[DaiCroParticipant]

[b]Full Stop! Instant Mobility, Carry On Regardless & Lovely Little Cutbacks[/b]

I had my 2nd infusion of 4 of Velcade? Cycle 2? last Thursday accompanied by the usual 20 mg of Dex? with another 20mg of Dex the following day, which set me up for the weekend. 🙂

I should coco! I had a completely evil 4 days, starting Thursday night and culminating Monday Am. I was more or less bedbound throughout? eating very little to nothing but as thirsty as hell? although everything I drank tasted of the vessel it was in rather than the product? i.e. from porcelain to plastic via glass and bone china. It was slightly scary but nothing compared to the surreal dreams? some while awake and some while dozing but mostly while sleeping. 😐

While wide-awake I could hear the occasional bullet ping by my ears, loud coughs, people calling my name and the occasional light but very real touch on my arm. I was concerned that these illusions could concern between people being present in the room and not? i.e. the bullets and coughs could happen at any time but the name-calling and light arm touching only occurred when I was alone. :-S

I have a ?Football Manager? game, which I enjoy playing on the computer in the bedroom. It keeps me mentally involved and I particularly enjoy the game that is played after I have selected the team from my squad and given them the specific instructions on how to play the game. 🙂

On Saturday afternoon I set the game to play (Arsenal Vs Tottenham) and instantly dozed? I had fought to stay awake during the set-up, having to backtrack several times before I was set to play. I started the game and lay back into the pillow? I awoke to the cheering of the fans and noted from the scoreboard that Arsenal had taken the lead after only 3 minutes? the interesting thing was that I looked up at the scoreboard from the Arsenal bench and all around me players and staff were jumping up and down, as they would do? then it turned slightly scary when one of the older coaches (whom I recognised as David Court? just promoted to Assistant Manager) and he smiled at me, reached out and lightly touched my arm. I felt it. >:-)

I was in the game, wide-awake, aware of everything around me, with no sight of bed, bedroom or my reality? with no idea how to get home. Fortunately the game went into replay mode and I found myself in bed and staring at the screen. I saw out the game and saved it as soon as it allowed, then switched my computer off, layback into my pillow and fell into a deep and fortunately dreamless sleep. I woke 6 hours later, I told Janet about the waking dream? but she wasn?t really there! So I closed my eyes and woke again to find another hour had passed? and this time Janet was touching my arm and asking if I was okay. I bid her pour me some water and to pass me the ginger beer bottle? everything passed muster and I accepted her as being real and told her of my dream. 😐

Early Sunday A.M I watched the Canadian Grand Prix? again wide-awake. This time I found myself in the pit-lane, watching as Jason Button had an extremely quick tyre-change and refuel? 4 Tyres and a fuel-fill in less than 4 seconds? I clapped my appreciation and the entire McLaren pit-lane team looked up at me? this time I just closed my eyes for 5 seconds and when I opened them again, I was in bed, watching as Jason rejoined the main race. :-0

They were the ?Highlights? of my weekend, surreal events and wide-awake dreams but there were plenty more of ?surreal-while-sleeping? in high definition ?Technicolor? dreams and wide-awake bullet dodging, loud coughs, name-calling & the slightly disturbing light arm touching? slightly disturbing because I found them curiously comforting. 😐

I was in for my next infusion of Velcade? 3 of 4 of Cycle 2, booked for 10:00 a.m. Janet pulled into a Blue Badge parking bay at 9:50 a.m. The Bay was in the Ambulance Delivery Area (non-emergency). I had woken feeling much better and far more importantly, ?Quite With It?. We had chatted throughout the 18-mile, back-roads route from home to the hospital? Janet noting things in general (she can download images from the countryside, commentaries from Radio 5, changes in each of the villages we passed through, especially those incorporating planning permission and then draw me into discussion? I never mind because her discussion points are always ?quite interesting?. 🙂

Janet parked up and then came around to the passenger door and opened it? still answering one of her points I fairly jumped out of the car and looked across at the doors into the hospital and Janet?s chosen route through to the Haematology Unit? a mere 30 meters to the main doors and then about a hundred meters to the Day Case Unit. It was a route I had covered many times before? but this time I knew that I couldn?t do it. 🙁

?I can?t do it?, I told her. ?How far?? She asked back. ?Nothing?, I said? ?Not another step.? 🙁

