Hi Tom,
My veins are a nightmare to find, you can see the nurses in the Day Case suddenly finding themselves very busy with other things when I am shown to a chair. 😀
There is a Chinese male nurse called Jeff who is 'bigged up' by the other nurses and he usually accepts the challenge and finds a way in… yesterday it was Liz, the first nurse to treat me when I came to Nottingham City Hospital in the summer of 2009… then she was a trainee but is now a hardened regular and she got one first time and I was cannulated in less than 2 minutes… several nurses popped across to have a look which I would have found insulting but Liz just gave an innocent smile and carried on regardless. 🙂
When it came to taking it out Liz was on a break and the nurse who took it out called over one of her colleagues to have a look… the end of the 'needle' was into the vein by a cat's whisker but it had worked and that's the only thing that matters. One more vein to catch next Tuesday and then 20 days rest before the next one. 😎
Doing the song was fun… Greg sent me the lyrics and asked if I was interested in putting it to music… he suggested a half-spoken, half-sung format but left the final decision to me so I went along with his suggestion and this is the end result. BTW [b]All[/b] the sound effects are me… including the howls.8-) Morris was still alive then but while he had a decent bark he couldn't howl for toffee but watching him as I recorded the howls was hilarious… he got really worried bless him. 😛
Dai.
Hi All,
Just got back from the Day Case Unit where I had infusion 1 of Cycle 3… infusion 2 to follow next Tuesday. Everything went smoothly, the nurse found a vein and captured it first go… we all kept an eye on it, checking and double checking as the saline wash went through, not quite believing that it could have been that easy but it was and everything else followed in the same pattern and now I'm home and looking to have a couple of days rest as the Bendamustine starts doing its job.8-)
No FreeLite results in as yet but I have a blood and consult meeting next Monday so perhaps then.:-)
It was good to meet up with Nicki(noo) and Sam in the waiting area as Sam waited for his Velcade infusion… the first meeting with a MMUK for nearly 2 years. We had a good chat about treatments and were moving on to other things when I got called through but Janet stayed a while before joining me.
Just one bit of advice for Nicki… Don't forget to be be happy… and here's the link I was talking about… good luck with the sausage dog. 😀
Dai.
Hi Tom,
I was advised by a MacMillan nurse to apply for DLA because of my limited mobility and extensive bone damage. I put in for it expecting to get the lower rate but they gave me the higher rate and a nice new car.8-)
From what I can tell the DLA is mostly a mobility based allowance… if you qualify they give you the full allowance but there is a lower allowance which is granted to those mobility is affected either by disability or illness… such as MM.:-|
I would like to say it ain't so but I can no longer put on a pair of socks or lace up shoes and while I can dress myself it can take a long time with some Dex like sound effects. Once I am dressed and sitting in a chair I look a picture of health. 😀
Dai.
Excellent news Liz… I bet Kev feels much better just knowing that the treatment is working and working so well at that.8-)
I missed my second infusion of Cycle 2 and had to make do with just the one (infusions are set for Day 1 & Day 8… no swapping or changing, its either 1 & 8 or nothing). My light chains were at 525 when I came off Revlimid but 6 weeks later when I started on the Bendamustine they had shot up to 2,400. We got the results of the FreeLite test after Cycle 1 and the light chains had come down to 880… so it showed that the Bendamustine was doing its job. 😀
As above, I only had 1 infusion in Cycle 2 but I am still hopeful that the treatment is still working and I am hoping to see some evidence of that when my latest FreeLite test comes back… whenever that is.:-/
Still, being positive and hoping to get my light chains down there with Kev's… Day 1 of Cycle 3 on Tuesday Neutrofils allowing, so fingers crossed.:-)
Dai.
Hi Sue,
As Maureen said, you did everything you could for Michael and although you must have felt helpless these last few weeks you and your daughters were there for him and you were there until the end.
Now it is your time. Time to allow the shock and the loss, time to grieve and time to grow into whatever you want to be. It won't be easy and each of these stages will take as long as you need them to be.
