Hi Nettie,
That is obviously a photo of you about to launch yourself into thin air… 😎 Are there any photos up yet… have I missed something?
Dai.
Hi Stuart,
I open mine from a web archive on my desktop… but that has always worked perfectly for me on the old site and the new,
But its working fine now.:-)
Dai.
Happy Anniversary to you both Mal and Bruce… and our very best wishes for the rest of Bruce's SCT.
I found that the worst part was approximately day 6 to day 11, when I had 'bottomed out' (I counted Day 1 from the day after my Stem Cells were returned). I thought that I was drinking enough fluids… but not enough to satisfy the medics, so I was put on a saline drip.
Getting about is a big enough problem when you are feeling weak and weary and you need a bit of speed if the 'trots' kick in… I am telling you now that the handicap of a drip stand (both as something to haul around and its component time penalties for getting out of bed and unplugging the electrice before starting your runs – pun not intended but its a pity to waste it 🙂 – can be a problem. So if you are around Mal, bully Bruce into keeping up with his fluid intake. My wife Janet caught a good old fashioned cold around the Stem Cell returns and was banned until she was completely better… which was the day before I came home. Extreme worry for her and misery and loneliness for me… until I invented my SCT Olympics – with rules, time-keeping and records. Keeping a blog and sharing with the denizens of this site kept me sane… and the support I received from the forum was beyond measure. 😎
Keep well Mal, ask questions and allow for Bruce being 'out of it' for a lot of the time. Personally, I felt as dry as a bone, tired without necessarily being sleepy and completely drained of physical energy… but allowing for the runs, a total lack of appetite and the feeling that my skin was stretched too tight for my frame… I didn't feel 'ill' or 'sick' in the normal senses of the word.
The daily blood tests for Bruce's Neutrofils will start soon… and the day will come around (quicker than you think) when the magic reading comes back as 0.1%. A few days later (2 for me) when the reading reaches 0.5% – home will beckon for a 'take it easy but take it' recovery period.
All the best… and please keep in touch if you are able.
Dai.
I hope they fix the glitch soon… us old-timers can break in and out at will but I hate the idea of someone newly diagnosed and in desperate need of a friendly face and a welcoming place…
Monday morning will soon sort things out I am sure.
Dai.
Hi Min,
I'm glad you are not affected… its 1.22am and I'm still having to sneak in over the garden wall.:-D
Dai.
Hi Min,
My heart is lifted and cheered by your news. I am so glad that you have found something to look forward to… I am sure that the days will be filled with exciting things to do and the time spent with Tony will do you the power of good. 🙂
I loved your photo of Peter and Tony and I thought at the time that if Tony's hair turned silver they would look more like brothers (twins even) rather than father and son. 😎
Your time with Emma seemed to settle you (even allowing for wet and muddy adventures) and now you get to spend some quality time with Tony. I hope your travels are frequent and that your children and Grandchildren continue to boost your spirit while you build up your physical and spiritual strength.
With much love
Dai. xxx
Hi Eve and Helen,
I find it hard but still, I offer a weak and conditional congratulations to you both.
The conditions are due to the fact that I sincerely wish that MM had never crossed your paths… that when your illness was finally diagnosed that it was almost anything but MM… in hindsight that is what I wished for myself at your stage. Knowing I had cancer, diagnosed initially (for over a year) as secondary bone cancer with primary unknown, I finally found Nottingham City Hospital and received first-class treatment… but the diagnosis was the very one I dreaded being confirmed and when it came I was stunned for a moment before deciding to fight it tooth and nail.
I was/am surprised that is only a year for you and Slim Eve… it seems like much, much more than twelve months and you have both been through the mill in that time… and it also seems that you have never known any sort of respite… until very recently that is… and I do hope that Velcade turns things round for you both. Breathing space and a touch of normality gives a sense of perspective as well as hope… and the knowledge, that while MM cannot be totally defeated, it is possible to keep it at bay… and when you have achieved that once it instills a confidence that it can be achieved again… and again.
You have managed to get through to the SCT and beyond Helen and I hope that it gives you a good few years with the beast that is MM off your back and into the back of your mind… and that you and your husband (name?) can enjoy conversations that do not contain any reference to illness, treatments and hospitals.
We all know that it is not possible to ban MM from your thoughts, however long or good our remissions… but we also know that there are days… sometimes weeks, where MM is a the kind of shadow that is cast behind rather than in front of us… well, at least for those of us who manage to reach the remission stage, be it CR or Plateau.
I do hope that Slim's current condition is maintained and grows into something positive and promising Eve… and that he gets his chance to grab some much deserved remission… sooner rather than later. I have never said it but my admiration for you both has been constant throughout your MM journey.
So my congratulations has its conditions but you are both here… and much better off than when you started. Long may it continue and I wish you both better health and a hopeful and even cheerful future. 🙂
Dai.
Now that is funny David. I've already pinched it, changed the currency to dollars and posted it onto my songwriting site (based in Nashville). Their type of humour… or should I say humor. 🙂
Dai.
Hi Eve,
I recall my consultant's observation when she spoke at the Nottingham INFODay in March – she said that some GP's go through their entire careers without coming across a MM patient. Most will only see one case… even those who see more will not retain much knowledge because they will be so far and few between cases. As you know from Slim's experience, most of us find our way to a specialist via trials and errors… quite often through CAT Scans or MRI's for back problems where metastases of bone cancer or related blood tests pick it up.
Up until this summer we had our share of waiting for meds from the pharmacy. Janet fumed that the pharmacy would often keep her (and many others) waiting for a good hour or so… without even a chair to sit on. But these days we have a 'courier' service… volunteers who go back and forth for medicines.
