Hi Eve,
I suppose it is similar to any stressful job where you suppress your angst in order to carry on with the job in hand… your body couldn't afford to have these minor but painful problems before and almost the second the stress is lifted they are allowed to play havoc. Normally that occurs when you go on holiday… many women catch colds.. and the poor men man-flu.:-(
I know that for most the holidays they choose are continual, seeking the sun for a fortnight, or for those with more time, Austrlia, New Zealand, South africa etc., to visit family or just to seek the adventure.
But sometimes it might do just as good to visit Wales, the Lake District, the Cotswolds or Scotland… take a cottage for a fortnight and chill… enjoy pub lunches and light evening meals back at the cottage… drives around the landscapes which in all the places are phenomenally beautiful, either for the gentler hills and vales or for the more majestic drives around the lakes and glens. And the occasional day where you sit in the cottage with the doors and windows open (or firmly closed with a blazing log fire) and just read and doze.:-D
Good medicine all… and the less stress in organising, short haul or no haul, is better.:-)
I am sure that most of your ailments are psychosomatic… you have given so much of yourself and the related worry and stress that goes with it for a very long time… now you need to unwind… perhaps starting with a visit to a therapist for a general workout, or perhaps a acupuncturist (I have visited one, twice over 20 years and each time my problems disappeared after a couple of visits).8-)
You deserve a pamper… perhaps you could treat yourself to a day at one of these health spa's? Either way or any, I am sure that your ailments are short term and could be helped by one or more of the above.8-)
Much love,:-)
Dai.
Hi Karen,
It's good to see that you will be going through your SCT at the City Hospital, Nottingham. It is where I and several others here attend (I live 18 miles from the hospital one way and 12 miles from Grantham the other).
The City Hospital has a first class, purpose built Haematology Centre with a Day Case Unit (Where your stem cells will be harvested) a clinic (where your bloods are taken) and consultants rooms beyond and 2 floors above, Toghill Ward, dedicated to Haematology patients only… and the second floor, Spencer Ward, with 19 self contained rooms, dedicated to SCT patients. 😎
All the facilities are excellent and all the staff highly trained… you will be well looked after. 🙂
Where to you attend for general treatment and consultation?
Regards
Dai.
[quote][i]I know that I have to find my own "normality" but as my kids always said Stephen and I were "joined at the hip" My weaknesses were his strength and vice versa.
He has been dead for 2 months now and I still feel as though part of my body has been ripped away.[/i][/quote]
Hi Gill,
I can empathise with the idea of being 'joined at the hip'.. as you were with Stephen, I am with Janet. Strengths and weaknesses, Yin and Yang… or in our case (if you can recall the TV programme 'Ever Decreasing Circles'), Howard & Hilda. My step-daughters, Kes and Kirstin, kept that nickname going a little too long for my liking… mainly because they were right.:-D
I cannot imagine how it would feel to know that 'part of my body had been ripped away'. And thinking about it I feel sad… deeply and devastatingly sad… because I won't have to deal with that feeling… but my Yang will.
Simplifying it down to the most basic denominator, there was Gill, Gill the Wife and Mother, Gill the Wife and Companion, Gill the Carer, Gill the Widow, Gill. I don't know anywhere near enough of your personal history to write anything more than the titles until we reach 'Gill the Carer' but like all of us, with our titles that defined certain stages or parts of our lives, we adopted and adapted the titles and the roles and behaviours that went along with each stage. So logic tells me that you will go through a stage called 'Gill the Widow', before moving on to 'Gill'… a new Gill with a future unknown but yours to make what you will of it. 😐
But I don't think it really works that way. 😐
You are the sum of your parts… and all those years with Stephen, the love of your life, your conjoined partner and lover, your yang, your head to his tails… that cannot and should not be put into a box and left behind… there cannot and should not be 'closure' on his love and his part in your life… I am certain that when you are ready to start 'moving on', that you will find a way to take him with you.8-)
I have told Janet that if, when I am gone and time enough has passed not to shock the neighbours, she should meet someone else… someone that she feels is 'special' enough to want to form a relationship, even a partnership, that she should do so without hesitation and with my complete blessing. She said 'Thank you, I'll bear that in mind'. Then she looked at me and said 'If it was the other way around, that you found someone 'special' enough to want to form a relationship, even a partnership… I'd come back and bloody well haunt you.':-P
Yin & Yang.;-)
Thinking of you and Stephen fondly and often.:-)
Dai.