Please remember that we are here for you… especially people like Tina, Gill, Min, Sarah and those others who have also lost their husbands and best friends in the past couple of years. When you feel strong enough talk to them, please do… and take up Tina's offer… everyone is different but there are so many commonalities too.
As for the rest of us, it would do us the world of good if you could pop in now and again to let us know how you are getting on, for good or ill.
Bless you, you are in our thoughts.
Dai.
I too had heard very good reports so I asked a Doctor who was treating me in the Day Case Unit (for a suspected DVT) and he said that he personally had one and would recommend it… so I bought one. It arrived from Amazon and I tapped it and unwrapped it, eager to use it and, yes I know I am letting man-kind down, I read the instructions on the side of the box before switching it on. :-0
It said, in bold lettering:
[quote][b]'Do Not Use If You Have Or Have Previously Suffered From, A DVT'[/b].[/quote]
Thank you Doctor. It turned out that I did have a DVT… in my right leg with another in the left leg to follow the following year… but my wife Janet has made occasional use of it and me and my Grandson have used it (not plugged in) as a console for our shuttle space craft. Waste not, want not. 😉
Just a note to check on before purchasing. 🙂
Dai.
Thank you all for your replies and your support.
I finally got through to the senior lead nurse today who told me that my lead nurse (Jenny) was off for the rest of the week but she offered to go through my bloods results:
HGB 10.8 (from 11.8 but still good)
WBC 3.0 (from 3.4)
Neuts 0.8 (from 0,77)
So very little movement with my Neutrofils and I am still neutropenic but Sarah told me not to panic… she said the Bendamustine was still in my system and working so suppressed bloods readings were to be expected. She said that there was still a week to go before my next consult (with treatment to follow the next day… if all is well) and there is every chance that my readings will start to improve on their own as the Bendamustine weakens.
My concern lies in my consultant allowing treatment to continue with such low Neuts but Sarah informed me that they will allow treatment to continue as long as my Neuts are at 1.0 or more… and seeing as my Neuts were 0.8 on Monday there is every chance that they will improve up to and past the 1.0 marker.
So feeling a bit better but the proof of the pudding etc… so roll on Monday.
Taliking of puddings… Janet is baking tomorrow (DexDay tm so I need a treat) and on the menu, amongst others, is her special 'Death By Chocolate' and she uses real death. Mmmmm.;-)
Dai.
And good health to you my friend.
I can feel your frustration Keith… at least your consultant is trying to trace the reason for your non-production of platelets, so let's hope that one of the avenues of exploration is fruitful.
What are/were your PP's at the last reading? As you say, if you can see some evidence of reduction then you have the basis for continuing with treatment while they try and up your platelets with some sort of confidence.
I am sure that the CDT, like my Bendamustine, suppresses your bloods readings but with transplants etc., you would hope to see some kind of improvement in your platelets count.
I wish you all the best and hope that the current tests for diabetes/a.n.other doesn't produce anything new to the roster… unless of course the treatment helps boost your auto-immune system.
Regards
Dai.
Hi Sue,
The decision not to move Michael to the hospice has sealed the deal… he will pass at home and his family will be there at the end. I know how difficult it has been for you for the past few months but I am sure that this is the way that Michael would have chosen… it would certainly be my choice… no, it is my choice. I want to go at home surrounded by the love of my family, even if, like Michael, I get to the stage where I am no longer conscious of the events taking place around me. I imagine the hardest part is seeing the man you know and love in a comatose state, unable to communicate, unable to even move or respond to those he loves.
Perhaps this is the time to take a step back… pull up a chair and talk to him quietly,,, you and your daughters can say your goodbyes quietly and with dignity, with all anguish and heartache put aside for a short while as you say your farewells… so if he slips away when you are not in the room you can all take comfort in the fact that you have said goodbye and you are reconciled to his going… this is a time for letting go and allowing him to move on… grief can come later.
I do feel for you and your family but Michael is no longer in pain and it is only his physical strength that is keeping him here. Let the professionals do their jobs while you and your daughters try to step back, draw your breaths and try to let him go with the dignity that you all deserve.
There are a lot of us here who are with you in spirit, willing Michael to pass without pain or distress and ready to comfort you as best as we can when he is gone.
