your replies to my posts that you wish to know what is happening with Sue. I was speaking to a doctor yesterday (on Sue's phone) and he advise me that a sepsis alert had been given yesterday morning. She had a high heart rate, high temperature and low blood pressure. They had given her a drug to reduce the heart rate and AB's as well and this had stabilised her. He then spoke to me about Sue's wish to stop all treatment other than pain relief. I told him that Sue had made her wishes clear to me in the past that if ever she got to the point where she couldn't take any more she would choose this option. I asked the Dr. if it was as I thought that it was close to zero that Sue would ever function again as she did prior to this latest episode, and that if she was likely to stay as she was until something terminal happened it was her choice to stop treatment now and that her children and I support her choice. Mandy got involved with the hospital and Sue is now in a peaceful side room on her own and is likely to stay there unless they get an influx of cases that need to be isolated. She has also been given unlimited visiting rights. Her son, Mark, drove up from the south coast yesterday afternoon and saw her as he got here. He has seen her today and will again tomorrow to say his goodbyes before he goes home. Sue had her last IV antibiotics last night, and I spoke to another Dr. today regarding what happens now. In terms of palliative care they will keep her on morphine and if at any point she become distressed they will add some form of sedation. He said that if a bed was available if she wished she could be moved to the local hospice which is less "clinical" and more peaceful that a hospital environment. That will be up to Sue to decide what she wants to do. I am so sorry to have to tell you that Sue is now entering the final part of her life, the Dr. advised there is no way of telling how long this will last. From my heart I hope it is sooner rather than later, though it will break me. I think this will be the last update until I have the duty to tell you she has passed from this world into the whatever lies beyond. All I can say is, and this for anybody who read Terry Pratchett, there had better be a white horse called Binky! Now we wait..

Jazz, she has got her data turned on, she has had 6Gb of data each month for the three years i have worked at BT. I think this is the first time she has ever used it. Hospital WiFi is notoriously bad.

Hello all, I haven't posted anything over the last day as there hasn't been a lot of change in her condition. They have found that she has a staphyloccus aureus infection and have changed her AB's to target this. They did try to get her to stand today but she was unable to hold her head up, so they used a hoist to get her into a chair to try and strengthen her core muscles. She was also have trouble breathing this morning and they gave her oxygen which seems to have helped, and when i saw her this afternoon she had been taken off it. She was asleep for the first fifteen minutes I was there, and she said it was a wonderful surprise to wake and see me sat there. They have upped her morphine dose to make her comfortable. I spoke to one of the hospital admins about the care she would receive when she comes home, but this is on the basis that she has some mobility. However I hate to have to say this but at present I cannot see Sue ever being able to be mobile enough again to come home. She was given an ultrasound of her heart today, and also had a discussion with a nurse about DNR or as they now call it DNAR. She was asked in the event of a heart attack would she wish to for them to attempt resuscitation, she gave an emphatic NO! Her daughter Mandy has been given special dispensation to see her for 15 of the 60 minutes visiting time she has each day. We are also going to try and see if we can get her son, Mark, in at some point. He has to travel up from the south coast, but he hasn't seen his mum in nearly sixteen months we want to see if we can get him in to see Sue. I will update you if anything significant happens, but at the moment any changes in Sue are very gradual.

Yes thank you, I have some support but for me today the hardest part was telling her children Mandy and Mark.

Hey Everybody, I have an update but I am sorry to say it is not very encouraging. I called this morning and arranged to talk to one of the doctors on the team caring for Sue. So I went in at 12.45 and spoke to a very friendly, and at my request straight talking doctor. The main problem is the infection at C5, the fracture caused a bleed and the infection latched onto this, and has now caused an abcess which is causing all the loss of motor function. They feel the infection got in by the skin "mets" on her neck and left collar bone which had previously opened and were quite raw, although Sue had covered them and they did seem to be healing in terms of the skin being unbroken. The antibiotics she is currently on have had very little effect on the infection and a response would have been within 48 hours, and now it is 96. They have now changed her antibiotics though to a new one. However I was advised that realistically Sue is "at the beginning of the end". They have had to stop the chemo she was having as this suppresses the body's immune response. Of course this will just mean the cancer will keep progressing. Life expectancy is probably at the most six months. When everything has been put into place to care for her Sue will come home and have carers in. She is to be given six weeks of IV antibiotics and then six weeks of orally taken. She will not be allowed to stand as this could cause catastrophic damage to her neck. So she will be bed bound for the rest of her life. Sue is aware of all this, she had this conversation with the consultant prior to mine with his junior. I am sorry this hasn't had a more positive tone, but Sue asked me to make you all aware of things, I know we have only met Owl some time back but she considers you on here to be her friends, and she has always been grateful for the moral support you have given her. I will of course keep you updated if anything changes.