Hi Kes,
Hopefully you will have MM for a long, long time (not something you would usually wish a cancer patient). 😉
Like Eva said, you could have MM for 10 years or more… a 5th of your life… it is with you now and it will never go away. There was Kes pre-MM and there is Kes post-MM… the old life has gone and you have to make a new life… based around but not governed by, MM. 😐
It doesn't matter what I say, what anybody says, even if you agree with what is said wholeheartedly… as you have already pointed out. 😐
[quote][b]I will try set myself goals but its making myself do it that's the main problem.[/b][/quote]
There's the rub… making yourself do something… however positive, however beneficial, however life changing… but only you can do it. Let's step back a little here.8-)
[quote]My major problem is coming to terms with the diagnosis I am very depressed & can't think of anything else but the Myeloma at every waking moment !!! …. It has taken over my life.[/quote]
Diagnosed in August… and since then you have been on a Merry-Go-Round of treatment (5 Cycles of CDT) blood tests, this test, that test, poke this, pull that and BTW come to terms that you have a terminal disease without the option. :-0
[i][b]For heaven's sake K[/i]es.[/b]
[quote]Any advice on coming to terms & trying to be as normal as possible would be very grateful. [/quote]
Yes… be gentle on yourself… be kind to yourself… you have just, only just, been diagnosed with a deadly disease. Learn about the vagaries of the disease from this site and ask as many questions as you like on this forum. The nature of MM in the medical world is changing rapidly. at the moment it is a terminal disease… but if enough patients last a total of 10 years or more then MM will be downgraded to a chronic disease… and as far as I can make out from the different boards in America (always a year or so ahead of us and where most of the new treatments are developed) the downgrade is very close indeed… within the next couple of years or so.:-D
If you were telling us that you had come to terms with MM… that you had developed a strategy for living with the disease as part of a new Kes… divorced from the old life and embracing the new… well.I'd say, after4 months, that you were in denial.:-(
But you are not in denial… you are frightened, devastated by the prognosis, dreading the future and wondering how the hell you are going to cope. Good… I am quite happy to declare you absolutely normal.:-D 😎 🙂
It is enough for now that you are Cycling through your frontline treatment. It is good that you have found this forum… with everyone ahead of you an expert in what comes next… a group of friends who will welcome you at anytime… to ask advice, chat about life and the lessons to learn about life with MM… including work, benefits and practical help… and especially the room, space and trust to be able to rant, scream and generally out your fears and frustrations.8-)
The time will come when you will tell us that you have come to terms with MM… that you have developed a strategy for living with the disease as part of a new Kes… divorced from the old life and embracing the new… but then again you won't have to tell us… we will see it for ourselves… and see it we most certainly will Kes… it's only a matter of time. 🙂
But more time than 4 months, that's for certain. You could easily reach that 10 year mark… hopefully much more and you will not be wanting to waste any of that time on negative feelings. 🙁
Welcome to the site Kes – I wish you were not here… but you are… and together we, the whole forum and all these new friends that you are bound to make, will deal with it. 😀
You are not the first to feel exactly like this and you won't be the last… and before you know it you will be welcoming new members to the forum and reassuring them that how they feel now will not be forever.8-)
Be gentle, be kind and take all the love you need to and for yourself. The rest will follow.:-)
Regards
Dai.