I could see the concern in her eyes; this was a first. :-0

Janet got me to sit back in the car and informed me that she was going to get me a wheelchair. She was back within 4 minutes and I was swiftly transferred into the chair and whisked into the HC main entrance where one of our lead nurses was waiting. She got us a place at my preferred place at the back of the unit waiting room (i.e. preferred while I was wheelchair bound). Janet booked us in at the Day Case reception desk while I gave our lead nurse a quick summary of the last 4 days. 🙂

Our LN offered us a lease of 1 of 3 new lightweight wheelchairs that had arrived that morning? Janet was absolutely delighted? it not only covered the immediate short/long term problem of my sudden loss of mobility but it also offered her the chance to take me to places? shopping, cinema, theatre, museums, National Trust Buildings etcetera? her exuberance was both real and passionate. I realised that the time had come to accept something that I had refused to accept for the past 4 years? use of a wheelchair that would take me beyond the ever decreasing range of my mobility? after the present 40/50 meters when I suddenly seize up. So I signed on the dotted line and made one girl very, very happy. 😀

I told our LN that I thought I should have my Velcade infusion reduced? that these side-effects were too much to take (I had noted them building up over the past three infusions and now they had grown into a very unpleasant manifestation. :'-(

The last visit on Thursday had shown a marked improvement in our waiting time. Due to a negotiated job lot of 10 a.m. appointments we had been cutting times at about 15 minutes per visit. On Thursday we had arrived at 9:55 a.m. ? our Velcade had been made up and we got called through at 10:00 a.m. and were free to leave at 10:30 a.m. precisely! We virtually ran out of the Day Case Unit to ensure an in/out of 30 minutes! My request to reduce had skewered any chance of a quick in/out. Our LN said that the Velcade on site could be re-labelled but my dose would depend on the decision of whether to reduce and/or the level of reduction (the last time I was on Velcade I had it reduced from 2.75 to 1.75 and the from 1.75 to 1.40 due to the level of Peripheral Neuropathy ? this time it was for a different complaint. 🙁

Our LN informed me that the decision to reduce would be made by a Doctor on the clinic, following a review of my notes and an examination. Within a half-hour I was called through to a side-room by a relatively young female Doctor from Anglesey? she was a Gog (Northern Welsh) but at least she was Welsh and therefore instantly elevated to just sort of magical properties. Actually she came forward and wheeled me into a side-room herself. She gave me a fairly thorough physical examination and then went through my side-effects and feelings of the long weekend. She did the usual pre-Velcade Blood Pressure readings of sitting down followed by an immediate reading while standing up. The Doctor recorded the readings while wrinkling her nose? which raised my suspicions? but she immediately went into her prognosis. 😐

She said that her concern in reducing the infusions, while understandable, might well affect the future plans for my treatment. The plan for my future treatments was to reduce the infusions to 1 per week? making each Cycle to last for 4 weeks plus a 10-day rest period? making a total of 38 days per Cycle against the current 24 days. This would stretch out the full 8 Cycles, giving me physical time. We are not looking at going for full-remission this time ? we achieved full-remission after 2 Cycles last time and kept it that way for a full 6 Cycles before breaking treatment and allowing the remission to sway? but unfortunately the mm returned within 6 weeks when my consultant was looking for at least 6 months and hopefully 12 months or more. So remission is not the target this time but stretching the Cycles for as long as they can most definitely is! My relatively young but very astute Welsh Doctor gave it to me straight? a reduction in the Velcade could/most probably would? put the Kybosh on the stretching of the Cycles and revert me to the normal 2 + 2 + the rest period. I acknowledged her prognosis and agreed to another full dose? I would have to try to find a way around the surreal side-effects for myself.. :-S

I was immediately called through to a side-room in the Day Case Unit (pot-luck, nothing sinister) and the staff-nurse assigned to me carried out the blood-pressure sitting/standing once again? procedures are strict and she couldn?t use the Doctor?s readings? my sitting readings were 170 over 85? my stood up readings were 130 over 80 ? a difference in the top values of 40. The staff-nurse said that if the difference in the readings was 30 or more they were told to take advice. The usual advice was to not go ahead? and my reading was 40? so she very much felt that I had very little chance of going ahead at this time. She went off to take advice all the same. She was back within five minutes with a surprised look on her face with the instruction to go ahead? but for me to take every movement very slowly and not to stand up quickly at any time. The Staff Nurse said that the Doctor had actually looked quite happy. :-/

So I was infused and was free to go home? but I had asked for a copy of my bloods results and I had to wait awhile. They eventually came within the half-hour, carried in by my Doctor. She handed then over and said she had a theory. Each time I stood or walked quickly my blood pressure dropped quickly and was slow to recover? so making my movements exaggeratedly slowly, especially when standing or moving quickly, might help avoid blood pressure drops and avoid the ?surreal? waking dreams that were disturbing me so much. I agreed to try for slow and very easy. I also thought that I would keep a log of how many times I got out of bed to go to the bathroom? day and night and see if there was any correlation between the movement and any waking/sleeping dreams that may occur. 😐

