Hi Jen,
Re your dad looking poorly. When my partner started his treatment, and right up to cycle 7 he had a pasty, sallow look about him, that ranged from really pale then flushed. I assumed it was the medication. Now that he is off treatment waiting for the next stage he does look more like himself. Although he does get very very tired and snoozes, particularly if he has had a full-ish day at work. The medical team seems really thorough with the bloods and Colin also had to do a monthly 24 hour urine sample collection. That was fun ha ha!.
Your dad seems to be doing very well and I noticed that Colin did less as the cycle went on I assume because the medication was building up and doing the job. I also kept an eye on any bone pain and always made sure Colin mentioned it when we went for our monthly check up.
Best wishes
Vicki and Colin
Hey eve ,
Please to hear that things are on the up for you and Slim. Glad to hear that the bloods are on the up. I love Dai's phrase, rebooting the system! Sounds less scary that SCT. Hope everything continues in the same vein. Colin had the second bone marrow aspirate today because the other one last week wasn't a good enough sample. He said it was excruciating. I took him to the hospital and hate leaving him for that as I know he hates it. Tell Slim not to run before he can walk but is that a man thing? 🙂
Vicki
Hello Mari,
Just wanted to put our twopenneth in and wish you and Steve best of luck with this second SCT. Will be interested to hear progress, since Colin is waiting for his first. Very best of luck and any food tips welcome as I know that will phase me if Colin does not eat. All the very best
Vicki and Colin x
Hi liz,
Glad to hear that SCT was not as bad as you thought. My partner colin is just behind Stephen and we are apprehensive. He will be going to bristol for the first bit then Chen re ham. Any tips you can give would be greatly appreciated.
How are you doing post SCT and did you have many side effects.
Thanks
Vicki and Colin x
Hi David
Just wanted to wish you well with your consultants visit tomorrow 🙂
Vicki and Colin x
Hi all,
David perky mite, read your musings. That is so helpful and in a lot of ways reassuring
Keith, thanks for your post. As I have said before it's good to hear it from people who have been there. I will also try to remember the tips like ice lollies, I also recall from somewhere that pineapple is also good. Sorry that you did not get a longer remission but I can see from this site that there are leaps and bounds in treatment and I am confident that that isreali vaccine (I think) will come up trumps and be the cure all! Good luck with your next phase of treatment.
Penny, good luck for Monday. Will keep an eye on your blog. I hope all goes well and you will have a smooth passage through the choppy SCT waters!
Andy, I know what you mean about the understanding and reading it all. I thought I held the Olympic, no world! Record, for reading every website and information I could find. At work they call me Dr Meek!!, sometimes a little knowledge is a dangerous thing and of course this blood thingy is very complicated, as you say, how many times to read it! Your positivity is to be admired, as I do all of the fellow sufferers who deal with this unpredictable condition with vim and vigour.
Ali, I hope all goes well with your mum. Keep us posted.
Hope I haven't forgotten anyone with this general post. If I have sorry, but I can assure you I have read everything you put in……more than one! Subconsciously I think we both know which way we are going with this; we bought some new jim jams for hospital so I think that's it all bar the shouting, and worrying, and questions ha ha!
Best wishes to all.
A little info on a lighter note, have not been out for a while so am going to a fashion show tonight in aid of cancer research so might treat myself to – little something! 🙂
Vicki
Hi ann and Peter,
Very glad to hear that the heart problem has turned out to be a non problem, like you say one less thing to worry about!. Colin had a lot of breathlessness and lethargy. I'm sure as the treatment moves on he will get better in that regard. That says Colin manages to go to work at least 3 times in a week at the moment, either part or full days but he is absolutely shattered when he gets back home. Asleep in the chair at the moment!. I get the feeling his taste buds are returning as he said he really enjoyed his meal tonight.
We were gobsmacked when they told us about SCT but that said Colin did say that he felt a bit calmer about it tonight, aided by all the wonderful posts, Stephens outline on stem cell harvest and the musings from ward 9. It was also good to hear it from all the 'horses mouths', Dai, Andy, Helen and also from Eve in relation to slims very recent experience. Very pleased to hear you guys are also heading that way. May be we can all start 2013 with a clean slate, for as long as possible. Also glad to hear that the consultant was able to put your mind at rest and answer all your questions.
