Hi All.
I have had friends and acquaintances who have come along behind me since my diagnosis and they have died without ever having the chance to acclimatise to the fact that they had a life threatening illness . One particular friend found out that she had advanced cancer and died within three weeks… and another who had a heart attack and died in the ambulance on the way to hospital.:-(
MM is a strange and somewhat cruel form of cancer inasmuch as you are told that it is a terminal disease but that they can knock it back several times before it finally claims you. So, if you follow the pattern you will receive several forms of treatment, hopefully providing you with periods of disease-free remission where life feels fairly normal… until you relapse and move on to the next phase of treatment.:-|
That's the 'norm'… but there are always exceptions , as seen recently with our good friend Paul who developed an infection with low neutrofils and was not able to fight back… if the 'norm' doesn't get you then infections will.:-(
So yes, MM is a stressful disease to live with for the carers… and MM is a stressful disease to die with for the disease bearers… but the nature of the stress is two-fold. On the one hand it shows the possibility of years of life ahead of you from diagnosis (3 to 8 seems to be the median) on the other there is the possibility of infections and complications that can get you even when things seem to be going reasonably well. But we have a choice.8-)
We have the choice of making the best of the time we have before, during and after treatments… relapse is always a great shock and has the effect of being an awful reminder that ending of each stage brings the end nearer… but you pick yourself up and you move on. Of course this a stressful way to live… but we are living… and the next stage will afford some quality of life… more time with loved ones… and some kind of normality.:-)
If people need counselling then all well and good… go to counselling… personally I would rather concentrate on living… as best as I can, for as long as I can… and hopefully make peace with myself and my loved ones and family before I go.:-D
My daughter got married ten days ago… she brought the wedding forward a year to make sure that I could be there to give her away… the day went swimmingly and I was proud to be able to be there for her… but there was also a small bubble floating above my head that said [b][i](it's alright, you can die n[/b]ow)[/i]. A bit of gallows humour but also a small element of truth as well… not that Becky would ever allow such a thought to be considered but bringing the wedding forward was a definite intention to beat MM to the draw.8-) 😀
Perhaps Janet has these periods of stress where she just wants to scream and cry and let fly… I can't deny that our lives are sometimes uber-stressfull because of MM but it depends how you choose to deal with it. Her, our preference, is to get close, shut out the world for an hour, day, week and do normal things… watch a couple of films, read, be creative with crafts (Janet), be creative with music and words (me) and wait for the current small crisis to burst its bubble and then take heart and saunter on. If the crisis involves being hospitalised we assess the seriousness and act accordingly… putting family on alert (from mild to serious) and going with the flow… adopting the attitude of 'Whatever It Takes' and allowing the medics to do their jobs.:-) 😉
People must deal with the outcomes of MM in their own way… deal with stress as you see fit… but allowing it to become an enemy is, for me, not the way to go. MM is a horrible, cruel disease to have to bear with… but it also allows you time enough to make some sense of your lives and it gives you time with your loved ones that is denied to so many other cancer patients. Screaming and crying is fine… as long as the screaming and crying is not a form of denying… denying the fact that MM is terminal… denying the fact that one will have to go and one will have to stay… and it seems to me that the worst stress lies with those who have to stay… because they have to watch and wait for their loved one to die before having to bear the loss and grief and picking up the pieces.:-(
Janet will go through all that, I'm not a fool… but she has decided that she will bear that when it comes… and I am not to worry too much about that process. She wants me with her and as happy as we possibly can be until I go… and that will do very nicely for me.:-D 😎 🙂
Sorry for the ramble.;-)
Dai.
