Great news! Enjoy the feeling of relief – and surprise and, as Megan says, long may it continue.

Sarah

I just wanted to reiterate what Karen says above: if appointments take a while to come through we always phone to check. Quite often the appointment is made there and then. This seems to be particularly the case with scans for some reason. No harm in checking and it’s better than being anxious about how long you are going to have to wait.

Oh my goodness, Eve, what a lot you and Slim have had to deal with – and still do. I’m sure all this has exhausted you but I am full of admiration for your determination to do the very best for Slim at the times when he’s not able to fight the whole battle himself. Stories like yours are important for others, like me, who are still getting to…[Read more]

Hello David,

Susie’s advice is good, and as I responded to another post with this advice I’ll recommend it to you too.  Macmillan benefits advisors are really helpful and should know about anything that might be available to you. You’ll save yourself a lot of time and stress, I think, if you contact your local one. You can either make an enquiry…[Read more]

As I understand it, it has all changed and new claimants have to claim for PIP (Personal Independence Payment). The higher rate is based on your ability to do things for yourself and the support you need. My husband is receiving it because, at the time of completing the form, which is what they assess, he was unable to walk more than 50 metres and…[Read more]

Fantastic news!

Time to really enjoy life again.  Hoping for a really long, healthy and happy remission for Graham and peace of mind for you, Angela.

Sarah

Hi Deborah,

It sounds like UCLH has a lot more options when it comes to keeping an eye on you than our hospital here in Swindon. Here you are basically in or out, and if it works well you get into the specialist haematology/oncology unit. M is now home after a very sudden discharge yesterday evening. No hint of it on Thursday so I went to a…[Read more]

Thanks Maureen,

You are always so reassuring. I just hate seeing M going through so much. It wouldn’t be so bad if there seemed to be any positive results from all of this. We just have to hang on to the knowledge that the myeloma hasn’t progressed and would have done without treatment. He will get to SCT and maybe it won’t seem quite so bad when…[Read more]

Thanks Mavis and Megan,

Lovely to hear about your rainbow too Mavis.

I’ve been to PALS today and got the parking issue off my chest.  Never thought about taking a cab, Megan, but that’s a really good idea.

M has C.Diff. He’s now in isolation and will be in for at least 10 days. This will certainly have an impact on the chemo and SCT plan, but…[Read more]

Well, M got through the DT-PACE pulse without too many problems. He was very tired but there was no nausea of anything like that.  He needed a blood transfusion afterwards but was discharged after that last Sunday. He saw his consultant on Tuesday and Friday (we get great care here!) and was neuropenic on Friday. Had to start the GCSF injections.…[Read more]

Thanks Andy, David and Tom,

Andy and Ceri’s experiences seem to sum  a lot about myeloma treatment, in that something that doesn’t work for one person can be so successful in another. It’s really helpful to hear about what you’ve experienced.

My husband seems to be doing ok at the moment. He’s coming up to the end of the second full day of…[Read more]

Hi  Susie,

It’s there if you click the Information tab, look to the right-hand column and then click Myeloma UK publications list. You’ll find it near the bottom of the list and you can download it.

Hope you find it.

Sarah

We got the phone call at lunchtime today asking M to be at the hospital as soon as possible. He’s started chemo this evening and won’t be moving far as he’s got two lines in one arm and one in the other. The infusions run for 24 hours and the nurses will check every couple of hours, so he’s going to get very tired, I think. He’s also on a very…[Read more]

Thanks Rebecca, Maureen and Megan,

The bottle of red is being enjoyed – I get it all to myself as M doesn’t drink (and it wouldn’t make a good combination with the morphine!).

Rebecca – I’ve been reading and in America they sometimes add Velcade to DT-PACE – maybe M is being let off lightly?!

It’s a bonus to have sunshine this weekend. We…[Read more]

Maureen,

It’s so good to hear of Ian’s progress. It must be such a relief to see him getting more mobile and doing so well.

I do try to take one day at a time. Work makes that difficult, but I do my best! We’ll enjoy the next few quiet days and I hope you do too.

Sarah x

The best-laid plans and all that …

He’s home again tonight having had BMB and picc line fitted. There’s a problem getting the chemo drugs – something to do with one of them beimg unstable and only lasting 24 hours and the bank holiday weekend being imminent. So now it will probably be Tues or Weds next week before M actually starts the chemo.…[Read more]

Thanks Rebecca and Maureen,

We’re hoping that this aggressive treatment will send things in the right direction. It’s reassuring that M now knows most of the staff on the ward and he even has the same room as he had for two weeks in January. He’s booked in for BMB tomorrow morning with the nice registrar who talks about football with him. I’ve…[Read more]

Really good start with the Velcade, Maureen.

M’s consultant said that a good initial drop was a good sign. Let’s hope it keeps going in the right direction.

Sarah

It’s all happening rather quickly. We got the call to go in this afternoon. It’s better than hanging around wondering! It looks like a bank holiday weekend in hospital for M.

Thanks Tom.

We’ll probably be a bit less anxious once we know when this is all starting.  It should be next week but the consultant needed to organise BMB, picc line fitting and a bed before he could confirm admission date.

The positives are that it should be a fairly intense but short period of treatment and a fairly rapid progression to…[Read more]