This topic contains 39 replies, has 13 voices, and was last updated by 
tom 11 years, 11 months ago.
Hi Sue,
It's 1:30am and I came on board for no reason and every reason. Sometimes I just want to stay away and concentrate on my own condition and my own problems… I have enough to be going on with that's for sure.
But then again I also realise that I have made my commitment to this board, in good times and bad, to share, support, ask for help and offer help where and when I can.:-|
You and Michael have been on and to the forefront of my mind for the past few days. I was in for the day to receive 2 units of blood on Tuesday… 2 units to 'buck me up'… my saying because although my HGB had dropped to 8.6 they don't normally offer blood until I drop under 8.0. It was a totally unexpected 'gift' from my consultant on Monday and I gratefully accepted the boost.8-)
There were only 3 of us in for blood… the schedule had 6 down for treatment but for one reason or another 5 had dropped out… leaving 2 members of the Haematology team of nurses for the 3 of us.
I sat down on the chair at 10:00am and got up out of it at 3:15pm… Janet saw me comfortable and then went shopping… specifically to a Husqvarna shop we had spotted in Nottingham. A sewing machine shop fills her with the same frisson that I get from a music shop, so I knew she would be happy for a few hours.:-D The other two 'customers' slept for most of the time and although I did doze for 30 minutes mostly I just read from the Kindle on Janet's iPad or just let my thoughts roam.:-|
And my mind turned to you and Michael… the latest in a line of cyber friends to have reached this 'waiting' juncture. Some of us succumb to infections… others to palliative care at the end of the line with no more effective treatments. I became painfully aware of your condition… of your state of mind as you wait… and then I thought of Michael and his condition and his state of mind.
So there I was… Janet out shopping, me receiving a boost of blood… and both of us would return home at the end of the day for supper and TV and whatever the tomorrow brings. My light chains continue to rise and I live in hope of the Rev & Dex managing to bring them down now that they seem to have brought my C: Diff under control… I live in hope but I truly don't know if it will work… If not it will be the end of Rev & Dex with nothing currently available to replace them. Either way I know that I am on the road home… and I will either succumb to infection or be introduced to palliative care at the end of the line.:-|
For now I can think about my novel… write a few songs, play guitar and push MM to the corner of my mind… while Janet can wait for her new Husqvarna parts to be delivered, carry on quilting and enjoy her mastery of the iPad.:-)
We can wait… for a little leeway of hope for newly licensed treatments… and we can wait for a whole jumble of small 'this and thats'… but for now… for now we don't have to wait for the end.:-|
Our thoughts are with you and with Michael… I urge your Guardian Angels to be with you and to stay with you for as long as you need them.
With loving regards:-)
Dai & Janet.
Dear Sue,
I'm so sorry about what you are both going through. I'm glad that you will have some support from nurses when Michael comes home. Don't hesitate to ask friends for help- meals, cleaning, whatever….. People may keep away because they don't want to interfere. If you wish to be alone but the stress of the situation makes daily tasks difficult, then friends could drop things off for you.
Some in Michael's situation might wish to take one day at a time and aspire to whatever is the closest thing to normalcy; others might need to talk about various issues or share memories. You will know what Michael needs. It might be an idea for you to have a bit of time each day talking to a friend on your own, trying to recharge your batteries so you feel stronger. Whatever happens, I'm sure that Michael will feel much loved and well cared for.
Eva
Dear Dai,
I just wanted to say that I have admired how you have been a source, not just of analysis, but also of encouragement for the members of this forum, even at times when it hasn't suited you. You've expressed generosity and I'm sure integrity as you've displayed characteristics that have probably been central to your identity throughout your life. There may be times when you do need to withdraw however and look inwards or marshal your energies in different ways.
I know it's not up to me to comment on your treatment but I have been speculating about it. I don't really have a clear idea of the toll that the treatment has taken on your body. Yes, I know you're neutropenic and that your light chains are rising. The body is a complex ecosystem and there are many other parameters. When your onc/hem tells you that there are no more treatments I wonder what that really means. Has your system been nuked by the meds to such an extent that you couldn't possibly stand any more interventions? Or is the decision based on other factors? I may be shot down in flames when I say this, but I believe that the NHS probably has a flowchart which gives docs guidance on likely treatment paths and the order in which they occur. The rationale for this 'guidance' might include concern for patient safety and well-being, as well as financial constraints. Depending on the region and on the individual doc, there is probably a degree of leeway, a space in which judgement can be applied. For example, if a patient has severe neuropathy and is on Thal, they might move on to something even though they haven't fully exhausted all the potentials of that particular medication. Treatment pathways don't have to be adhered to robotically; the degree of conformity might sometimes be linked to the nature/philosophy of a particular doc as well as their immediate superiors, in addition to a rational assessment of what a patient might respond to at a point in time. Dai, if you've been reading the myeloma listserv where there is a larger patient group writing in than here, you probably have a good idea of just how various treatments can be. Is there a reason why you cannot be offered bendamustine? Are two or three combos out of the question? Does it have to be as linear as it appears? And if you went slightly further afield, would you have the same outcome? I believe it is never too late to ask for another opinion, even if you have a superb relationship with your onc/hem.