Wishing Colin the very best of luck in getting a smooth a ride as possible through his SCT. There's not a lot you can do from this point now Vicki, apart from keeping him company (there will be lots of silent watching, reading, dozing etcetera from the both of you) and making him as comfortable as possible. From about four days in until he spikes or produces the magical 0.1 it will be anything from mildly unpleasant to one thing after another… but nothing he can't put up with. Once you 'bottom out' you feel like a skeleton with little to no energy… taste buds and hydration kaput and all you want is distractions and sleep.:-P
We all go through the Welsh/Irish Rugby Full Back stage (Dai O'Rear) to some extent or other but all the other little nasties (sore throat, nausea, rashes, cracked lips etc., etc.) are optional… some get the lot, some escape them all (I was fortunate… none of the nasties and only 2 days on the pitch).:-)
The good thing is that it really does seem to go very quickly. Janet caught a cold on the day they gave me my Mephalan and she wasn't well enough to visit me until the day after my 0.1… (she called into the ward nearly every day with supplies, fresh jim jams etc., but our SCT ward at Nottingham is made up entirely of ensuite, single rooms so while she could call in to the front desk (complete with mask) she couldn't visit… and to tell the truth I was rather glad, because although I had a pretty smooth SCT I looked like Skeletor, complete with grey skin drawn tight around my face and neck and I know how much it would have upset her… with daily visiting you don't notice it so much but the occasional visit would make the change far more dramatic.:-/
That's the SCT for you really… looking and sounding far, far worse than the actual experience.:-D
All the best and here;s to 0.1 and full recovery, followed by a long and happy remission.8-)
Dai.
Hi Chris,
Once the Stem Cells are back in it is only a matter of waiting to zero out and watch the daily bloods for that magic number of 0.1. In between times it may get a little rough but it is worth bearing for what it brings.8-)
I wouldn't worry about the eating side of things, get down what you can but drinking is important… otherwise the will fix you up to a drip for fluids… which can cramp your style, especially when you need the toilet… so drink as much as you can… that's a No. 1 tip.:-)
Distract yourself was much as you can through TV, Games, Blog etc., and don't avoid sleep… of you feel it coming on don't fight it, go with it and generally go with the flow… 0.1 will be with you before you know it and home a day or two later where the recovery will begin in earnest.8-)
All the best and regards:-D
Dai.
Hi Andy,
Your bloods look quite good except for your Nuetrofils… got to get them up sharpish.:-)
HGB 10.4 is a luxury to me… I normally have to settle for 8.4 to 10.0.:-| But my Plates are usually around the 140 mark, so no trouble from them.
I would love to have a go at an allo… risks allowed for and accepted… but I doubt that that's an option for me now.:-(
Still, you are moving forward… from failing to get inside the parameters for a SCT to the offer of an allo… whatever happens I am sure that before you know it you will be home and on the long but desirable road to recovery… and the sooner the better.;-)
Good luck Andy… if anyone deserves a bit of good, positive fortune it is you.8-)
Dai.
Vicky,
I have followed your Dad's progress and grew concerned that they took him off all treatment until they got his infections under control… that didn't sound good from all that I have seen, heard and learned during my 4 years on this board.
I feel for you and all your family, especially your Mum. I am sure there will be others along shortly, especially som of the MM widows who will be able to offer far more wisdom and advice regarding the process of grief, although I do know that that process can be so different to different people.
With deep regard to you and yours.:-|
Dai.
Hi Lorna,
I don't feel cheated, just immensely saddened that our time together has come to be a countdown through the various stages of a terminal disease, rather than a slow but happy decline through old age. But then again I know of so many people only a few years older than me (59 on Xmas Eve) who have suffered from heart disease or other forms of cancer, including brain tumours who have all died since my diagnosis of MM, while I continue through my stages.:-( I can count 6 who were either close friends or very happy acquaintances.
And then there are those, in the same age group (60 to70+) who have succumbed to alzheimers or age related dementia (one as young as 56). There are of course a few exceptions… I have friends in their 80's who are still actively together in their own homes, in reasonable to good health, enjoying life to the full… but they are exceptions… most of my elderly friends have a partner with health problems, a good percentage in care homes with age related dementia… they, for me, are the hardest to bear… it seems that only a year or two they were the life of every party… and every drop in visit somehow turned into a party.:-)
Before moving up to Nottingham for the quality of facilities and treatment we had a historic pub and restaurant in Fishguard, Pembrokeshire, West Wales… with a wonderful group of staff, nearly all still in touch through Facebook and although the mainstay of customers were visitors and tourists our local clientele were mainly 35 to 75 and enjoyed leisurely lunches and evening meals where we got to know them quite intimately.
