David, I am so saddened to read your news. You have been doing so fantastically well with your SCT remission, with your daily walks, holidays and visiting and home chores I have been cheering you on while being more than a little envious… and now this.
I really hope that the treatment, be it primary, secondary or surgery catches hold of it and brings it under control. You don't deserve this, nobody does of course but on top of Myeloma is a bit rich. Nearly all secondary cancers are blood related but this is something rare and unrelated.
All my best wishes, please keep in touch with developments where and when you can.
Vasbyte indeed.
Dai.
Hello All,
Thank you very much, its so good to see so many supportive messages.:-D
I had a very nasty and messy week and ended up inside on Friday morning. I managed the DayCase on Tuesday but felt terrible all day… I was bled etc., and the Doctor came to see me when the results came back and said it had been decided to refer me to the Gastro-Intestinal Unit… but in the meantime it was back on the Flagyl with a two week supply to last me until I was seen.8-)
The next day I had a call from the DayCase Doctor who had been excellent asking me to come in the next day to check on my potassium levels which were a bit low and to confirm my C-Diff… a bug that we all have in our intestines but can get inflamed and infected usually by either chemotherapy or anti-biotics. :-0
I went to reception where the receptionist dealt with me straight away by taking me to a small isolation room and left me with 'the Doctor will be with you soon'… which meant 1.5 hours… while in the meantime my imagination was running riot by what they had found that meant instant isolation. It turned out that patients with C-Diff are automatically isolated… for while it is not contagious in itself the spores from motions can be picked up by vulnerable people.:-P
I went in feeling terrible but gradually improved during the day.. so the Doctor reluctantly let me home, which I was all for… but bad idea because I had the worst evening and night of my life and ended up interred next afternoon… by which time I had nothing left to give up or down.:'-(
Luckily, wet lettuce as I was, I started to improve. Several failed attempts at inserting a cannula left my left arm and the back of my hand battered and bruised at which the intern said he only wanted it in to give me fluids and left me with instructions to drink plenty and left me with four separate cotton wool and tape plasters covering some brahmas of bruises.:-S
My DayCase Doctor came to see me early Saturday am and said that I was to have no bloods taken that day and if I was the same or better by Sunday am I could go home… the Flagyl had kicked in and I was improving significantly. I had eaten and drank very little on Friday but Saturday saw and improvement if not my temper. I had written out a full medication list for the induction intern but he had only signed for one day only… and had left off three medications. I had taken in enough for Friday and Saturday am and an extra strip of MST and my Revlimid. Suffice to say that on Friday evening there was a battle for each tablet (literally) and because they don't deal with MST I had to wait for a Doctor to sign off for their equivalent. My Pyridoxine and Gabapentin were not even on their list which meant a Registrar had to prescribe but there was only one on duty from a small pool of Doctors post 6pm so there was a problem.
Luckily I had not handed over my stash by then so I took what I needed on my own volition. I thought that everything would be sorted the next day but naive me. They confiscated my stash and Saturday was as bad as Friday, with medication coming in dribs and drabs all day and mainly on demand by me. At eight thirty on Saturday I received a couple of tablets and asked about my Revlimid… they had a strip provided by me behind the desk but their medicine chart, made up by the intern, said Friday only. This mark you on a specialist haematology only ward… I supplied them with a second medication list with strengths, times etc., and asked for a Doctor to sign them off… especially my Revlimid. I was told at eight-forty five that the Doctors pool had the list and would ensure my Revlimid was ratified as soon as possible. I enquired on the half-hour every half hour and was told 'soon'… I received my Revlimid at 2.30am.:'-(
I could have done without the hassle as I tried to recover but something tells me that that same hassle vitalised me… oh, and it was my DexDay too.:-D
Anyway, things are picking up now… I was told my medication was down from pharmacy at 10:30am and to ring Janet to come and get me. She arrived at 11:30 and of course I was finally released at 3:30pm.;-)
But I'm home… feeling very weak with a HGB of 8.1 and my neutro's down to 1.5 but I am sure they will pick up over the next few days with a follow up on Thursday am.:-)
Home is good.8-)
Thank you for your support and allowing my little rant.:-)
Dai.
Well I've tried to fight this infection off but it has got the upper hand… again. SoI am on my way into the Day Case where I will throw myself at their feet and say 'sort this out please'. 😛
I real have had enough… the 5th bout since the end of May… not much fun and I could do with some fun right now.
I'll get in touch when I can.;-)
Dai.