We also had a wait on the first day of each cycle while the batch was made up from the consultant's prescription for that cycle. We normally see my consultant circa 10.30/11 am. We normally got called through to the day-case unit (from a comfortable waiting area) about 1pm. Only once did we have to wait until 4pm… because the prescription got buried on the lead nurse's desk. A couple of times Janet popped into Nottingham city centre to the shops (2 miles) but usually I would bury my head in a book… the free tea and coffee trolley came around each hour and offered free sandwiches, orange juice and a big tin full of a variety of biscuits… so yes, we were spoilt rotten.:-)
Specialist cancer units, as described by Bridget, will no doubt become the norm… but in the meantime?
Dai.
Hi Debs,
I am reading this thread with a towel wrapped around my neck because I have been sweating so much. Once I have cooled down I will change my shirt. I am no longer on treatment and my meds are my normal quadruple of MST, Gabapentin, B6 and Bonefos (Plus a chewable Calcium tablet and a Lansaprole anti-acid tablet in the mornings only).
What did I do to get so hot and bothered? Well Janet is over at our daughters house for the day, so I washed up. Fair enough there was quite a bit after I trawled the rooms for debris and I washed down and bleached the sink and tidied up the work-tops and put away some fresh fruit and some veg… but it was only a bit of moving around and gentle exercise, nothing strenuous whatsoever… but the result is the same every single time I expend a bit of effort… hot flushes (the only way to describe it) followed by profuse sweating. I must stress that I almost never sweat while working/doing chores… that starts as soon as I stop. Some days I change my shirt/'t'-shirt 3 or 4 times a day and a complete change 2 or 3 times a week.
I am hoping that this cycle of exercise followed by the sweats starts to ease off as the last of the Velcade finally evaporates from my system (two full weeks now)… I can't believe that my normal meds are causing the problem.
Any other males with the same or similar problems after treatment or because of medication regimes?
Dai.
Thanks for letting us know Donna, please pass on my best wishes to your Mum and Dad and tell them I look forward to their return online and the next steps towards rattling the teeth of the HSBC. 😀
Dai.
Hi Gill,
The i, its big sister The Independent, The Guardian, the Telegraph… are the papers for this sort of story. They all have online versions and every one of them has contact details listed online. Either ring the news-desk or perhaps better still (it is easier to collect and collate your thoughts in writing) send an email with your story and your contact details (email, home phone and one mobile). Keep a copy of your email handy (plus any other details, names no's etc.,) in case somebody from one of the newspapers rings you, you will find it easier to marshall your thoughts and responses with some hard facts and figures to respond to. The journalists will know what to ask so be led by them (there is a big difference in their attitude when they are seeking a story and you are not the protagonist).
By all means contact the TV shows… but for a quick response the papers are the way to go and anything in print will help in your efforts to get your story on TV.
News Desks:
newseditor@independent.co.uk
national@guardian.co.uk
… for starters – the Telegraph has a full list of journalists but no general news-desk (that I could find) buy one of the financial journalists might be a good idea. Make sure you put it for the attention of the printed paper not the online version when you go seeking contacts (the two above are direct print contacts).
Best of luck
Dai.
Hello Etta and Hubby,
I'm sorry that I missed your initial post but I thought I'd say hello and offer a guarded welcome to the forum… guarded inasmuch as I wish that you never had reason to seek us out.
I am sure that you are both in shock right now and desperate to find out more about MM and its treatments, processes and procedures… well this is the best place in the UK, perhaps even all of Europe to find out… straight from the horse's moth to coin a phrase. Please don't trawl the internet, it truly is a frightening and misleading place for newcomers to MM. MacMillans is good but this is the specialist spot and this site is all you will ever really need for information and this forum is full of patients and carers who are of equal importance in terms of knowledge, experience and support.
Regarding your consultant's reply re; stages… its a clever soundbite to say that the only important thing is the treatment but of course you want to know what stage you are at… you want to know everything there is to know about the d**mned disease at this stage… and his dismissal of the question, no doubt aimed at buoying you up, has only introduced doubt and fear.
You should be introduced to a lead nurse (if you haven't already) so ask her/him where you are… they are generally very good and your relationship with your lead nurse will be one of the most important you will make on this journey.
Most questions can be answered here, either by the Myeloma UK nurses and staff via e-mail or at the end of the phone… or by one or more…( usually more :-)) of us on the forum. With myriad experiences and a whole range of treatment, processes and procedures behind us, there is not much that we can't offer advice on (short of direct medical advice which should be directed to the staff).
A guarded but otherwise warm welcome…
Dai.
Hi Mari,
You are right in saying that there are people in worse positions than you and Steve but that has nothing to do with your immediate world when you are faced with the possibility of bad news and the agony of waiting for the consultations that confirm or deny your worst fears.
We know exactly where you are and we know exactly how you feel after going through the same process this last winter/spring. After only 10 months of an expected 3/4 years my light chains started moving up… slowly at first (over 2 monthly consults) and then a significant jump for the 3rd. My consultant was ready to dismiss the first reading but got suspicious at the second and warned us of the possibility of relapse. That last month was… well, what you are feeling now.
I wouldn't give up hope just yet though, not unless or until your consultant gives that warning… keep your hope and your dignity intact until the temporary bad news is delivered… but I hope that that is way into the future and that waves of relief are the only emotions you have to face in the immediate future.
We are all different, with different stories and different outcomes… to treatments and traumas, with failures and false alarms as part of the package.
I wish you and Steve every good fortune.
Dai.
Hi Amelie,
Unfortunately I had a battle to produce enough stem cells for even one SCT… despite five full days on the harvester and two very expensive 'booster' injections during the week. So just the one, which failed after ten months. 😐
But here I am and here I aim to stay for as long as I can.8-)
Dai.