I also ran a publishing enterprise 'Dragon Tales Wales' where I took the bones of Welsh folktales, rewrote them with characters and dialogue (from 400 words to 8,000) and then took them into the studio where I turned them into a series of short talking books. Once fully established we were going to give up the licensed business and concentrate full-time on 'Dragon Tales' based in Fishguard, adding to the portfolio mine own works and those of other local writers of great talent and the most wonderful set of local stories. I even had a well established local writers group, 'The Acorns Writers Group' (The pub was the 'Royal Oak') that still meet every Monday. 😎
I had a Irish music based Folk Session every Tuesday with their annual 'International Fishguard Folk Festival' now in its 12th year, that takes over the whole town, (every May Bank Holiday for 4 days) sea shores, the local theatre for the formal concerts (ticket based but every thing else is free) and almost every pub has a session going on, organised and spontaneously, mainly based at the "Royal Oak' complete with Marquee in the large beer garden looking out over lower Fishguard and the old quay, with the modern (1901) harbour over to distant left and the 'Old Fort' complete with 18th century cannons sitting on guard over the 'Lower Town'… the setting for the Richard Burton, Elizabeth Taylor and Peter O'Toole (as Captain Cat) in 'Under Milkwood' during the 70's. (Moby dick was also filmed here in 1952 – my father's claim to fame, he was then 23, was that he was an extra in quite a few scenes.8-) 😉
I also provided live music on Friday and Saturday nights (quite often myself and a friend or two during the quiet months of winter). We held a weekly pub quiz (League in the winter, local hospice charity during the summer) and often played hosts to the RNLI after their weekly training stints (Both Janet and I have had the honour of skippering the boat out at sea… a full 20 minutes a time.8-) Many of the crew used the oak as their local (I had won many awards for my 'Real Ales' so perhaps that was the main attraction).;-)
So I have much to miss… many friends, colleagues, the town woods, mountains and sea, especially the sea. My 'Dragon Tales' lies frozen… with lots of CD stock… although I have completed my first full novel 'Hexicum' (160,000 words) since moving here and I have started my second novel 'Birth Of a Wiseman' which I am determined to finish before Xmas.:-P 😉 I also have summaries for 4 other novels… how many get finished is out of my control, although I will be trying my hardest if I can scape another year, 🙂
I was brought up in Fishguard… left, due to my parents divorce and my Dad's determination to make a new start in Nottinghamshire, when I was 14 and finally returned when I was 40… and was forced away thanks to MM when I was 45.:-(
If I do feel in the slightest bit robbed it is in being forced away from that life to one which is 70% sedentary, based on songwriting and my novels… but being at the whim of infections and other side-effects (apart from relapses never actually MM) my doing plans are often shelved or put back for another day… such is life with MM.:-(
I hope your sense of being cheated does not impinge too much on the here and now… there is still time to talk and do so many things… talking about things that would normally be shelved as too intimate, too telling and doing things that please you both, being answerable to nothing and no one… simple things with little expense and people too see and places to go… even to that man about that dog. 😉
I wish you both well and freedom from anger… if you are not angry then there is time and space for other emotions… far more positive and far more healthy.8-)
With best and warmest regards.:-)
Dai.
Trying times, and I should say a little hysteria is quite allowable given the circumstances.8-)
Still, the week will fly and the 'force them back in' expert will come and do his job and Colin will be on his way… finally.;-) The best of luck and it will be over and done with and he will be home in your capable care before you know it.:-D
That's when the important part begins… David's advice is perfect and close to my regime. Family and friends will clamour… gather the strength to say no… especially for the first few weeks.:-|
Regards and best wishes.:-)
Dai.
One of my favourite poms… and the one read by Gill at Stephen's celebratory funeral:
[b]Warning[/b]
When I am an old woman I shall wear purple
With a red hat which doesn't go, and doesn't suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we've no money for butter.
I shall sit down on the pavement when I'm tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people's gardens
And learn to spit.
You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.
But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.
But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.
[b]Jenny Joseph[/b]
Hi Joanne,
Platelets play a major part in the fight against MM. Alarm bells ring when they reach the 30 or below mark and this is normally treated by a platelet transfusion (they look like a grey tapioca):-) .