Hi Keith,
I understand the difficulties about getting on a Pomalidomide trial…. but how come the Bendamustine? It's not licensed… so there must be a trial of sorts.:-0
I have read extensively about both Pomalidomide and Bendamustine and both seem good with a median of 12/18 months and rising (as all new drugs seem to do…Revlimid had a median of 12 months but is now 30 months… (although nearly everyone on here has failed to reach… the 12 month mark so someone is fortunate).:-|
The good thing about Bendamustine is the Cycle which includes 2 infusions in 2 days I believe… and that's it until the next month… is Dex part of the package? I can't remember.:-/
Good luck with it and keep in touch about the treatment… I get the feeling that they are about to pull the plug on me any time soon… I might get one more but the new year may well be different… especially if Bendamustine is available (it was mentioned back in May) but as I have said earlier in the thread, my consultant was quite bullish about there being no treatments or trials available at the moment… 😛
Regards:-)
Dai.
Hi Keith,
I am looking forward to the results and I truly hope that the prognosis is carry on carrying on… with Rev & Dex… even if it means limping along with little change for good or ill, until one of the licensed drugs from America reaches Europe and the UK for licensing here.8-)
If not.. then what?:-0
My consultant was quite honest and open when she told me that there are no trials, novel agents or any other kind of treatments available excepting those already tried. Which is why I continue on Rev & Dex with my light chains on 423 (125 in July). My other consultant, seen a couple of weeks ago said that this would be my last cycle… but I disagree. While in the Queen's Medical Centre with my DVT & C: Diff (I attend the City Hospital for my MM) I was seen by a Haematologist who said that it was no wonder that my light chains were high (but not that high) when the Rev & Dex were having to try and absorb themselves into my bloodstream through a virulent bug like C: Diff. 😉
She said that we needed to get the C: Diff under control and then give Rev & Dex a clear run at doing its job… unhindered by nasty gut bugs that are bound to be interfering with the treatment processes. It was clear as day to her… a case of simple common sense… so why can't my consultants see that and act accordingly? :'-(
It is to be remembered that it took them ten weeks to call my problems being C; Diff… despite several visits, including isolation in the day case unit.:-(
Anyway… there's no way they are taking me off Rev & Dex without giving it a clear chance to work. 😎 😀 >:-( :-0
I'll be extremely interested to see/hear what they say about your condition Keith… if there is anything on offer or just the kitchen sync by way of previous successful ltreatmnets… or a mix and match… butI hope it doesn't come to that.:-)
Dai
Hi Vicki & Colin
Janet was with me for the Mephalan but then felt a cold coming on which turned into something akin to man flu… either way it meant she could bring in vital supplies to the nurse's station but no further… I didn't want to see anyone else so I set out for my SCT on my own. Janet was declared fit and well the day after my 0.1 so she missed the Lord Mayor's show… and I was so glad she did. :-S
I remember about four days after I'd 'bottomed out'… I was in the bathroom and I looked in the mirror… It looked like someone had put my skin over my head after it had been in too hot a wash… stretched, gaunt, grey… it was a mask that had no signs of life, even though someone was poking and pulling at the mask and making faces to the mirror. I was frightened and fascinated but I wasn't scared. I was in for the long haul and my mantra 'Whatever It Takes' was still strong and vibrant… so fascination won over fear and I enjoyed my face pulling exercises which I held several times a day (in between my SCT Olympic events… which were diverting and highly popular in my out-blog).8-)
Rashes, platelet blips, itches, scratches, tummy upsets etc., are all small distractions… Colin will soon be home and you will be at his beck and call for a few days while he finds his feet and his confidence. After that is when the discipline and resolve has to kick in. Vetoing visitors, watching his diet, keeping his head up with an eye on the long-term prize. 😀
There are no quick fixes, no quack medicines, tablets, herbs or spices… just months of getting better ever so slowly… and by May or so he should resemble a human being of the second order, with another couple of months to full fitness, The middle of next Summer sounds like a good time to be feeling as fit as you have felt for a few years. Sunshine on his shoulders and a smile on your face…. embrace it and go for it. 😎
Regards
Dai.
