Hi Colin and you too Chris,
Wishing you both a smooth procedure with as few side-effects and setbacks as possible.:-)
You have done very well to get Colin to this stage Vicki, just one more push and you will soon have him home and on the road to recovery and hopefully a long remission.:-D
Good luck and best wishes for all on the 17th.8-)
Dai.
Hi Gill,
Your waffles always hit the spot… unerringly.8-)
Thank you for always being just you, please keep in touch… here and especially with Min, Sarah, Tina etc.,
You are in my thoughts constantly… I admired Stephen greatly, he was my role model… and you were and remain my friend.8-) 🙂
Warmest regards:-)
Dai.
My Dear Rachel.
Such devastating news… I was certain that Paul, of all people would be strong enough to get into a full and long remission… you must feel terribly cheated… but this is the nature of MM. IMHO the most important reading in the bloods report is your Neutrophils… the governor of your immune system and if they fall too low and you have an infection, there is nothing to fight back with… I imagine that this is what happened in Paul's case.:-|
Please accept my condolences for you and your family and my deep regards for Paul… he was such a deeply supportive member of this board always amongst the first to respond with a positive, friendly message to those with worries and concerns… :-)… he will be sorely missed as a fellow MM'er and a friend.:-(
Dai.
Hi Everyone?
Still alive and kicking, with a little care from my right leg, which is currently carrying a slightly complicated DVT.:-P
This last month has been a bit of a nightmare… with my C: Diff back and winning the fight for a short while. In short my consultants plan (after finding out that 6 weeks on my referral to the Gastro-Intestinal Clinic had not been passed on) was to ?surprise? the C:Diff by starting a series a short course anti-biotics before it kicked in? i.e. wait 5 or 6 days after a course and then start again, symptoms or no. It was decided to start the course on the Monday following my consult? only the bug decided to attack on the Sunday evening and I had to circle the wagons in a hurry by taking the A/B?s as soon as I realised what was occurring. I was too late and the bug bit with a vengeance.>:-(
It was a rather savage attack and I was completely brought to a low point with rampant and untimely diarrhoea which caused an ?accident? on the Tuesday night. I took off my Jim-Jam bottoms and over-reached whilst trying to get into my slippers? I fell forward, onto my left knee, followed by head-butting the door closed and ending up on the floor behind the door blocking entry? so Janet was unable to get in to help me up and I was slightly concussed and lacking the strength to get up. Something had to give so I pulled my right leg underneath me and my grabbing the towel rail in one hand and the sink in the other I forced my right leg to push me three-quarters up until I could grab the sink and step back to allow Janet access to help me.:-0
I had a bump on my left leg and another with an abrasion on my head? the right leg push up caused the back of my leg to feel stiff, tender and sore? where the strength to push myself came from I really don?t know? I do know that I could not normally have used it so in a month of Sundays.:-S
I spent the Wednesday in bed feeling shaken up and more than a bit stirred. By Thursday my right leg had swollen dramatically? a twin to the DVT in my left leg a year before, caused by the strain of forcing the whole of my body up on an already lack of bone marrow weakened leg. By the evening I was feeling a shortness of breath and so given my history of a pulmonary embolism and the previous DVT I called in to the City Hospital Bleep Holder. The ward suggested either A&E or calling out the after hours Doctor? so I went with the latter who turned up within an hour and gave me a thorough examination including measuring my legs. He concurred with me that it was almost inevitably a DVT and told me he wanted me in hospital within the hour and anti-coagulant treatment started as soon as possible thereafter to avoid the real chance of a pulmonary embolism. He had a computer in his car and he would process the calls straight away and we were to expect an ambulance within the hour, he left at 10.15pm? ho hum. The ambulance arrived 2.5 hours later and I arrived at the Queen?s Medical Centre Assessment Unit (not my usual City Hospital) at 2.40am.:-|
