This topic contains 35 replies, has 18 voices, and was last updated by 
tom 12 years ago.
Just wondering if anyone has heard from Dai, I have missed him.
Ann
Hi Ann
Last I heard he still had that pesky infection but was out of hospital. Tom has been in touch with Janet so he will be able to tell us more when he finishes work
Love Jean
Hi All
Yep our Dai is going through the mill of Late I got these to inform me how he is doing 🙂
::::::::::Hello Tom, Dai is quite poorly at the moment he has some sort of stomach bug, but he also had DVT in his other leg and it has travelled to his stomach, they are considering surgery but allowed him home yesterday. Good news is his cancer is under control at the moment unfortunately the medication is quite aggressive and is causing problems in other parts of his body. Ive spoken with him this morning and he says he is feeling a lot better today., He is just hoping he will be well enough to wk his daughter down the aisle on her wedding day in 3 weeks, but he remains amazingly positive and continues to fight. Thank you for caring
Got the one above on the 2nd Oct
And this one on the 6th Oct ::::Hi Tom, yes he's still home and feeling a little better, the swelling in his leg is going down slowly but surely. He has an Appointment on Monday to discuss further treatment for MM and he's hoping he can have another cycle of Rev, so fingers crossed x
and not much since but I leave a message for him often xxx
Love Tom "onwards and Upwards"
Ps I will be away this week end due back on Monday tekin Two Grandsons to Cleethorpes for the week end.
xxx
Hi all
Funny I was wondering where Dai was. Next time you speak/email Janet or speak to Dai please pass on Colin and my best wishes. Fingers crossed he'll be able to walk his daughter down the aisle. My money's on Dai. He's a fighter!
Best wishes
Vicki and Colin x
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. 😎
Dear Dai
Well done on getting through such a rough patch. It makes my cold/cough that I'm coping with seem so trivial!
I really hope things will be on the improve for you again now.
Take care of yourself.
Love
Michele x
Hi Dai
Well as you know we have all been worried about you,this forum just did not seem the same with out you,Tom in his wisdom managed to get info on you,clever block that he is,when someone goes missing who usually post,it becomes a puzzle why they have not posted,do they need a break!!! are they ill!!! or worst still pushing up the daisies!!!!,so it is a relieve that you are still here,loosing outdoor Paul of all people was enough.
On that note it is so wrong that,we are still loosing people with infections,I am so aware of Slims Neuts and plates,its like an obsession ,always check when blood taken.
I can sympathise with your treatment,very,very wrong,but as you know Slims been there,but the wife from hell was fighting his corner,you do not make yourself popular.I know there are consultations patients and staff meetings going on at present to improve the service.so worth while complaining,staff shortages are managers responsibility,and if the patients complain it has more weight than staff complaining.So pen to paper Dai,improve that service for the next person in line.
Get yourself fit for the wedding and have a lovely time,and make sure you keep all doors open,Janet will be next in hospital at this rate,its very hard to sleep or relax when you are a carer,so make her job a bit easier.
Both of you have a wonderful time Love Eve
Hi Dai
Oh boy you have really been through the mill!! But I'm so glad to hear that you are on the mend. We all missed you here. Dai I think it might be my fault about Janet being in contact. Tom had told me what had happened to you and I made the assumption that he had been 'talking' to Janet. Sorry for any confusion.
It's really great to have you back and hope you Beky and all the family have a brilliant day next week. Looking forward to seeing photos.
Take care and welcome back
Love Jean x
Yeah, yeah, yeah so you been ill, now tell me again why you have not been posting 😉
Great to see you back Dia we all missed your posts. Keep fighting buddy.