I haven't made these comments in order to make you feel that you have to find the 'perfect' treatment – no-one can do that, but I know that you're very analytical and I wonder whether you've been 'chewing' on these issues.
Thinking of you,
Eva
Dear Dai
What an amazing person you are I cant imagine what you, any of you MM sufferers, are going through I can only see through the eyes of a carer. But you are always there to offer support and I admire you for that. Janet must be so proud of you.
Just back from the hospital seems a long drive in the dark, Michael doesnt seem as well today, they are still pumping antibiotics into him, no sign of him coming home yet.
Doors locked heating turned up, at last I can be me, good old cry and perhaps a gin and tonic
Good Night god bless
Suex
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.
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 Dai,
Have you studied Myeloma Uk clinical trial tracker?
What about PAD? I've already talked about this before, but might your consultant consider Rev plus Biaxin or Clarythromycin which is another name for it? It's a cheap antibiotic which has in some trials apppeared to have lengthened remissions with both Thal and Rev. If you google it, you should find studies and might need to show them to your consultant. I'm suggesting that this antibiotic could be used off- label.
If you go for a second opinion try someone in London who sees many patients.
You could even talk to them on the phone and ask if there's any chance of other meds. In the past, some patients got meds under 'special circumstances.' Gay and Patrick did, I think. I don't think you've got anything to lose by looking around a bit – unless you are at peace with
your current treatment plan.
Eva
Hi Susannah and Michael
Just to let you know that i am still rooting for you. Do hope the antibiotics are beginning to do their job and that Michael can be home soon – there is no where like it.
I guess all of us MMers think about our end, from time to time and wonder which way we will go. I am sure we all hope and pray for a gentle release with our dear ones with us, but not too soon! I hope and pray that for Michael too.
Take care of yourself. Like all our carers you are very special.
Lots of love.
Mavis xx
Hi Eva
How do you get on the myeloma listserve? I haven't heard of it before,
Lots of love.
Mavis x
Hi All didnt drink my G&T, actually Dai Im a bit like Janet I dont very often drink as I to get migraines Its probably a good job as I had a phone call from the hospital Michaelwas having an horrendous panic attack tried to calm him overthe phone but he was in such a state so they asked if iwould stay with him and that they would make up a camp bed for me. Since we were given the bad news we havent spent much time alone, he ended up in hospital after 2 days and yesterday so many different people were in and out of his room he just couldnt cope and I think it finally hit him. We talked nearly all night michael fell asleep about 3 oclock, I didnt get any.Stayed all today very peaceful and he seems much better. His consultants saw him this evening and put him on oral antibiotics and some antidepressants,and said he could go home tomorrow. So ive just arrived home and im going straight to bed to hopefully sleep
Love Sue
Hi Sue
Couldn't sleep well last night – unuisual for me, so was thinking and praying for you and Michael a lot. Do hope Michael is calmer now. It is a time when he could naturally feel frightened. Hope you are able to spend time with him, – and perhaps other members of the family. Is it your daughter in the photo with you?
Lots of love to you all – and all blessings at this most difficult of times.
Mavis xx
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.
Hi Sue
If it is any help Sue,Slim had panic attacks when in ITU,and of course I was not there,and I was there 20hrs out of 24.made me feel awful,but he did say to me they were bad dreams,and we did talk about them after he came home.
So glad to hear he is coming home,make time just for you and Michael,you will need all your strength in the coming months,my best wishers Eve
Hi michael home hes very tired but much calmer. You are so right Dai Michael is much calmer when Im around,even before MM we always did things together,perhaps it was the other way round then, I relied on him so much, but that is what you do when you love someone.
Hi mavis yes thats my eldest daughter Emily shes 32 not married or even have a boyfriend at the moment, so if you no any nice young men!
love
Sue
Dear Sue
I'm sorry to hear about Michael, it must be so hard for you all. I do hope you have lots of support at home and can make the most of your time. love Helen
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