[DaiCroParticipant]

Hi All,

Consult yesterday morning at 10.40. Woke at 9.40 am… overlay. I am usually in charge of alarms etc., so it was down to me. Janet woke me at 9.30 and asked if I was Okay… it took me a few seconds to realise that no, I was not Okay. Took temperature… 39.14… whoops.:-P

Janet quickly got me ready before rushing off to get herself ready and pack a bag for a stay. She did well (as usual) and we were in the car by 10.10. I retook my temp at 10.30… 20 minutes from the hospital and it had dropped slightly to 38.8. Got into the clinic and took advice from our lead nurse. She checked with consultant and advised I had my bloods taken and then attended clinic as per usual. My temperature was taken and showed 37.70. All well and good but while my temperature was dropping into normal ranges I still felt very hot and very unwell.:-|

Bloods were taken and after a very short while I was called in by my consultant… a fairly new consultant but we had met her before and found her thorough, willing to discuss my case and willing to negotiate.8-)

HGB 9.0 Platelets 102 WBC 6.4 Neuts 4.2 . My HGB had dropped from 12.6 but my Consultant said that was more than likely due to the high temperature and generally the bloods were excellent for this stage of treatment… especially the Neuts. She confirmed the drop in my Light Chains from 3,087 to 380 and looked slightly put out that we had already been informed… I can understand that as there are so many 'Bad News' items to pass on, that such 'Good News' items are joyous rarities and it must feel so good to be the bearer of such news… and to have someone to get there before you must be disappointing in the least.:-/

It was agreed with my consultant that Velcade would now be given once a week on Mondays at 10am x 4 weeks followed by a 10 day rest period (starting from the end of week 4, making the rest person 13 days in total… thank you very much). This new regime would start immediately with the exception of the starting time today which would be 1pm. My Consultant also agreed to keep my Velcade at full dose (2.75) but a Dex dose of 10mg to be taken on treatment day and the day after. Amen to that. She carried out all the pre-treatment observations personally, to her own satisfaction and found everything A-Okay. She even examined my 2 bedsores after Janet mentioned them (brave Lady) and she commended Janet after finding them clean and on the mend. 😎

My lead Nurse would take up the prescription to the Pharmacy personally at 12.15pm (Velcade has to be made up on the day due to its relatively short life span)… so we were set up and ready to go. 😎

[b]Here endeth the good news. [/b]

I still felt ill, as in hot, bothered and stiff and sore (although my temp hovered around the mid-37's) and how ever I sat I couldn't get comfortable. We arrived and registered in Day-Case at 11.45 and expected to be called through at about 1.pm.:-)

I suffered in relative silence until our call through into the inner sanctum at 12,30pm, a nice surprise and a comfortable reclining chair… which soon lost its appeal as our wait extended to 4.15pm. Usually once you are called through you are seen and treated within the hour (25 minutes last time, 20 minutes the time before).:-S

As the afternoon progressed we made gentle enquiries and excuses were made. It was a Monday and there were 8 Velcade patients in all to be treated and some of them had there treatment doses ordered on the previous Friday and were obviously being given priority. We saw several people arriving, being treated and leaving within our normal 30 minute windows. Janet was getting very angry, mainly on my behalf because I was still feeling unwell and couldn't get comfortable for the life of me. Because of my extensive bone damage I cannot lie on either of my side or on my stomach… it is on my back or nothing and my bedsores, while scrupulously clean, are still extremely sore if directly exposed to pressure. 🙁

Eventually Janet let her anger escape in the fashion of a complaint, where she was answered with the reason for our delay. According to an official statement from the Pharmacy, the Pharmacist mailing up the Velcade doses, did not receive my prescription until 3.45pm and was working on it now. Janet said 'Someone is telling porkies and I will be following this up as an official complaint.' :-0

As her frustration had built up she had taken a walk down to see our Lead Nurse who couldn't understand our delay (she thought we had been seen to and gone hours ago) but confirmed she had taken up the prescription personally at 1.45pm and it had been logged in at the pharmacy at that time. So Janet's complaint should be interesting. 😉

We finally departed at 4.50 and got home at 5.30 where Janet got me into bed and where I had the sweetest 2 hours sleep for an age… which partly helped take away the absolute misery of the past 8 hours. 🙂

I feel quite good today (Dex Day Lite) and taking away the misery of yesterday, this new regime looks promising… I look forward to swapping notes with Jo who is on the same regime.8-)

Thank you for listening. 😀

Dai.

[eveParticipant]

Hi Dai

Well may be as the north are catching are southern weather,may be the inefficiency of the south is getting blown with it,and telling porkies a bout it as well,I hope they gave you a butty.;-)

Seriously Dai,its soul destroying,as for porkies>:-( well take them with a pinch of salt:-P ,I think the lies are the worst,why not just admit,they forgot all about you,pharmacy first,and lack of someone chasing up the prescription,

Welcome to our world.Eve PS you did make me laugh.

[MothasParticipant]

Dai sorry to hear that.
The annoying thing is that it only takes 15 minutes to administer the stuff.