Well the Flagyl worked very quickly and very effectively. Back to normal by Saturday 11th August and feeling really good.:-D
Consult on Monday 13th and consultant looked at my records and noted that my three independent samples were all negative… that is it wasn't a parasite… but still the medicine worked. I had a consult on Wednesday am with the Radiologist/Oncologist re my fractures in my shoulder and scapula and decided on ' No further action at this time.' 😉
As with the consult I had with our top orthopaedic man from the Queen's Medical Centre, it was agreed that my body has multiple weak areas, including at least 5 fractures but while they don't bother me we will leave well alone. Mr Manning gave Janet and myself a guided tour of my skeleton… it seemed like a 50/50 compilation of missing marrow, small fractures and masses of metastases. No wonder I ache sometimes… and I should be pleased with my mobility given the circumstances. But given the stage I am at any attempts at repair could make things considerably worse… so I have 2 telephone no's that will give me access to Mr Manning and the radiologist/oncologist with 48 hours and no further action at this time… my decision with their approval.8-)
Felt great all week thanks to the Flagyl and we had my eldest daughter and her partner for lunch (they were very tasty) joined later by my big sister and her husband for a lovely couple of hours of chat and wedding plans (daughter and partner) for October 20th Wedding.:-)
By 6:30pm we were left to our own devices with the windows wide watching the myriad butterflies on our Buddleia's with not a puff of air to be found and both of us clammy and hot. I injected my Clexane and took my daily temperature. 38.03… double checked… 38.01 and then it started… my infection was back.>:-(
So all evening I had the long rumbles and wind turbine followed by loose motions etcetera. I took 2 paracetamol at 6:40 am and my temperature came down immediately… no more paracetamol since and my temperature has remained in the normal range. I have drunk liquids for Wales and semi-starved myself for 12 hours… it seems to be backing off and generally I feel good (the last time it came back I felt ill immediately).:-P
So… its watch this space and see if I can get it to back down and stay down. If not, if it becomes a fight, I shall go straight into the Day Case Unit and they can sort it for once and for all (I know this will mean a stay inside but if it is 'back' then it needs proper consideration and clinical investigation).8-)
Ah well… but I am being positive.
Dai.
John called Dai… Dai called John. All's well and first contact has been made… it's Star Trek all over again.:-D
Keep an eye out for John's all day event folks its sounds like a very diverse and exciting day and evening.:-)
John is pushing the boat out with this day and the support he is receiving is phenomenal.:-D 😎 🙂
Dai.
[quote]Hi Dai
1. Where has your post gone?
2. Are you better?
3. Did you go on holiday?
Love Helen
[/quote]
Hi Helen,
1. No idea… It's happened before to other posts but a first for me. 😐
2. Hopefully… Yes. It's been a week since the 'Flagyl' kicked in (finished course last Sunday) and so far, so good but my consultant checked my records and said that the three samples I sent in proved negative… So it wasn't a parasite by the looks of it. I don't care… The medicine worked and I hope it stays that way. 🙂
3. Holiday? What's that when it's at home? Nothing planned at the moment but perhaps in the Autumn… If I can stay clear of the dreaded lurgy. My consultant (a new one – the first ever seen somebody new outside the three majors) informed me that I have been laid low by this current infection since the end of May… So I do hope that I have broken the chain with 'Flagyl' . 😎
Thanks for chasing me up… I have been quiet in a lot of ways this week. 🙂
Dai.
Hi Lyn,
I don't know how Janet will cope when I am gone… She is an extremely practical and pragmatic person, so I am sure that she will survive and thrive on her own… but as far as grief, grieving and moving on is concerned I can only guess and hope.:-|
We talk about life after Dai… we are extremely close, husband, wife and best friends.8-)
My heart skips a beat every time she comes into the room… even if she has only been into the kitchen to make a snack or comes in bearing a tray of tea and treats… I can't help it, it has always been so.:-D
Janet loves me unconditionally, I know this and she knows the same from me… of this we are strengthened and comforted… it is our shield and armour against the world. But it is also our strength against being left alone… Janet could go first, who knows? But I am firm favourite with the bookies.:-)
I believe that Janet will miss me tremendously… but she knows that there is a world that has been denied to her for the past 4.5 years… more time with Kirstin and the children, including holidays… time back home in Wales with the eldest, an artist and so very much like Janet. She has decided to stay near the Grandchildren but visits back home to Fishguard can be more frequent and for longer stays. Then there is the very active and diverse local WI etc, etc, etc. 😎
Janet has always detested hospitals and her way of caring for me prior to MM was to fill trays and flasks various and leave me for the spare room until I walked out of my pit fully recovered. But her care for the past 4.5 years, including getting used to the hospitals and its processes and procedures etcetera has been exemplary… with hopefully at least a couple of years to go… but at the end she will be glad to move on from those places and those roles.:-)
As stated, I don't know how she will cope with her personal grief… but I hope that it is filled with love and remembrances that eventually help her move on… and not drag her back or down… I don't see it that way and I hope I am right. MM was Dai MKII… mentally still the same but physically… different. The person she will miss the most will be Dai MKI… and he has been gone for quite a while – and I am hoping that fact will make it a little easier for her to let go.:-|
Just thinking aloud. I hope that you can find the strength to move on… see joy in a thousand things on your own… and eventually walk a path of Lyn's choosing and find that it leads to a different life but one filled with smiles, and joy and love of life.:-)
Dai.