When you next attend the consult ask for the hard copy of the blood tests (the consultant will have them on the computer).:-| You can use these print outs to compare and contrast each test… but you need an abc of blood components to understand the readings better.:-)
While all the categories can be confusing you really only need to keep an eye on 4 main categories… namely:
WBC: White Blood Cells
HGB: Haemoglobin (Red Blood Cells)
Neutrofils: Governing our Immune Systems
Platelets: Basically platelets, a very sticky substance, allows blood clots to form as a protection when everything else is dropping into the danger zones. For a full explanation of platelets and other blood components: Go to:
http://www.fi.edu/learn/heart/blood/platelet.html
This heart based site gives an excellent and easy explanation of the various components of bloods. Highly recommended.8-)
Hope this is of some help.:-D
Dai.
Hi Rachel,
I have just finished reading through some of Paul's posts – always honest, aways supportive, always looking at problems from a 'half-glass full' perspective.8-)
I laughed aloud at his first 'Dex' encounter where he went slightly ape when he couldn't find the Pears Soap in the bathroom. My 'Dex' moments tend towards the trivial things in life too. The big things are taken in your stride, face to face with no backing down… but no Pear's Soap… that's beyond the pale.:-0 😉
God bless you Paul.. you will be… you already are… missed.:-)
Dai.
Hi Pat,
My experience was very similar to Sarah's… form at home, on to my GP and Badge in the post within a week. My renewal was a very similar process only this time we had to drop the form into a local council help point where they rubber stamped the form and the new badge arrived within 48 hours. Easy Peasy.:-D
You still have to pay at our hospital in the main car parks but there are plenty of reserved parking spaces for Blue Badge holders… usually within a 100 metres of major clinics and entrances.:-)
It is a really useful scheme and well worth pursuing, even if you are capable of limited mobility.8-)
Dai.
Hi Keith,
Let's get this right.
[b]HGB: 8.5
Nuets: 0.6
Plates: 32[/b]
and they offered you a blood transfusion and you refused.
However well you might be feeling IMHO it's a dangerous game you are playing Keith.
OK…HGB 8.5 is on the cusp… but it's not settled, its dropping. The same with your platelets which continue to drop to what I see as a level that should be causing concern. But your Neutrofils at 0.6, dropping from 1.8.to me is a major cause for concern. The flag goes up and the alarm bells ring whenever our Neuts drop below 1.0 qt our place… one silly cold, one trivial cough etc., and you could be in mighty trouble my friend.
However simple the ailment you will have nothing to fight it with and nothing to keep it from escalating… all for a matter of 6 hours or so, in relative comfort, with nothing to alter the status quo except by way of general improvement, by receiving life affirming blood.
My fingers and toes will be crossed for you until after your Zometa and the bloods that follow. If the readings were stable, or moving slowly upwards then I wouldn't be so concerned… but yours are dropping quite dramatically [b]while you are feeling good[/b].
Can you reconsider? And what does your consultant say? A nurse's say so because you have convinced her you are feeling fine is hardly a considered medical appraisal.
Me? I'd be shouting for blood, platelets and close monitoring of my Neutro's from a hospital bed… really!
Dai.
Hi Megan,
Unlike Keith who settled for PN Lite I decided to go for the whole MM experience… PN Heavy feet, complete with 100% pins and needles, painful to touch and feeling cold even when they are doing their impression of an old fashioned radiators. I also have slight PN in my hands but thankfully, (being a guitarist) nothing near as bad as my feet (and legs between my ankles and calves).:-S
My PN started with the thalidomide in my frontline treatment (CDT) but really became affected during and after Velcade… I was told it would settle down after Velcade but someone fibbed.:-(
There are certain drugs (low dose amytryptilline) that can help alleviate the symptoms but as far as I can gather once bitten you stay bit (depending on the severity of course). I would say that my PN runs at about 80% *pretty bad) but like my tinnitus I tend to shut it down and almost out for most of the time. I had a DVT in my left leg last summer (2011) and I am currently sporting a DVT in my right leg this autumn… combined with my PN they make walking an interesting pastime but I can still get around without aid.
MM has some nasty side-effect and some that are a damned nuisance… for me PN is a damned nuisance… but only when I'm feeling down or feeble – the rest of the time you learn to block it out.
Regards
Dai.
HI tom.
Thanks for being well informed… Sian is lovely and she also has a country pub with accommodation between Hereford and Hay-On-Wye 😎 .
The news about Paul was posted in the Under 50's… you will find a post from his wife there.:-(
Dai.
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.
