Hi
Sounds like you were lucky I was only in hospital for about 5 days and the clot was removed.
I have been given the choice and continue to take Apixaban daily. Consultant says that with this chance of another clot is very low and it’s one less thing to worry about
Hi
I am a myeloma patient and had a blood clot last year.
I broke my ankle moving things around and needed a plaster cast. This resulted in me getting a clot which moved to my lung and a trip to the hospital because of the breathing difficulty.
Once there a couple of days with extra oxygen and some blood thinners I was soon back to normal.
The doctors were unsurprised by the clot and didn’t seem too concerned as it cleared quite quickly.
I think clots are a known side effect of some of the myeloma treatment and while it may be worrying at the time in my case there was no lasting damage and I was back at work within a week.
Good luck with everything
Brian
Hi
I had a SCT in 2015 and one of the things which I found hard to deal with was a delay in getting it done.
I had a date to go to Southampton General but due to the lack of beds my admission was put off a few times and I think I actually went in about 3 weeks later. If I had known in advance that this was a possibility it would have been OK but I had stopped work and mentally prepared myself only for nothing to happen.
I don’t know if your husband will also have his admission delayed but I have since been told that it is not uncommon so please don’t be concerned if it happens.
good luck
Brian
Hi
I paid about £200 for annual cover with Amex.
this was for both my wife and myself, and wasn’t their cheapest option
Apart from the Myeloma (which is in remission) I am in good health. I didn’t ask for cruise cover but £1000 seems a lot of money.
Good hunting
Brian
I wasn’t asked about terminal Prognosis. but I would advise telling them everything up front just in case you need to claim. the way medical costs can mount up you wouldn’t want to give them a get out
Brian
I have just got Annual Cover from American Express including cover for my post SCT Myelome.
The cost of annual cover wasn’t that much more than for a single trip but with any insurance you only find out if it was a good buy afterwards.
Brian
Hi
I had SCT in Southampton in July this year.
Everything went as planned apart from the actual admission day.
The harvesting session went well but I was very sore prior to the Harvest taking place.
They give you something to help stimulate stem cell production ( I’m sorry but it seems like I have had so many drugs I can’t remember names) in the week before the Harvest and this made me very uncomfortable. I later learnt that this was a good sign as it means that something is happening.
Anyway I was able to do the Harvest in one day others I understand have to come back the following day if not enough stem cells are collected.
The next hurdle was getting a Hickman/central line fitted. .
not a big deal took about an hour while under local anesthetic. only problem with this came when have a shower but nothing insurmountable.
I was due to be admitted on 23rd June and planned to finish work etc. to suit but because there were no beds available it was actually 15th July when I got in. The hospital did their best to keep me informed of what was going on but I think it is only when some one else is well enough to be discharged that they know when beds will be available.
I went in on the Wednesday evening, had large dose of Chemo on the Thursday and stem cells were returned on the Friday.
there were also lots of other drugs to help reduce infections/ settle the stomach etc but nothing major.
I think I then spent about a week going down hill and then a week getting better.
The nurses told vital signs every 6 hours or so and Blood once a day but other than that it was a waiting game. The doctors came round mid morning each day and you had a good opportunity to discuss how you felt. all the staff were very helpful were always available 24hrs a day.
I was one of the lucky ones who didn’t get an infection while in the hospital and was able to go home 2 weeks after the return of the Stem Cells.
My advice for what it is worth is to get up /dressed every day, some days I felt very weak but it is easy to let day slip into night and do nothing which doesn’t help with the recovery.
A Physio came in and gave me a series of exercises to do each day. I did most of them as instructed and again I would advise pushing yourself a bit to do as much as you can to aid later recovery.
When I got home I did go for a sleep in the afternoon for a few days but apart from avaoiding anyone who might have given me an infection life pretty soon got back to normal.
I am now back a work full time (office job). I was planning on going part time but once I got used to getting up in the morning it was easier just to do the normal working week.
I tried not to spend too long looking things up on the internet, most posts seem to be about bad news and can be a bit scary. for me the worse part of the SCT was really just the boredom of being confined to a room for a couple of weeks ( I was allowed out to exercise after about day 10)
I know that the support of my wife while I was in the hospital was crucial to my recovery, she visited and bought clean clothes each day and it meant that I couldn’t just sit and watch daytime TV all day. you can have visitors at any time of day and although I didn’t need it they do have room where visitors can stay if travel is a problem.
It is difficult to say I recommend have the SCT but if you need it you need it and now about 2 months later my life is more or less back where it was and I hope to have a long period of remission because of the SCT.
Sorry for the ramble I have just been typing as I think but if I can help with any further information please let me know
Brian
Hi liz
thanks for your reply. It is great to know that everything went to plan and you can now move on.
I am in Southampton general on transplant day plus 3.
so far all is good just very tired
Brian
Hi to everyone. I’m sending this from the ward in Southampton general where I was admitted yesterday.
Everything happened quite quickly, confirmation that the bed was available about midday and I was in by 3 o’clock.
I have had my large dose of methaphalan about lunch time and apart from lots of visits to the bathroom all is well.
stem cells due to be infused tomorrow.
Thanks to everyone who has been supportive, I think that if anyone finds themselves in the position of an unexpected delay then stay in touch with the co-ordinator and be assured that they are doing all they can and a couple of weeks delay is really not important when the point is to hopefully get years of remission.
I’m really positive about treatment and am sure that when you look at the bigger picture everything will be fine and life will go back to a level of normality pretty soon
Good luck and best wishes to all Brian
Hi Carol
Many thanks for your information. I think I will also try and take your approach of seeing what is best for me at the time rather than just following the text book.
Best wishes
Brian
Hi again Rebecca
Southampton where I am due to have my transplant didn’t seem too bothered about me working and having the Hickman line. Portsmouth where my treatment is based were quite upset about me going to work. I’m not too sure about the difference between looking at a screen at work or looking at a screen at home but I guess there is less chance of infection.
Anyway hopefully it will not be too long before I can go in then it won’t matter anyway
Brian
Chris and Rebecca
Thanks to both of you for you information.
I think that throughout the whole Myeloma every time I think I have things clear in my head it then seems to change on the basis that “everyone’s myeloma is different”.
Maybe I just need to wait and see what happens and how I react to the transplant and hope for the best
Brian
Thanks for the Info Tony.
What you have is more in line with what I expected.
I did know about the ‘old’ vaccines like measles needing to be redone. I think that chicken pox or shingles seems to be the main concern.
All the best
Brian
Thanks for the message- as you said sometimes you have to remind yourself that progress is still being made.
I have now had my Hickman line fitted which is a bit of a pain
The nurses have advised thai I have to stop going to work because of the risk of infection, I think I was ready for time off after the transplant but being off before may push the boredom threshold. All the best to everyone
Brian
Thanks for your note Graeme.
I think I was just a bit frustrated as everything had gone well before now.
I feel a bit more positive now and will make sure there is a stock of jelly!!
Brian