[dawstepParticipant]

hello dai
i can understand janets frustration.you were poorly & you shouldnt have been there for so long.i had a similar experience with dawn.i hope your new regime goes well.
best wishes
stephen

[tomParticipant]

Hey Dai and Janet

Well what a to do am sure 🙁 I aint happy and it aint me that had that Bloomin wait, Tell Janet you and her are too bloomin Nice as am sure I would have lodged before Janet did >:-( .

And wow I have never ever been left that long with out a Nurse nor Dr taking an active interest in why I am still sat ??

I hope that inefficacy is not passed up to Scunny.
Big Hugs to you both at this trying time.

Tom Onwards and Upwards x

[mhnevillParticipant]

Hi Dai

I'm just glad you have got Janet to fight for you, and I know it takes something exceptional to get her riled.

Is it my imagination or is your place getting worse? Seem to have been a lot of delays/mistakes recently. Oh the NhS, we wouldn't be alive without it, but it does need an almighty kick up the backside to appreciate the patients perspective.

Now feeling a bit better, I am trying to do my bit by joining our GP Practises Patient Forum. Our two main issues are getting an appointment without having to go through the 8.00am phone lottery, and being able to see the Dr of your choice. An uphill battle I think, but if we can engage the GPs in a meaningful discussion it might help!

All the best Dai. Hope the Velcade continues to bring those numbers down and that those bed sores soon heal completely. Another rosette for Janet!

Love

Mavis x

[DaiCroParticipant]

Thank you one and all for your support… I am putting last week's experience down to 2 things… Start of treatment syndrome (actually the start of Cycle 3 but a new regime of once a week for 4 weeks followed by a 13 day rest/recovery process which to all extent and purpose meant starting again and all that that brings). Today was totally different… in for 10am… called through at 10:20am… treated and home by 12:00pm (including a 40 minute home journey. 😎

Everything went smoothly with friendly chat, a couple of new acquaintances… including Zak, an RAF helicopter pilot with MM at the age of 32… it's just not right. Married with 2 children aged 6 &3… a great career and a young family that he obviously loves to pieces… Zak is as positive as anyone I have ever met, with a love of life and a vibrant, positive outlook on life, MM notwithstanding. It certainly puts my small complaints in their place for sure. He may register and say hello, I hope he does… and if he does I hope we can help him by exchange of experiences etc. I told him about the Under 50's section and I hope he joins.

Week 2 of the new regime has started on a positive note. My nurse for the day noted that my PN survey had included an increase of PN in my hands and she went away to take advice about my 2.75 Velcade infusion. I was quite happy to go ahead and ask questions later but she had already raised the question with the Lead Nurse… who took advice from my Consultant. My Consultant felt that it was important to keep the efficacy of the 2.75 infusion given the new once a week regime and I agreed. So PN noted and Carry On Regardless. I had seen her briefly while I was in the Day Case waiting area and asked her about my Zometa regime… I had not been given any since the last Bendamustine infusion… my Lead Nurse informed me that it is booked in for next week. 🙂

So here we are, on 2.75 Velcade… with monthly Zometa infusion… 50% Dexamethasone and feeling good… physically and mentally with bedsores looking better. I had an excellent weekend and I am feeling as good as I have felt in a long. long time. 😎

Dai.

[ozzyParticipant]

Good news you are feeling better and more up beat. Keep an eye on the pn I have permanent damage in my feet and they are always tingling(dancing I call it!!!) and very painful to touch.Here's to another good weekend for you.
Good health
Ozzy

[tomParticipant]

Welcome back our Dai, my we do sound bouncy today and that makes me Happy.
Keep well my friend and stay healthy.

Tom Onwards and Upwards x

[VickiParticipant]

Hey Dai that's great, so glad you are feeling a lot better……

Keep smiling, as you always do. Gosh the helicopter pilot,32. What's happened to this mm condition, thought it was originally for over 70s! Not good for any age but blimey the average age is getting younger and younger. Roll on research and cure 🙂

Glad you had better treatment this time Dai :-), and good old Janet bet she shocked them getting wound up last time 🙂

Vicki and Colin xx

[BADGERParticipant]

hello Dia
sorry you had a hiccup and things settle down now i found in the begining i needed blood tranfusions every other week as my Hb was knocked back by the treatment so they put me on EPO which has solved the problem blood now hover at 95 so ok my regime was the same as yours except DEX days are 20mgs from this week I go on the once a fortnight after cycle 6 which will give me a bit of a break which is good my PP where un measurable at last check so i hope i get a good remission again
Keep well;-)
Love Jo x

[mhnevillParticipant]

Hi Diane

It really was a tonic to hear you so much more positive after having a much better experience this time round.

Let's hope it all bodes well for the future – a long future!

Are you able to think about a short break between treatments? They say we are going to have some summer so hope you will be able to enjoy it.

Keep battling on.

Love to you and Janet.

Mavis x

[bandityogaParticipant]

Dai

Good to hear you are feeling a lot better and I hope the velcade will kill off the MM. Ian has an infection in his bedsore and being treated with antibiotics. Seeing consultant on Monday, hope light chians haven't risen.

Maureen x

[adamsp41Participant]

Hi Dai…after a setback now good progress is being made ..well done and as always "kick it between the legs":-) stay safe…Phil

[Author]

Posts