Hello All, Philip here with the latest instalment of "The Trials and Tribulations of Suzeanna" Are you sitting comfortably?.. Then I will begin... I got to see Sue yesterday afternoon and spent my alloted hour with her and she was as well as she could be, she has problems with holding things and when lifting her hands she has a noticeable tremor. much to her chagrin she has to use a sip cup so that she does throw whatever she is drinking all over herself and the ward. She is currently on antibiotics and morphine ( you will need to remember this detail for later in the story!) It wasn't easy to leave at the end of the hour but at least I got to see here and will do again this afternoon. Sometime after I got home she called me. The results of the MRI with contrast scans had come back. The area that is affected is, and I quote, "a mass of infection" I understand that as is normal the scans were passed to Weston Park and the Northern General for their consideration. Early evening yesterday Sue had a call from a Mr. Bailey, who wanted a face to face conversation with her. He was very honest with her and said although his senior consultant had said he wouldn't perform a surgical operation, he was willing to give it a try if after a chat she was willing. "OK" she said, lets talk. So it was arranged for her to go over to the NG and I got a call about 21.30 to say she had arrived. I got a call this morning at 06.30 and if any of you had been looking towards Chesterfield about five minutes later you would have seen a mushroom cloud to rival those when they tested the H Bomb. Anybody who knows me will tell you I have a calm placid personality, but this morning I was incandescent with rage. The only pain relief she had been given was two paracetamol and some codeine. She asked why she wasn't being given Oramorph. "erm, it's not listed" "What about my antibiotics?" "ermm, it's not listed. So Northern General had a patient in, intelligent and lucid, who has been in extreme pain and has a massive infection and they leave her without the two medications she really needs. A five minute call to the Elmton ward at the Royal would have sorted it, but apparently that would have taken some thought! I called the Royal later on when I knew senior staff would be about. I spoke to a very polite doctor and told him what had happened, explained that my wife had been fifteen hours without suitable pain relief and the antibiotics needed to fight the "mass of infection", I then very politely asked him to contact the NG and to "kick their arses" Call from Sue a bit later Oramorph and antibiotics had been given. She spoke to Mr. Bailey about the op but has declined in that it has a moderate chance of making things worse. So Sue has asked to be taken back to the Royal and I got a call an hour or so ago to say she is back in her bed there. I have written a letter of complaint about the NG's lack of Duty of Care to their patient. One bit of good news, she can now mover her right leg a bit, whereas yesterday she could only wiggle her toes! That's all for now.... an update will follow when I know more..

Philip here, the last couple of days have been "interesting" Sue spend most of Sunday in the EMU at the Chesterfield Royal where she had an MRI scan. This showed that there was a small fracture of one of her vertebrae (C5 or C7) in her upper neck. There was also a cluster of "something" at this point too. Conclusion being either blood from the fracture or an infection. This was pressing on the nerves causing all the problems. There is another ongoing infection and to top it she now has thrush in her mouth!. She was on IV antibiotics yesterday Late last night she was moved onto a ward and today had another MRI scan, this time with contrast fluid, to see if they could determine what the cluster was. Currently waiting on Weston Park to come back with what is going on there. She had a chat with a senior consultant today and was told that there is a procedure that can be used, they would knock her out and use a needle to suck out whatever is there. The only problem here is that it is very risky putting a needle into bone that has been subjected to radiotherapy. It can shatter the bone, with obvious consequences. After many differing answers, visitors are allowed, but it has to be the same person and they are allocated an hour a a specific time, so at 15.00 today I got to see Sue. Took her some bits and pieces in that she wanted. I told her i had posted here and that you all had her in your thoughts. That is how things currently, I expect tomorrow will give more information from Weston Park. I will try to keep you all updated as and when I can. Philip

Hello everybody, Philip here, As you may have guessed my darling wife is back in hospital. She was taken off to hospital at 05.00 this morning after spending the night on the sofa. She was very weak in her arms and she had no motor function in her right leg. I managed to get a bag ready for her so this time she has her phone, Fire, reading glasses and a charger with her! She has called this morning and has given the news she can now wiggle the toes on her right foot! I will keep you all updated. Happy Birthday Eve, from both of us! xx Just looked back on posts and seen Owl has posted earlier.

Well I can safely say that was the worst night of my life, never known pain like itI I hope its the radio working as if not something is very very wrong Cant even touch type my right hand wont work. Woe woe thrice woe

Liked my hair cut , that makes a change. Jazz, I have soups, porridge, custard etc. but I have been given a throat spray and mouthwash which both are painkillers, plus some liquid thing that numbs the whole of your gullet so I might have no appetite, but I should be able to swallow without feeling as if I'm swallowing razor blades. They've warned me the effects from the rt will last at least 7 to 9 days and get worse, and then of course on Friday, the dreaded chemo. You might not hear much from me for a bit.

Having been warned of the effects of the chemo on my already thinning hair, I took a chance and rang one of the salons locally and have a 9am appointment for a dry cut. I usually hate it when people cut my hair so be prepared for moans tomorrow. Last one of 10 radiotherapy treatments today, at last. Sadly the effects from that last for quite a while, bad ones as well as good and I'm really struggling to swallow anything. Might account for the lost 7 lbs.