Not surprised Peres grumpy with that travel insurance price. I think the days are long gone are the days when we can get worldwide annual trip for £25. Still good on you for going, we have not been out of the county yet……but we might be having an excursion somewhere in the uk in the next 6 weeks. Good luck with it if you do go, and have a relaxing time. It will do you good too.
Colin asked me to shave all his hair off before he goes into hospital for SCT……not sure I can do that. I am hoping he'll go to the barbers! Keep us posted.:-)
Best wishes Vicki and Colin x
Hello only me,
I have read your post and I am so sad for you, your mum and your family. I love my mum dearly and can only imagine what you are going through. There are no words of comfort that can ease this, but hopefully your mum can slip away quietly into a place of no pain or discomfort. Our thoughts and prayers are with you and your family at this sad time.
Vicki and Colin
Hi there,
Just caught up with the post. You have had a real nightmare and thank goodness you have been diagnosed and now onto the treatment. My pattern Colin was diagnosed last October, unlike you, with few symptoms and discovered by a random blood test. Whilst I would not say we were relaxed with the treatment ( we found it all very intimidating and really in shock to begin with ), the treatment can work wonders 🙂 So all the very best with your treatment and road to remission
Vicki and Colin
Dai,
This latest post just about sums everything up. It made me feel such a mix of emotions, but I can tell that the post came from the heart. Thank you so much. I am sure we will ask lots of questions to both the medical team and you 'fellow mm'ers.
For today we will try to have a 'normal' day and ponder some more later x
David (perky mite), Stephen has already recommended your musings so I will take you and him up on that offer
Best wishes
Vicki and Colin x:-)
Hello Dai,
Thanks so much for this very informative and detailed post. Considering we knew SCT was the next stage it has certainly shaken us up over the last couple of days and colin seems to be having some peaks and troughs of nerves. I'm not sure what I feel like. It is so helpful to have contact with someone like you because not only have you 'been there',but also seems to have a wealth of knowledge about up coming drugs. Any chance they can think of the miracle cure injection in the next 6 weeks? 🙂
Sorry about the spelling, but this drug carfliblomib, if this is authorised do you know if that would involve large doses of chemo and what other drugs would need to be taken with it. Just thinking ahead just in case!
Dai I'm sorry your SCT remission was only the 10 months, and the worry is always a lot to go through for that short time, however treatments seem to be improving all the time. Everyone's posts have helped me in any case. Thanks for taking the time out to explain your experience. Hope you keep well 🙂
Vicki and Colin.
Stephen,
Thank you so much. Colin has read your blog and found it so so helpful. We hope it goes well for you, we will be thinking of you. I am sure there are lots of questions so any info will be greatly received.
Keep in touch 🙂
Vicki and Colin xx
Tom and all
Thanks so much. He has read these posts and I think it has helped. He was actually singing in the bathroom! , not a good sound LOL, but it's nice to hear him sounding a bit happy.
I can t tell you have much this is helping both of us. Stephen has also done some brilliant posts re harvest etc and we will reply to him too x
Vicki and Colin x
Hi Andy,debs,helen, gill,eve,
Thanks very much for your positive responses and honest comments. Its so good to hear that it made a difference. I can tell that it is very much on colins mind at the minute. I am sure we will go over this a lot in the next few weeks. I have shared your positive thoughts with him and he appreciates it greatly. We will see what the next few weeks brings.
Helen, I read you have gone for the blonde look, I did share that with Colin, but that didn't seem an option for him lol!
Sometimes this seems like a crappy situation and I've almost shattered myself with worry about the induction treatment! Still seems that was the walk in the park bit ha ha!
Will keep in touch when we know whats happening!thanks again. And good luck with slims recovery eve.
🙂 🙂
Vicki and Colin
Oh dear,
I spent a lot of time thinking about you yesterday. It's really rubbish isn't it. It would be almost a relief if it was just! mM wouldn't it and who would have thought any of us would say that. Not sleeping does not help with the lack of energy that all the worry takes out of you doesn't it. I really hope your mum is feeling a bit better today, and that your dad can keep his chin up. I hope you enjoy the walk, fresh air is so much better than hospital air.
Best wishes
Vicki