I looked at my bloods results several times. :-/

My White Blood Cells were 6.4 (usually 3.6).
My HGB were 12.6 (usually 10.2 ish? 12.6 at least equals or surpasses my highest ever readings since starting treatment).
My Platelets were 56 (usually 100+ and the only disappointing reading in the results).
And my Neutrofils (Neuts) ? ?my protection from infection? and the MMers best friend were 3.2? perhaps low for many of you but a sight for very sore eyes, for me and any others who have not enjoyed being Neutropenic at any time during their MM journey. 😛

So apart from my Platelets I was understandably delighted? although they most certainly did not reflect my general health and well being. My Doctor informed me that there is a distinct possibility that my readings were inflated due to my being dehydrated from a lack of fluids over the weekend? she instructed me to drink at least 2 litres per day and I informed her that my usual target was three litres per day. I agreed to imbibe for Wales and so far I have cleared my 3 litres target each day.:-)

We departed slowly, almost regally, out of the Day Case Unit and then the Haematology unit, with Janet quite happily pushing her wheelchair with a determined air (it is very nice but very lightweight and the most basic folding and braking systems? but to her it is a delightful chariot of freedom from the house? and I am truly touched and humbled that she wants to take me with her. We heard a calling of my name behind us as we hit an upward and onward slope in the corridor and I said to Janet ?Can you hear that?? And she amazed me by saying, ?Yes!? She was not that foolish to stop and wait for the voice to catch up with us on the slope? she bent her back into the job and just said: ?This will soon get me fit?. A tad breathlessly I thought but full of endeavour. 😎

The voice was that of our relatively young but extremely wise Doctor who steamed past us and waited at the top of the slope (I don?t blame her? she had her hands on her hips, recovering from her run from the Day Case Unit through to the main entrance but finding no sight of us and determining that there was no way we could have reached our car before she had set off on her chase. So she doubled back and ran up the corridor that would take us to the Coffee Shop and the Ambulance Delivery Area Main Entrance… and caught up with us at the top of the biggest slope in those parts? pardner. After a recovery time she delivered her reason for chasing us. In partnership with her ?take it easy? strategy and the re-hydration plan, she also wanted me to cut my Dex intake by 50%…. I could have kissed her. :-0

So home for 1.5 days, keeping true to the slow and easy and the hydration plans. Luckily my 10:00 a.m. appointment had caused me to take my normal meds but not my Dex, which I had brought with me but had not taken due to all the kerfuffles. 😉

So only 5x2mg of Dex on Monday and the same again on Tuesday with Wednesday Dex free before the next infusion + 50% Dex on Thursday and then 50% Dex on Friday before 10 days of rest.8-)

So far, no more confused or disturbing wide-awake dreams, none whatsoever. My appetite is slowly returning and my mental abilities, especially my control over them, gets better by each hour. 🙂

What a star? I think my Doctor has worked this one out perfectly. She has 2 more weeks to complete her 8 week stint in Haematology, which will also complete her 4×8 stints in the major departments in the hospital and then the bid for registrar. I will follow her career with interest. As for my bid for the long stretch? well after my last rest period I was more or less bouncing like Tigger and they almost had to tie me down to take my bloods? which included the Free Light Chains test that I need so badly to be positive for the 'stretch'? so watch this space and wish me luck. 😎

Dai.

PS. This post can be ordered on Kindle? free download. 😀

[eveParticipant]

Hi Dai

I was asking you on another post how you were,plus I got a bit mixed up about your meds,so take no notice of it.No you are not dreaming again just me loosing the plot of we're you are on the roller coaster,if that makes sense .!!:-/

You do surprise me sometimes,how an earth have you managed without a wheelchair!!!!,Slims had one more or less from the start,I am glad to say at the moment it's gathering dust,but at times he could not have done without it,but he did go into it feebly kicking and screaming,but when you have to choose indoors or out doors there is no contest,!:-)

Slim had lots of dreams in ITU,my own thought was to much medication,but a couple of weeks ago,he kept waking me up,he really believed he had elbowed me in the eye and knocked me out,hence the 5 times shaking to wake me up,this is when he was not on treatment so I cannot blame the drugs!!!. He would accept I was ok then go straight back into dream and to him it was very real. He got so worried,we got up and had tea,started the day early.