Kindest regards – vasbyte
David
Dear Dai,
I'm so sorry about what you've been through. Sometimes we have to make very difficult decisions about how to react when our treatment in sub-optimal. When the failures are systemic ones rather than individual ones, there is even more of a dilemma. And often, we can't tell the difference between the two, because behind each promise that hasn't been kept there's an avalanche of stories about unreasonable demands being made of health professionals. And yet, systems can become more and more run down, and if people don't complain, it will just get worse. It's not all lack of money – there's bound to be mismanagement and poor decisions. It's difficult to complain when you're really ill. When I was at my lowest ebb after transplant and hooked up to three things at once I didn't drink for many hours because I couldn't lift a litre jug of water. The nurse I asked for help said I wasn't trying very hard. It turned out my lung had been punctured when the Hickmann line was put in and I was in so much pain I couldn't move( the puncture had been concealed from me). There's a lot of scope for 'misunderstandings' like that and sometimes we just have to squeal.
I am wondering whether it might be useful for you to try a three drug combo, even with something that appears to be not be particularly effective for you. The combo might work synergistically. Could you prepare a list of treatments or combos that you've heard of and ask whether any of them are on the table? Even if you're very happy with your consultant, getting a second opinion is not a vote of no confidence. It's a recognition that somewhere else something might be possible that could work for you. I have no right to say this, but maybe it's time to pull all the stops out.
Eva
Dai
Its just not right you going AWOL and not letting us know your unwell!
You must teach Janet how to use your computer in your absence or get a tablet to take to hospitals. 3g enabled of course.
Seriously though sorry to hear you have been in the war's with all the health problems in your history you would think they would keep you a bed in your favourate hospital just in case!
Get better and skip your daughter down the aisle, then tell us all about it.
Have a look at some reiki,wish I had known about it when Peter was alive, I would have had my practitioner person living on the premises.
Its got lots of benefits not least just learning your body how to truly relax, it involves no effort other than closing your eyes and just as your advise to me about the Secret is helpful I think reiki is equal to it for MY health. I have been on anti biotics for 6 months and I remembered Reiki lady who got me off them at last. You know you worth it….
Much love
Min
Thank you all, truly and deeply…
It wasn't just the illness, though that was real and bad enough to be going on with, it was also a feeling that I had hit a brick wall in my progress and general well being.
I am still hanging on where many of my contemporaries have slipped away. We had similar problems, similar prognosis and no reason to think that our journeys wouldn't have similar outcomes in terms of median life terms. But there is no rhyme or reason attached to MM and here I am…
I was told to expect a 3 to 6 year remission from my SCT whereas it failed after 10 months, with only enough Stem Cells for one go. I got into full remission (0 across the board) with Velcade but it started back after only 6 weeks (caught very early and didn't really affect me for 5 months). Revlimid and Dex are doing a job but because we waited 10 weeks trying to find enough myeloma in my urine to qualify for the worldwide Carfilzomib trial the Rev has had a harder fight on its hands with a starting point of 225 light chains, instead of the 0 in my original Rev & Dex starting point in January. (I had a place reserved on the trial but they finally called it a day and closed entries 5 days before my myeloma showed up).
The good news is that my bad luck with this second DVT got me the attention of the Gastro-Intestinal consultant at the QMC and this new Vancomycin treatment really seems to be working. So given a touch of luck on the following wind the Rev & Dex should be better able to be absorbed and both do ts job in keeping the MM uncheck while lowering the light chains at the same time.
I can honestly say that I have had no new problems with my MM since March (the start of R&D) and if the C:Difficule problem hadn't arisen (due to the powerful antibiotics given for a lung infection at the end of May) then Janet and I would have had a wonderful summer and most probably my light chains would have stayed at a low and manageable level.:-0
It seems a given that I respond well to treatment but I become vulnerable as soon as the treatment stops. So that is why I am determined to stay with Rev and Dex for as long as I can… at least until Carfilzomib (Kyprolis) gets its European/UK licence (possibly as soon as the spring.8-)
Eva has made a good point about attaching a third agent to Rev & Dex and Kyprolis seems to be the answer. I asked about this approach at my last consult (2 weeks ago) but my consultant informed me that there are no current trials available in the UK… nothing, zilch. If Rev & Dex fail then we will have to look at previous treatments rather that anything new… she was quite emphatic about that.:-(
Paul's tragic demise shows that infections are our greatest enemy, especially if our Neutrofils are low… they got Bridget in a similar fashion… in for an infection, antibiotics fail to get on top of the problem and then suddenly a drop in the Neutrofils and nothing to fight back with. 🙁
I am back to feeling very positive about my relationship with Rev & Dex… reaching the R&D stage means accepting that there are no further treatments which will culminate in a period of remission… it is a matter of staying with R&D for as long as it works… but there is a hope that the R&D treatment, along with an agent that is active in bringing Light-Chains and PP's down to an acceptable level and couldl extend the life and times of R&D beyond the current median of 30 months… perhaps way beyond??? 😎 😀
Thank you one and all once again… your support and just knowing you are there is valued more than you can know.8-)
Regards and much love.:-)
Dai.