Hi Vicki & Colin,
It's good to hear you are out of the bed and sleeping in the chair Colin… hopefully it will be your own chair and your own bed within the next few days or so. 😎 😀 🙂
You need to draw up an action plan for when you get home… who is allowed to visit, where you want to make your base for daytime hours… (I had/have one of those tables that swings over the bed which is both very useful for food and drink etc. but is big enough to take a laptop as well). I also have an electric recliner (brown leather… I wish I'd gone for a hard wearing cloth… but there you go). I found that I could spend anything between 2 and 4 hours in the recliner before the need to stretch out properly called me back to bed.;-)
David (Perkymite) and I both had the same idea and I banned all visitors for the first 2 weeks (David a little longer as I recall). People think that they are healthy and germ-free but if they go to work etc., there is always the risk that they have been in contact with others who have colds etc., coming on… I just didn't want to take the risk… and after 2/3 weeks I felt much better… at least more confident about seeing people.:-D
Take it easy, take it slow… don't let yourselves be pressurised by others… you will thank yourselves in the long run.8-)
Take care… I hope it's good news tomorrow.:-)
Regards
Dai.
Hi Jo,
3 years 6 months from your CDT alone… that is impressive.:-D
I have said on here many times that my biggest regret of my treatment was not holding out for my full remission from the CDT treatment. 🙁
My consultant said it was 'a no brainer' to go for my SCT after my CDT but due to my Hickman Line infection which made me Nuetrpenic for a few weeks and messed up the timings for my Harvest but after 6 months I was still in 100% remission from my CDT and feeling healthy and well with very good mobility (after arriving from Wales 10 months before wrapped in 2 duvets and having to be carried from the car into our new home where I couldn't walk more than a few yards at a time). My light Chains were at 3,500 and the CDT cleared them down to 0 after only 2 Cycles… I had 4 Cycles in all and felt like a new person.8-)
I wanted to wait for the CDT remission to show the first sign of relapse before going through the harvest and SCT but as said my consultant wanted me to have my SCT straight away… who knows? I might not have got 4.5 years but a year to 18 months would have done for me, seeing as my SCT only lasted 10 months (after the Prof gave me a prognosis of 3 to 5 years)… so regrets… yes indeed… but I didn't know what I know now and Janet's face when the consultant urged for the SCT swung it for me. 🙁
I hope that Velcade works well for you and gives you a remission to match your CDT treatment.8-)
Dai/
Hi Sue,
I can easily understand and empathise with Michael… I always feel on the edge of a panic attack when Janet leaves me at the hospital. Silly as it sounds but every time she comes in from shopping or when she has been babysitting our two Grandchildren etc. my heart skips a beat… it's ridiculous but I get a warm feeling even when she returns from making a cup of tea… it's a gut reaction, totally outside of my control.8-)
So I can feel for Michael, waking or just being overwhelmed by your absence. He knows the score and is coping very bravely with it too… but he must fear going without you near and that sense of knowing, combined with the sense of panic can easily spill over into a full panic attack and the only pacifier would be to see your face, grab your hand and hold…:-)
I do hope you get him home within the next 24 hours… he will no doubt calm down for being with you at home… and even if he does break down from time to time you will be there for him and that will be enough.
My thoughts are with Michael and also with you.:-)
Dai.
I imagine this last year has been very hard indeed… and you still have your husband's cancer to deal with… is he in remission or still on active treatment?
Your Mum did well given her age and not qualifying for a SCT but that is of little comfort when you have to deal with the grief of her passing.
I hope your family manage to pull together with love and fond remembrances at this time.
Regards
Dai.
Hi Keith,
I have always had rather sensitive gums and have always used the softest bristles available.:-P
I too have had bleeding gums a few times in the past two years or so… but I don't recall if I was on treatment at the time… probably rather than possibly. An extra flurry of mouthwash regimes has cured it every time so I didn't report it as an ongoing problem.:-)
You should consider ringing in and reporting it as a problem… ask about the platelet transfusion, telling them that it is bothering you and causing you concern… so on Monday you could look forward to positive action rather than just raising the problem then… because leaving it with them on Monday could easily stretch it for another week or so.:-S
Your call… but I would make it if I was in your shoes. 😎
Dai.
