Hi all, I'm buckling up for the ride
See my personal info for the train crash of my journey so far...sorry for length
Yesterday had first chemo at Addenbrookes day unit about an hourish away. Given the GCSF that needs mixing together. Gave myself 2 jabs rather than leaving needle in for second syringeful...followed by a clexane chaser!
I hesitate to say this was the simplest bit...
Will return there for Auto stem cell harvest planned for next Tuesday and Wednesday (9/10th). Will stay in caravan nearby as hospital accomodation doesn't take dogs, obviously!
Transfer will be at my local hospital in Ipswich
Greatly encouraged by all your stories....in my moments of despondence and anger I know you're all there with your experiences and encouragement...if you can do it I'm going to give it a damn good try!
My husband is always there for me and takes one day at a time....he never reads up or anticipates anything, no questions or negative expectations. However I'm the questioner, reader, planner, preparing financialspreadsheets...info, dates etc for when I expire (sounds better than die or snuff it or shuffle off to rose cottage, lol). I'm learning to stay in the moment and breathe.....trying not to jump forward to all the things that can go wrong but taking notes of advice....avoiding mouth ulcers is a Biggie.
Veins not good after 2 courses of chemo. Pick line never worked well. In for central line this week...hope we can go for subclavian rather than neck. How does showering work?
CAR-T has been mentioned as being a possibility so there's hope if this doesn't work....last resort....let's get this over first with lots of crossed fingers as I'm really not that optimistic regarding long term.
Kudos to all with long term health conditions especially with pain issues.
I'm not sure I've got the strength to 'live long and prosper' Spock
Regards, Lynda xxx
Oh Lynda, it is so good to hear from you........ out on day +12 - rock on you.
So as we all say "take each day as I comes" and yes, the little things that were not that important are magnified out of proportion. A few of my initial things was darkness, the smell of fresh ground coffee and watching the trees in my back garden move with the wind.
When you go to clinic expect the unexpected, on the first one I was caught out and like yourself I needed some of the red stuff so after that I was better prepared with all the 'stuff' that would get me through the 'long wait'
Day +100 will be on you before you know it, rest up and enjoy the 'all new you'.
((hugs))
Hi all, 4 weeks since transplant. Had low hb since discharge......don't know why they let it hit 7.4 before transfusion last Monday......i was like the walking dead. 2 units and I'm back to having a bit of an appetite. Was sooo sick all day on Monday.... Don't like this malarkey at all. Husband Ray says I'm getting bossy so that's a good sign. Consultant says I'll feel much better in 3 weeks....I'm holding him to that!
I officially hold 2 records locally......shortest admission and largest volume per million of stem cells. I did not rock the sweet corn smell. I'm amazed at how much I didn't lose weight Wise in hospital......the food was rank. Cooked chilled at it's worst.
If I'd have had a gun the seagulls squabbling and whoever was feeding them would have copped it!
So that's Dhap, abdominal surgery, beam and auto SCT this year so far. Foot/leg still tight and ankle painful.
That's all folks
Lxx
Hi Lynda, thanks for your update...... if it was not for the fact that we all understand that there is a much more detailed story in the background your update should not be so funny, but I have to say that I love how you embrace this journey and kick against all the adversity ((hugs))
Hi Lynda,
goid to hear from you and too, to know your sense of humour is alive and kicking, haha!
Seriously, the anaemia is a pain so I hope those red cell generators in your marrow get a move on and start their work!
hugs xxx
Moomy
Morning all:-)
8weeks since hospital admission. Slower recovery than I was expecting physically...hampered by my dud leg and vertigo/sickness.
I'm spending longer in bed than I ought to....but it's warm and cozy and I'm comfortable! When I'm upright is when I'm sick:-(
Pet scan and bm biopsy late November....I'm not very optimistic....can't see how that level of disease has been eradicated
Consultant tells me next move would be car-t
They're very happy with how my blood results are recovering and central line came out a couple of weeks ago.
Hope everyone's well and prepared for the miserable winter ahead
Regards, Lynda xxx
Hello Lynda,
sorry you’re not feeling better, but great that the line is out at last. Hope you’re still getting antinausea meds? Ginger can also help, plus the sea sickness wristbands.
Hope the scan reveals better news than you are presently thinking, and at least there’s a plan b!
hugs xxx
Moomy
Got everything crossed for you Lynda, you truly define the meaning of being on the treatment Rollercoaster.
((hugs)) just ((hugs)) xx
Hi all! Saw consultant yesterday for results of pet scan and bone marrow biopsy...still waiting for results of core sample but everything else..... No evidence of disease....no deauville or SUV cos nothing glowing. Does that equate to complete remission? Can't really believe it after the year I've had with chemos, surgery, radiotherapy and auto sct\(°o°)/. 3 month check ups.
What a wonderful Christmas present!
Went out for a celebratory lunch (and threw up afterwards)
Love to all
Lynda xxx
Oh Lynda I would take this to be an amazing result and even although you threw it up - worth the celebration.
Great early Christmas gift and it’s not a dodgy jumper........ I am doing my happy dance up in the Highlands and I am so pleased for you and let this news help to make the past years memories get fuzzy at the edges.
((hugs))
Great news Lynda!!
Paul
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