I was left on my own on a trolley in a semi-darkened reception area until 3.15am until a nurse turned up and took me to the D57 ?Fast Track? ward? into a private side-room (because of my infectious C:Diff). She helped me off the trolley and I sat on the edge of the bed, wished me luck and disappeared. Janet has a macular problem (not degenerative but it makes driving at night near on impossible) so for the very first time I entered hospital alone. My bags were on a chair, I couldn?t find the nurse call, (it had fallen down behind a cupboard) and my leg made it very painful to move around. Although it was a side-room it wasn?t ensuite? but fortunately the toilet/shower was just outside my room. I was utterly exhausted and in considerable pain and discomfort? so I managed to get into bed. I fell asleep waiting for a nurse and the inevitable vitals etc., but I was awoken at 8am by an orderly asking what I wanted for breakfast and the first medic was the ?poo nurse? doing her various ward rounds of isolated patients. When I told her that I had been in and unattended since 3.30am she took control and I was the inducted properly. She obviously complained on my behalf because 2 doctors turned up within 30 minutes, examined me thoroughly and carried a complete health survey while apologising profusely.:-) :-0
The ?Fastrack? ward ships you in, makes an assessment and then moves you to an appropriate ward for your condition. It was chock-a-block full to overflowing, short staffed and the staff on duty had no chance of keeping up with so many different ailments and conditions? but even so the level of care was abysmal, with miserable faces everywhere and basic demands for treatment ignored and my medicines ?not in stock?, including my Revlimid?… even though the pharmacist had been down and made up a comprehensive list of medicines and times? and called back in to tell me that everything was now on the ward!!! I told the nurses this but they just looked at their notes, shook their heads and repeated ?not in stock?. So I missed 2 days of Rev. and several other meds:'-(
On Saturday I was taken for a scan, confirming the DVT, which has encroached into my stomach. A consultant came to see me and explained that they might carry out a minor surgery to install a filter to stop the clots from reaching my lungs? but so far no further news, a fortnight on. I was taken for a chest x-ray in the afternoon and then moved across the other side of the hospital to the specialist Gastro-Intestinal Ward? so perhaps the DVT was a blessing in disguise.;-)
Sunday was a rest day but I was seen by the Gastro-Intestinal consultant (and several acolytes) early on Monday. I had been started back on150ml of Clexane (from my maintenance dose of 40ml) on Friday night, so that was the DVT covered for now. The consultant took me off ?Flagyl? (for my C:Diff) and started me on a 10 week, decreasing doses, course of Vancomycin, a stronger, more effective medicine (with far less side-effects) for C:Difficule? 2 weeks on and it is, so far so good? after 16 weeks of misery it seems to be under complete control? and with proper diagnosis and referral this could have been the case 10 weeks ago.:-/
I am now home and my leg is recovering slowly but surely. I went in for my morning suit fitting today and managed well, including getting my wedding outfit and shoes on without too much difficulty (I don?t know that Janet would agree with that statement). By next Saturday I should be in a fit state to walk Becky down the relatively short aisle in the registry office.:-D
I have felt as ill as at any time since diagnosis this past 6 weeks but I have been fortunate enough to go through the mill and come out fighting my way to wellness and relative fitness.8-)
I have checked in here several times but Stephen?s passing and Gill's loss has hit me hard? following on from the similar blow of losing Bridget, contemporaries and friends both and I felt both bereft and slightly broken on both occasions. The C: Diff didn?t help, feeling so wretched all the time, and the declaration from my consultant that my previous course of Revlimid would be my last? because my yo-yoing light chains had yo?yoed up instead of down, from a figure of 230 to 330, seemed to make my own demise suddenly very real and very close. 🙁
I prepared a letter for my consultants, arguing that the presence of the C:Diff over such a long period would surely have an effect of the ability of the Revlimid to be properly absorbed into my system (along with several other salient points) and went into my consult a fortnight ago prepared for a fight (if they stuck to their guns I was going to refuse further treatment, feeling strongly that I was right).
My consultant agreed with me from the outset, deflating my righteousness. My latest light-chain reading had yo-yoed up again? but only from 330 to 343? and that from a HGB reading of 7.8 (I had 2 bags of blood 2 days later? and another 2 bags this last Wednesday? so I should be glowing when I walk Becky down the aisle). It was agreed to carry on with the Rev and Dex, until or unless the figures rose significantly (a long way up from 343).8-)
So here I am, back in the fold and feeling inordinately better than of late and feeling positive? on Cycle 8 of Rev & Dex and with the hope of my light-chains falling now that the Rev has a fighting chance of being absorbed into my system more effectively? time will tell. 😀 😎 🙂
Regards to all.:-)
Dai.