Good for you Keith… I doubt that your PP's will shoot up if your Dex dosage comes down… job done, so get that Dex down to the best level available.8-)
Regards:-)
Dai.
Hi Ali,
Superb advice already, especially from Eve and Helen.:-D 😎 🙂
All I would add is to make sure you take your breaks away from caring, away from the house. Janet does,nt like to leave me on my own but at the start I insisted and now she enjoys her mornings, afternoons, days breaks with Kirstin our daughter and the grandchildren. 😎
It is so important to have your own time and as the MMer I enjoy the fact that Janet is relaxing away from me and I revel in my own space and silence too.;-)
I know its early days for your Mum to be left to her own devices but it doesn't have to be you who is there to care at all times.:-)
Dai.
I only had 4 Cycles of CDT and they were not at all pleasant… but with a starting point of 3,500 Kappa Light chains cut to 0 nil, nothing, zilch after 3 Cycles I was enamoured with my treatment and determined to stick with it whatever the short term cost to my body and took up my mantra 'Whatever It Takes' which still abides to this day. We carried on with Cycle 4 to hammer it home and then started the procedures for my SCT. 😀
I was fatigued but I was also driven, almost obsessed… with the practicalities of my mantra… determining to be positive and not to allow any form of negativity to cross my threshold, however well meaning its form took… and the drive carried me forward. I felt great, my bloods said marginally Okay but my positivity carried me forward. 😎
Regards 🙂
Dai.
Hi Paul,
Welcome home (home is where the hospital isn't) and well done.
Evryone will tell you to avoid infections… and so will I. You say you live in a rural area where there is little public interaction if you chose, well choose… and extend it to all but the very closest of famiily and friends for the next few weeks. I am sure that everyone will be ultra sensible regarding feeling in tip top condition before visiting but you should also ask them to extend their condition to include that of their family and work colleagues too…. says Dr.Dred. 😉
Enjoy your recovery as much as you can but take it one day at a time… but as my friend Woody Guthrie once said: 'Take it easy but take it'.8-)
Regards:-)
Dai.
Dear Lynne,
I am so sorry to hear of such sad news. I know that John was receiving his dialysis and it made me so grateful that despite all my infections and other ills that I never had to endure three visits per week for such a draining procedure… he was a very brave man and endured so much.
I am gladdened that you had the last four weeks together… intimate and comforting to the end.
Please take care of yourself in these early days of grief… I hope that you have family and friends to help you through your days and some good dreams to help you through your nights.
Love and regards:-D
Dai.
Thanks Helen and Tom and you are both right,
On day 3 of 5 with Flagyl (metronidazole) and 'Voila' it seems to have worked a miracle. I woke this morning and took my temperature (I didn't need to because I felt 'cool' for the first time in nearly 2 weeks) 36.60… perfick. Grumbles and gripes gone, just a smidgen of internal wind, motions normal, birds singing on my windowsill (hold on, where's that slipper… good that's got rid of them).:-D
So good news, with 2.5 days of treatment to go. From what I have read online Flagy seems to be very effective against parasites and often produces 'miracle' like results. I was slightly sceptical given the length of time I have been in such discomfort but I was hopeful… and Flagyl has seemingly triumphed!:-D
Rang the surgery this pm for results of my tests but as yet none returned… so I left the good news for my GP… with such tawdry returns from the testing centre I am ever so grateful that he prescribed in advance… I felt so bad on Wednesday before starting the treatment, barely managing to drag myself from bed to WC and back and now here I am, 2.5 days on Flagyl, feeling almost normal… still washed out but that's to be expected but hopefully a couple of days up and about and fresh air (with sunshine please) and my recuperation will be complete.;-)
Working my way back to Tickety Boo.8-)
Dai.
Hi Eva,
The picture of you in an Internet Cafe somewhere in London, on your ownsome while waiting for such important news paints a forlorn portrait. Please keep in touch when you can and let us know the outcome.:-)
Wouldn't it be nice to have a group of volunteer 'safe houses' in major towns and cities where MMers (and other cancer sufferers) could drop in for a coffee, a chat or just somewhere inviting to wait for appointments, treatments etcetera… perhaps one day.8-)
All the very best.:-)
Dai.
Hi Keith,
Well with those readings it is certainly mission accomplished… which makes it hard to argue against the dosage, which is a pity… because you may well have gained the same results on a much lower dosage. The Revlimid has been doing the dirty work, shoulders down, grappling with the cancer cells, capping them and watching them implode… Dex does the back up work, maintaining the body, boosting the system.
I still get the sweats… several changes of tops especially but thankfully this is getting more and more contained to DexDays… once a week (today in fact because I felt too weak yesterday to face a DexDay).
But the med my GP prescribed on Wednesday has seemed to work miraculously… and I am feeling so much better that even my DexDay seems good.
Good luck for Monday… I hope you come home feeling much better informed and more hopeful of the next few cycles.
Dai.
