Hi Jo and eve,

Sorry to hear you both (and slim) are having a rough time.myelomas hard but when there are kidney issues as well it must be a real burden! It’s funny how we all float on in life until this Big Bang myeloma rears it’s ugly head…..don’t know bout you but I’ve forgotten what life was like without it!

Hoping that things improve for…[Read more]

Hi there

Sorry I have never heard of this either. Good news though that they caught your dad early and they can monitor him 🙂

Vicki and Colin x

Hi both

Just tuned into this thread. Good luck to you both and keep positve. My partner had his sct in November 2012, we were scared witless before it started but we took each day as it came. He had good and bad days but achieved an full remission so keep your chins up. Did you have ice lollies when you had melphalan? It helps with the…[Read more]

Hi Frances,

Like others have posted, I also started on my myeloma journey with odd pains in various parts of my body, which accumulated into spasms in my back which I suffered for some weeks even with strong painkillers. During this period, I was being investigated for possible causes of the pain and underwent x rays, ct scans, and ultra sound…[Read more]

Helen

That’s great blood results and glad to hear you are getting away on holiday. Have a great time and be frugal as you have a wedding to pay for, lol x

Vicki and Colin x

Carol that’s great brilliant news, well done you

Vicki and Colin x

Hi jean and frank,

Hope the consultant visit went ok today and franks continuing to improve with the shingles. Colin told me it was very painful when he had it! Calomine lotion is meant to be good for it too.

We are going to mauritius next week for two weeks. Weird considering we haven’t been anywhere and now we are going long haul. Lord knows…[Read more]

Hi Andy and steph,

Glad to hear you’re getting the chance to travel, even with the hospital interruptions! I didn’t mean to sound like I was saying we need to lighten up….it’s a v serious subject! It’s just that sometimes it scary and we all need someone to throw a lifeline in here and there 🙂

Glad you got to the pub for tea and some beer.…[Read more]

Hi Alison

Lovely to hear from you how is your mum doing? We aren’t on face book! We need to get with the programme as they say! Yes we have finally bitten the bullet we are going to mauritius for 2 weeks! Really looking forward to it, I got told off last night for being paranoid as I want to take the thermometer with us! I have managed to get…[Read more]

Hi Carole

Just wanted to wish you all the best and that you are on the mend a bit. Fatigue has always been a problem for Colin. Hope you throat is feeling better. That was a real problem for Colin too x

Every day is a day closer to full health

Best of luck

Vicki and Colin x

Hi all

I’ve caught up with this thread and there seems to have been a lot of high feeling at the start. Treatment and choices is always something that will need to be made by nhs and of course what we make as part of the journey. In our circumstances I’d like every penny to be spent of treatment and cure for myeloma, and find it now. However…[Read more]

Hi there,

My partner Colin had sct in November 2011. What happened in the less up to sct, you are given a growth injection called gcsf (you can either administer yourself or nurse can come in to do it). It was about 4 days worth. We the. Had to go down to the aphoresis unit in Bristol and you are put on a machine which separates your blood- for…[Read more]

Hi jean and frank,

So sorry to hear that frank has been going through the mill. The shingles sounds awful. That is one thing that Colin dreads. I have been told the pain is really horrible. Sometimes it does feel like its one thing after another doesn’t it. What about putting calamine lotion on it? Would that help?

Hope frank is on the mend a…[Read more]

Megan

I’ve just noticed your post that Phil’s numbers are going up again, so sorry to hear that. Glad to hear that the counselling has helped you. I do understand what you mean about living for the day. It is so hard not to what if though isn’t it!

All the best with the next steps

Vicki and Colin x

Hi all

I’ve read these posts and just want to stress how important it is to share your worries and conerns if you feel you can. It’s a long hard road to be lonely as well as battling this damn condition. So share your highs and lows with us. We are all in it together in one way or another so let’s all help each other. This forum has been a…[Read more]

Hi there

I would say that our treatment has been amazing with the nhs, from the consultants to Dave who brought the food and drinks trolley round. They all give 100% . Colin had private medical insurance and when Colin had back pain we went private for the MRI scan. The consultant told us it was nothing sinister, nothing that physio wouldn’t…[Read more]

Hi Jean,
I’m not sure whether a light chains increase with myeloma patients when they have an outbreak of shingles. A couple of years, I asked this question at a myeloma information day to one of the consultants and the answer was possibly, mainly because the immune system will be fighting the shingles virus which leaves the immune system more…[Read more]

Hi Angela,

Our family has been covered via private health insurance through my husband’s employment for many years. We have successfully used this insurance for short term treatment such as my son’s sports injury and my husband’s cataract surgery. The treatment was far quicker than the NHS would have been able to provide, which helps when you…[Read more]

Hi Jean,

I still remember the burning and sharp pain associated with shingles when I suffered an outbreak of the virus all down the right hand side of my body a couple of years ago. Most of my right arm was covered in a mess of large red blistering, itchy patches. I was lucky in that the pain only lasted for around 6 weeks, but I struggled…[Read more]

Hello Luciano and Chris,

Sorry to hear of your condition. When Colin was diagnosed in 2011 it was like we’d been hit by a train. We couldn’t believe what we were hearing and then frightened about it. Colin went from being a healthy ski-ing, golfing, kayaking individual and actually very annoyingly good sportsman to having a condition that…[Read more]