My own thoughts on this dreaming,is you cannot be bombarded someone with so much Chemo without it taking its toll,physical and Mentally .its good that you feel able to mention it,without feeling you are loosing the plot, We have come to the stage of seeing the funny side of Slims dreams,but one or two have been nightmares.:-/

Dai I cannot get over how quickly you are in and out with Velcade,Slims use to be an all day job, I think Helen is having problems with her hospital with the time it takes with Velcade.
How can one hospital be efficient and another be so inefficient !!!!!

As for your bloods and general condition,you must be over the moon,and what can one say about the Dex, Slim leaves a lot to be desired on the Dex, even when I remind him its the DEX talking. Love Eve

[tomParticipant]

Aww Dai

I don't dream?? or if I do I don't remember them :-/ and when our Grandson was telling us about his dreams I told him I don't have them? he looked at me all sad and covered his eyes and said you must be in the black when you sleep then Granddad 😎

Your bloods seem great Dai keep well and stay strong

Old Tom Onwards and Upwards xx

[MothasParticipant]

Enjoyed reading that. Had to do it in stages mind 😉

Glad your super smart young doc found a way forward for you dai.
All strength to you.

[sanParticipant]

Dai i wish you all the luck in the world, the better half of me is welsh, Gran was from Swansea a great woman, so pleased that you had a young Dr who was on the ball. Take care and so pleased that you are gaining ground. My Mum ended up with drug induced acute hepatitis probably due to revlimid so not sure where we are going now, she is slowly improving coming out of hospital tomorrow but her liver is damaged so hope that it slowly recovers it will be interesting to see what they will do re her trial RCD guess that it will change now maybe no chemo for a while, she has 3 cycles and pp17 but that was 5 weeks ago, well take care and sweet dreams San xx

[HelenParticipant]

Hi Dai
It's good to see you hanging in there and maybe the reduced dex might help with the dreams, I hate the dex, it makes me verbally aggressive and tired and I have no sleep my brain will not stop! I've been writing letters in my head for days now.
I thought your post was so funny especially the hiding in the wheelchair!
Look after yourself, hope you have a better few days
Love Helen

[VickiParticipant]

Blinking heck Dai,

The first bit of that sounded like a horror story! However at least they have got some kind of plan and it has worked for you. Sorry you have had such a rough time thoug 🙁

I don't get this mm, although Colin is improving in strength and goes to work sometimes at work and some times at home he gets real peaks and troughs Dai. Yesterday he felt rough and he said he felt as low as he had been all the way through? I must admit I thought he would have been better than this by now generally? Then tomorrow he could be up and about like a spring chicken…..

Dai don't you give up you keep the rest of us going 🙂

Vicki and Colin xx

[jmsmythParticipant]

Dai what a terrible experience. Sounds like something out of a Stephen Kings novel 🙁 .glad it ended. Your bloods look good – hope that its not a blip and they continue to improve. Franks platelets have dropped last three visits to consultant 😐 . Sounds like you had a wee angel in the doctor. I hate seeing a different registrar every visit and having to go over the story every time. Take care Dai and hope things improve. Best wishes to Janet
Love Mean x

[PatGParticipant]

My goodness Dai, what a story! The arm touching could have been a guardian angel type presence, but please don't press me for explanations. Not very well up on all that, but willing to take what is offered. I do, however feel my mum around when things are feeling particularly bad. Might just be wishful thinking on my part, but it seems to help anyway.
What I wanted to ask was – do you always have sitting/ standing bp taken before velcade? I am about to start cycle 8, once weekly with cyclophosphamide for the first 3 weeks and 20mg dex for 2 days each week, but I have never had the 2 bp readings taken, nor have I seen anyone around me waiting for velcade have them. Just the one sitting reading is taken at Leicester. Is this uncommon then?
I am pleased to hear that you have agreed to a wheelchair, it opens up so many more possibilities and chances for precious experiences together. Hope things start to get a bit better for you now.
Take care
Pat xx

[eveParticipant]

Hi Pat

I think treatment before Velcade varies depending on your hospital plus how good the person who is dealing with you.

I would like to see general ops done every time,treatment is administrated,they do general questions,are you eating!!!!but who looks at it !!!!

Slim had 6 cycles twice a week,and I can honestly say never had his blood pressure taken once,they did weigh him,asked general questions ticked the green boxes.
He,s just started Rividimid ,all though I said 3times he had a chest infection ,(you would think that would be a hint!!!) they did not,take blood pressure,temperature,but that's Slims hospital,they seem to have different procedures in different hospitals. Eve.

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