Be strong for your family and be kind and gentle to yourself.
Much love
Dai.
Hi Susannah,
How are things generally? Are you getting enough support… the right kind of support and how is Michael coping without treatment?
Have you managed to visit the hospice yet?
Keep in touch when you can. 🙂
Dai.
Bumpety Bump.
Hi All,
Thank you for your continuing support and encouragement.:-)
I am feeling a lot better in myself, GCSF injections completed, 3 antibiotics finished so it's wait and see on Monday whether or not my Neutrofils are up and over the 1.0. I have another rest week before Cycle 3 and so the Neuts have to get up to at least 1.5 otherwise they will be driven down to Neutrpenic levels by the Chemotherapy… I don't know at what level the consultant will allow for treatment to continue but with such encouraging signs it would be a great pity if I was not allowed to continue at this stage. Still, I remain hopeful.8-)
Yes Vicki, France for the wooden spoon and Wales for the Championship (Triple Crown and Grand Slam done for by Ireland). England will have a lot of confidence for the Slam now and they do look good but Wales are looking more like the team of last year and won't give up the ghost quite yet.;-)
Regards to all
Dai.
Small things, little things, gentle things
Things that describe the way that I feel
Not sunshine or shadows
But smiles and side-glances
Little romances I know to be real
😎 😀 🙂
Dai.
Hey Tom, ho Tom, merry, merry, down… all in the Forest so green-o. 😀
Great news my friend… I am so glad that one of my contemporaries is getting a series of green lights… onwards and ever upwards. 😎
Most people on longer term remissions get on with their lives and drop in now and then… very understandable too… but you are with us, supporting us, giving us encouragement and a whole box-full of smiles and small joys. 🙂
Good for you Tom and here's to many, many more of them. 😎
Dai.
Hi Carryanne,
While you are feeling relatively fit and taking hygienic precautions etc., you can carry on more or less as normal… but there will be certain times where you will have to take extra care, especially where germ carriers are concerned.:-(
I am assuming that your CDT treatment will be a complete success and that you will then start the Stem Cell Harvesting procedures. If you have a cold or some other infection these procedures will be delayed… the same for your Stem Cell Transplant. You have to be strong and positive and somewhat bloody minded at times… banning anybody with infectious germs or anybody who has been around someone with infectious germs. The crunch time for this regime will be when you first come home from your SCT and for at least 3 months after. I know it might seem draconian but you will want to be able to have many years of contact with your loved ones and it is not worth risking that chance because of laxness when it really matters.:-|
We have our grandchildren twice a week during term-time and 3 to 4 times during the holidays but… there have been times when we have had to cancel (due to one or both having sniffles etc.,) especially when I am on treatment. 😛
Life with MM is different to life without… of course I am stating the obvious but I am not just talking about personal experience… I am talking about how the disease affects the life of loved ones and friends… how, where and when they get to see you being the most important factor. With your Grandchildren, if there is any doubt you can always stay in your bedroom until they are gone (I have done this many times and talked from the doorway with them down the hall (we live in a bungalow) if you live in a house you can talk from the top of the stairs… but if they definitely have colds etc then it is best that they stay away. a sniffle for a child can easily turn into a chest infection and hospitalisation for you. :-0
I have a mantra which I have employed since the start of my MM journey 'Whatever It Takes'… it is my catch-all saying and my way of life. 'Whatever It Takes' by way of processes, procedures and treatments from the medics and "Whatever It Takes' to stay healthy for as long as possible at home. There may well come a time when you cannot have the children after school and this may become a regular occurrence… so while you can carry on as normal for most of the time it is of vital importance that your children find alternative arrangements for child-care when necessary… noting that this may happen very quickly at times.:-/
Until you are well on the way to recovery following your SCT it is best to take precautions and err on the side of caution… don't take the risk… my experience and the experience of many on here I am sure, is be safe not sorry… it will be well worth it in the long run.8-)
Sorry to be sounding like a party popper but while we can be very strong mentally and spiritually unfortunately we are very vulnerable to lurgy and germs and the like.:-S
Regards
Dai.