Hi Kez & Mel,
That sort of pain is both excruciating and very wearing… I know because I had similar pain accompanied by nasty spasms where I felt I could tear phone books in two! But the pain can and will be sorted… by short term high pain relief and a continuation of the lowering of Mel's PP's. 🙂
The pain apart, everything else looks positive with a drop of 18 PP's from 55 to 37… that is very good and going in the right direction. A similar drop would see Mel's PP's at around the 20 mark… very close to plateau and then hopefully 0. 😎
I can understand that the pain, which is both immediate and dominating, is the main concern for both of you but beyond that the prognosis is looking pretty good. So press for the pain relief and then prepare yourselves for the long haul… I am sure it will be worth it. 🙂
Dai.
Hi Sue,
Thank you.:-)
We can only hope that Michael will respond to the AB's enough to get him home. I have been there enough times to know that the medics can usually find something that will work… and although Michael's position is substantially different these modern AI's are incredibly good.8-)
Every time that I have been in I ensure that Janet leaves in time to get home before it gets dark. She has a macular problem (not degenerative) that makes each lamppost seem like a full beam and each full beam like a floodlight shining directly into her face, so driving in the dark is highly unpleasant and we live 20 miles from the hospital.:-(
I nag her to ring me as soon as she gets home. Like you she locks the door and turns up the heating… the only difference is the G&T. Alcohol and Janet don't mix… anything beyond 1 G&T (which she likes) or a single glass of wine and she heads for a migraine. She hasn't had any alcohol (apart from a glass or 2 over Xmas) for almost four years and she has only had 2 migraines in that time, so she considers that it is not worth the risk and settles for a cup of tea. She goes to bed after having a bite to eat and watches TV on her iPad. She rings me when she is ready for sleep and then I feel that I can settle down too.8-)
I hope you enjoyed your G&T and that it helped you find some decent sleep.
Loving regards 🙂
Dai.
Hi Eva,
Thank you for your kind and supportive words.:-)
I am both appreciative and enlightened by your post… here is my position as I understand it.
I am not neutropenic as yet (Neutrofils 1.6 – the lowest in a while with an average of 2.0). I have been concerned by my low HGB (average over the past 4 months about 8.8… but I am certain that that is as much to do with my C: Diff as with my MM. The impression that both Janet and I got from my consultants remarks (about the availability of further treatments) was that there was nothing that the NHS could offer at the moment… that they were restricted to licensed treatments only… and that the next obvious steps of either Bendamustine or Pomalidomide were not available because there were no trials currently on offer. Her frustration shone through, so I don't think that it was a case of personal circumstances… but I will definitely get a clear position on that score at my next consultation.8-)
This battle with C: Diff has been a tad horrendous but the next few weeks should give me a better position as I finish my course of Vancomycin which has been interesting to say the least. I have had no discernible side-effects and the course started out full pelt and has worked on a weaning process with less than 2 weeks to go.
Briefly I was on 4 times a day for 10 days followed by weeks of 3,2,1, 1 alternative days, 1 every 3rd day, then 1 to finish. I am now on the 1 every alternative days… so just over 10 days to the finish… (6 actual tablets left to take) which will coincide with my Rev rest week. 🙂
I am going to push for 1 more cycle of Rev and Dex… free of C: Diff treatment, to see if the absorption of the Rev makes a difference to my Light Chains. That of course entails the C: Diff being held at bay by the Vancomycin treatment but therein lies my hope. The Free Light Chain test is taken minutes before the consult… so I am going to request the test be taken 10 days before the following consult (in January) to give the results a chance to be ready. At one time the tests were done at Nottingham and were back within 48 hours… but now they go to Birmingham and take between 10 days to a fortnight to return… but I am sure a little polite pressure could be applied.8-)
So that is where I am at the moment… I am hopeful but wary.
Thank you once again… your concern and advice is truly appreciated.:-)
Dai.