I went to collect my drugs from the hospital at lunch time, came home with a huge bag. Forgot to mention, yesterday's clinic they weigh and measure you and I seem to have shed an inch in height somewhere! I thought one of us was changing and it wasn't him. The list of warnings on these things are scary..if that happens ring the hospital. If this happens, rings an ambulance at once. Just have to hope for the best. Hope your stuff turns up ok Jazz. Any worrying signs with Wispa, Owl? Off out again for the last r/t of this week, two next week and that's it.

Hope Wispa passes it through with no bother. I've got the drops now, so fingers crossed it soon clears. Saw the oncologist at 6 for a 4.30 appointment, apparently they were having a nightmare day! He doesn't want me to start the chemo until I've finished the radiotherapy as one will make me feel ill anyway and both will be not good at all. He's dispensing the tablets but leaving it to me when I feel I'm capable of taking them. Said if next week ok, if not leave it another but don't leave it too long as he has to balance between making me feel really awful and not doing enough soon enough. I did ask about time scale and he said he'd be a rich man if he could say that but not over a year. Oh well, there's probably a lot of people with less than that who don't know it. I did ask about whether I should be riding a mobility scooter as going over the bumps could make my neck go and he said bad idea but on the other hand, you could trip on the stairs and that could do it. Right, scooter stays. What's life without a risk or two? Mental note, make sure I've matching undies at all time.

Hi all. Spoke to a clinical nurse whatsit at my surgery late afternoon yesterday and got in to see her this morning about my left eye. She called in a doctor..unheard of! German guy, very nice. Gave my eye a good examination and concluded its the start of conjunctivitis and also a cataract due to the dexamathazone steroid the've put me on..great , give you one thing, cause another! He prescribed eye drops and gel, went to get it this afternoon from the chemist and got home to find only gel. Phoned them up..oh yes, we don't keep that in we've ordered it, tomorrow afternoon. Well, thanks very much for mentioning it at the time! One great result from GP, dismal fail from chemist. Off to Weston Park again in a bit, then three more appointments and that's it for now. Hopefully that's it permanently, but I thought that last May and December too.

Owl, that's awful! Is nothing and nowhere safe these days? I'm glad I can't walk Candy any more, I'd be terrified of someone grabbing her. Philip walks with an alarm in the evenings as it is. So glad your friend got the dog back unharmed.

Not religious, but Happy Easter to those that are. Went over to my daughter for a couple of hours at lunch time, her neighbours and family were out in their front garden and one of them remarked how alike we are...like sisters! My daughter was not impressed. Said it might be flattering for me but not for her.

Glad his mouth is sorted, it must have really hurt. Do take care Jazz, for heaven's sake! My hair is now an inch shorter thanks to me chopping the sides and Philip doing the back and I've managed to wash it without removing the marks they've made on my neck to line up the r/t machine! I do however now have a sore left eye, possibly due to the dexamethasone as eye infections are one of the side effects, and teethmarks in the bathroom door due to the effects of the morphine! (i won't go into that!).

Got to Weston Park for my 9.30 scan, which happened at 10! Then a long wait to see the consultant, she was lovely and we had a good chat. Ended up talking about the Marvel etc films as she has two teenage boys, she's seen the lot. She said I could have one big treatment, but there was a serious risk in that of spinal cord damage. She said ten treatments would be better, although there was still a slight risk it would be much less. No contest really, so I said ok ten. They came up with a time plan so I had the first session today, but I had to wait for a machine until1.30. Philip picked me up at 2 and we were home by 2.45 so rather a long day. It will be quicker on future treatments as the planning scan was the one which took the time. She's warned me it will increase the pain, but I can up my morphine if so, and it will probably affect my swallowing. The treatments this time will slightly overlap the previous ones so the side effects will be worse. I'm really looking forward to this..erk! I did brighten up the department though, I was wearing flowery multi coloured summer trousers and a bright pink top, got lots of approving looks (well, that or pity!)

Lovely weather yesterday and where was I all day and night? Stuck in Chesterfield Royal Hospital! Sent there by an emergency nurse at Weston Park sheffield for a scan ended up with an ECG, a battery of blood tests, a covid test and then up to the EMU to wait for a time for a scan which didn't happen until 4.15. Staggered out of the MRI 45 minutes later, then back to a ward to wait for the result. Long story short, the vertebrae which was pinching a nerve is pinching more. They wanted to send the screens to Weston Park to find out what if anything could be done and I told them, several of them several times, that they couldn't anything different there! Seems I was wrong, someone just phoned and said more radiotherapy! They've had a meeting and said they can do rt higher up than last time, but the problem is it will overlap previous areas which will lead to more side effects. She's getting in touch with the rt team to see what and when, they need to do a planning scan first to see if it can be done at all, then it will be either one session, as before or..gulp..ten. She said would I be happy to come in as an inpatient if it's 10 and I said absolutely not, so they would arrange transport. No way can Philip keep asking for time off, especially as hes just had a change of manager.