PS. Tom, I don't know who is conversing with you but it's not Janet. I suspect it is either one of my sisters, Sian or Angela… not that it matters… I am grateful they were giving you updates while I was down in the doldrums. 😎
Hi Gill,
Keep us updated when you feel strong enough… I think you know that all your friends on this board have one eye looking for your name on a thread… and our hearts set ready to help in any way we can.:-)
Much love and respect.
Dai.
Hi Sarah & Henry,
I know I replied to this thread a few days ago but a few of my posts have gone AWOL… but never mind, good news is worth repeating… take it easy and take it slow…. but take it all the same. 😎
Use the first few months for mental and spiritual growth… the body will follow in its own good time… don't push, don't rush and you will be fine and dandy.:-)
Regards
Dai.
Hi David,
Just to bump up Eve's inquiry… how the hell are you?:-D 😎 🙂
Dai.
Hi Eve,
I appreciate your concerns about Slim's progress but he is recovering from something like the equivalent of major brain or heart surgery… the SCT completely destroyed his immune system…his stem cells were given back and have to do two things:
1. Regraft onto his bones/bone marrow and start rebuilding the blocks of his immune system
2. After the redraft is complete the stem cells have to mature… and that takes months, not weeks…. it could take up to a year before he feels as 'normal' as he is going to get.
With some people it can be 4 to 6 months before they start feeling sub-normal with others up to a year… it depends how hard you push your body… and pushing is NOT a good thing. Slim needs to take it easy and take it slow, especially if his body is telling him to slow down.
You are not being ungrateful, just impatient. He will get there okay, just think of what he has been through on the last 18 months to get to this point.
Take it easy but take it… slowly.
Much love and regards8-)
Dai.
HI tina,
At the very start of my MM journey I was diagnosed with secondary bone cancer, primary unknown… with another 14 months before the correct diagnosis of MM. THE CT Scan carried out at my small, local hospital showed a reasonably large tumour that had crushed a couple of vertebrae and was in imminent danger of cutting into my spinal cord… so I was rushed 75 miles (from CT results to being in bed at Swansea took 4.5 hours) to the nearest clinical hospital. I was assessed, given copious amounts of morphine and the next day (a Saturday) I was given a double dose of RT… by the head of Nuclear Medicine with a full compliment of staff which I was told was a rarity indeed.
Sunday I was left to rest followed by single doses of RT Monday to Friday inclusive. On Friday afternoon I was visited by 2 physiotherapists who bade me to leave my bed and walk. I stared at them with pity bordering on disdain.. I had not walked more than a few pain filled steps with either a Zimmer or a wall for support in over 10 weeks.
But I managed to swing my legs out of the bed and onto the floor and with the aid of a Zimmer I was almost overwhelmed by my ability to walk. Such was the success that by the ti,e Janet and a couple of close friends arrived for visiting time at 3pm I was waiting at the lift… unaided, with the Zimmer hidden around the corner.
Apart from feeling a bit washed out and some shakiness in my legs I had no pain (thank God I remain free from that pain which is/was the worst I have ever known) and no nausea or other side-effect apart from a slight burning sensation at the point of entry at the back but nothing of note.
I wish you the same or even less side-effects.
Dai.
I too am mainly bald (evidence to your left) and when my hair started to fall out Janet gave me a No.1 which, on a man,, looks quite neat and tidy. I stayed like that until my post SCT recovery and when it grew back it was the same as my teenage years, thick curls up and out a la Art Garfunkel… at one point I thought MM had found a cure for baldness… but it was short lived, although if I leave it my hair still curls.;-)
Saying that I cannot imagine anything worse for a woman than thin brittle hair… I hope those affected find a product to help thicken and provide volume.:-)
Dai.
Hi Cathy,
This is great news… especially the report from the Doctor re: the kidneys regenerating their function on their own, that really would be the icing on the cake… but I have known a couple of people where this has been the case.8-)
I look forward to hearing about you getting Ivan home for the road to recovery… hopefully with fully functioning kidneys and steady but sure building of strength and vigour.
Regards:-)
Dai.
Hey Mari & Steve
Just a note to wish you all the best for the SCT process… I hope it is as smooth as possible with few side-effects… and that you will both be home within 10 to 12 days and ready for the road to recovery.:-)
You have both been here before so you know what to expect… and I hope your expectations are high.8-)
Regards
Dai.