Dai,
Reading your posts I am dumb struck! Firstly what you've been through and secondly being unattended in hospital. Thank goodness you are on the mend 🙂
Vicki and Colin x
Dear Dai
I am so glad you have at last got through what has obviously been a most horendous episode in your battle. How is it that we can see the very best AND the very worst of the NHS! You wonder if the Policy Makers really appreciate what it is like on the ground. If only we had the collective emotional energy and clout to do something about it. Sadly, we can just about find energy to fight our own day to day battles.
I know we will all be rooting for you as "The Wedding" approaches. You and Janet, as well as the rest of the family, deserve a wonderful day.
I know what you mean about feeling a sense of your own mortality. I have been feeling this lately. The death of John Blackburn, (who I have written about in the "End of Life" Section,) really hit me, as I had just got to know him, via email, this last couple of months. And I hadn't even caught up with the news about Paul. That is a blow as he was so young and previously so active. (Where was this news posted? I completely missed it.)
A friend was encouraging me yesterday to just take "a day at a time", but even with the strong faith I have, I find it hard at times. Like you and lots of others, I just crave some days where quality of life feels really good. YET, why am I grumbling?
Yes Dai, good to have you back online. Your contributions are always so special and such an encouragement.
Lots of love to you and Janet. God bless you.
Mavis x
Dear Dai,
I'm going to tell you what I might do if I were in your situation – I'm just a couple of steps behind you. I realise that everyone has a different nature and therefore different relationships with procedures and organisations.
I'd ask if there was any option of 'beefing up' the Rev, and I'd try and at least think about this now rather than later. Since every med has side effects, the extent to which you can beef something up will depend on your kidney/liver function,how neutropenic/anemic you are etc, obviously something that only a myeloma specialist can understand and advise you on.
However, if you don't ask, you may be working your way through a flow chart that the NHS has provided, one that has served you well, but that may not be exploiting every option possible. Most consultants can't question that flow chart because of their position in a hierarchy and their relationship with conformity, as well as because of funding issues. Sometimes someone with a higher 'status' has more freedom to look at different drug combos.
Anyway, I'd think about Rev with a combo of cyclophosphamide or bendamustine. Yes, it could make you very sick, but if you are the kind of patient who tends to respond to meds while you're on them, you might make a case for experimenting with very low levels of these meds to minimise symtoms. Another option for strengthening the potency of a immunomodulator like Thal or Rev, is to add an antibiotic- Clarythromycin. It has side effects of course. This antibiotic is known as 'Biaxin' overseas. Studies have been done which seem to indicate that it can make remissions on Thal and Rev last longer if it is taken at the same time. You can google these studies yourself if so inclined. It's not terribly expensive. Your consultant would have to be prepared to go outside the NHS flowchart, but I believe it has been studied in very reputable contexts. Also, sometimes even a drug like Velcade, might not work on its own, but together with Rev, because of synergy, could have an impact. Also another question: would getting some intravenous immunoglobulins strengthen your immune system, now, or in the future? And has anyone ever mentioned the idea of a reduced intensity mini-allo? Yeah, I know how dangerous they are….
You could also try and find out whether you can be on a trial for Immucin, a vaccine developed in Israel, that has very few side effects. I know that's a long shot, but why not ask whether they know when trials of that are moving beyond Israel or what it would take to make you eligible. I recognise that all my suggestions would have to be vetted by a qualified myeloma expert.
Best,
Eva
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