HI Gill,
I am a Quaker by conviction… not by faith or upbringing but because I found them during a year on strike as a miner during the 1984-85 dispute, where the Quakers opened their Meeting Houses as relief centres… not because they believed in the rights or wrongs of the dispute but because there was human suffering involved and they believed it was their duty to help that suffering . I had reason to visit a local Meeting House and became enthralled. I read their literature and finally decided to attend a meeting. There were a few people present to meet and greet newcomers, a simple handshake, an enquiry to ascertain if it was my first meeting, a smile, a leaflet to explain the order of the meeting and directions to the meeting hall with the direction to sit where ever I wanted.
I have attended many, many meetings the length and breadth of Britain… some are big, brand new, bright and shining, others smaller, older but well ordered and quite a few which are fairly small, ancient and atmospheric. But nearly all of them have a common theme. Either decreasing circles or rectangles that face into a central table that usually contains a few books, including the Bible, some Quaker writings and the ubiquitous vases of fresh cut flowers… many meeting houses have large windows that look out onto a variety of ordered or wild-flowered gardens.
At the appointed time of the meeting (say 10am) the room descends into quiet and the attendees settle their minds into 'Centring' their spirits into 'That of God'. Most Quakers are Christians or Christian based but there are a goodly few who are Humanists.. and another good sum who don't have any faith but are there to seek… even if they are not at all sure what they are seeking for. Just like me on that first visit.
I, like I imagine most others, usually take between five to ten minutes to settle… trying to find my moral centre while being interrupted by football, finances, family problems and what's for dinner… but eventually I settle and become aware not only of my own peace but of a deep and almost beautiful silence of the room.
There are no prayers, no set hymns or music… just silent contemplation. Well, almost. If an individual feels moved they will stand and deliver or officially 'Minister. Sometimes they may read a short passage from the Bible or other writings (once a woman read a few scenes from the Beano which had a profound effect on her and left the rest of us with broad and lasting smiles). More often than not the contributions are about every day things… problems, sorrows or joys that have entered their lives and they felt moved to share. Usually there may be two or three of these 'Ministries'… any more and the meeting would be consider 'Busy'. Occasionally the meeting would remain silent throughout and that is called a 'Gathered Meeting'. I have only been present at two Gathered meetings in twenty-seven years.
Very often you can feel a movement of irritation when someone stands to minister. It can take you by surprise to hear a voice start to speak when your head is bowed and you are lost in your thoughts, it is akin to being rudely awakened from a deep sleep… with some people that is a literal truth and I admit to several such occasions myself.
But Quakers recognise that however banal, intellectual, uninteresting or plain boring the ministry may be to some there is almost every time where that same ministry 'Speaks' to someone or even quite a few in the room. Those occasions are historically called 'Speaking To My Condition' and I have been a minister on a few occasions and a recipient on many occasions. Being a recipient when you least expect it can be a powerful and extremely uplifting form of communication… or perhaps I should say communion in the literal sense.
At the end of the hour or shortly before if the meeting starts to gain a more prosaic consciousness, a couple of 'Elders' will turn to each other and shake hands… at which point everyone will turn to their neighbours, as many as they can reach, and shake hands in turn… and the meeting is over. The Secretary will then read out a few business points and then the attendees move into a side room where tea, coffee, biscuits and cakes are consumed amongst the most garrulous set of beings you are ever likely to meet. Occasionally there is a 'Shared Lunch' with either a guest speaker or musicians or even a poet etc., which I loved beyond words… the spirit of the meeting extended for another hour or so but set to words and often music and laughter, always laughter.
I don't know why I was moved to tell you this… perhaps it may speak to you…. but I suspect it may have been for me.
Either way it was told with love throughout.:-)
Much love to you and all on this board.
Dai.
HI Gail,
I am so very sorry that you have lost the love of your life so quickly to this damed disease. While we are all made very aware that MM is a terminal disease most sufferers get some sort of relief and remissions from treatment… but very occasionally there are cases where treatments fail to stop the disease.
Howard sounds like a fine husband and a fine human being… he did not deserve either the disease or its end.
I am way down the line of MM and fighting to survive as long as I can,,, but with MM you never know. I am sorry that Howard never got the chance to put up a fight.
Please check in frequently tomorrow… I know that thire are a few good people who have been through your experience who will be able to offer caring and sound advices that may well be of help.
I wish you naught but well, please don't despair. You have friends here.
Dai.
😉 😎 😀 🙂
With knobs on.
Dai.
