[bandityogaParticipant]

Thanks Mavis, trying to stay positive and hopefully Ian has more time before treatment.

How are you?

Maureen x

[bandityogaParticipant]

I am so sorry your husband has passed away at so young an age. Take time to grieve and remember all the good times you had together. I am thinking and praying that you find strength and comfort knowing he is at peace.

[bandityogaParticipant]

Hi Jan

Good to know you harvested enough stem cells for your transplant. Ian had plexifor too as well as 4 days on gcfs injections. You should have a nice holiday to look forward to when you are well enough to travel. I hope your SCT goes well and gets you into remission for a long time.

We had a lovely holiday in Copenhagen despite one day of rain. There are lots of palaces to see and of course the little mermaid. We had one day of rain and we did the hop on hop of bus. The food is delicious but very expensive. We went into a lovely coffee shop and had their traditional strawberry cake with cream, (it was huge) and coffee. it cost us £28! but it was an experience.

It has been really cold here and we are glad to have some sun and warmth today, but of course it will be warmer down south.

I hope your son has fully recovered and I will be thinking of going through your SCT.

Maureen x

We are now looking forward to our trip to Bermuda in June. Ian has an appointment with the consultant on 17 May so I pray all is well.

[bandityogaParticipant]

Jan

My husband has free light chain myeloma. He didn’t respond well to velcade nor revlimid. His FLC were 168 and I asked if he could have a SCT. One consultant said no but another disagreed and he had his SCT in May 2015. His FLC were then 500 but he then had cyclophosphamide and melphalan. He has been in remission since then and doing very well. If your FLC have plateaued or are rising I would go ahead with your SCT.

Maureen

[bandityogaParticipant]

We use nowicantravel. Very reasonable but we haven’t had to use them on our trips so can’t comment on how good they are.

Maureen

[bandityogaParticipant]

Hi Jan

Case is not packed yet but everything ready to put in it. Why do women have to do the packing? We are returning on Friday so not taking too much. I only hope the weather stays dry.

We have had a busy period over Easter. My daughter came up from London for a few days and we spent Saturday in Edinburgh as Ian was at the football with his dad. We had lunch at Jamie Oliver’s but I wasn’t impressed so I don’t think I would return. We then visited my son, daughter in law and granddaughters. It was Isla’s 7th birthday so all the family were there and my daughter in law made a lovely chocolate cake. More calories to walk off. Ian’s dad came for dinner yesterday, I made roast lamb and strawberry pavlova.

You’re son must be very annoyed that he cannot go to the game at Wembley but it is better to be safe, as we know. Can he not get the money returned or a voucher for another game?

I hope you manage to harvest enough cells for a SCT, 6 hours is a long time to sit. Take lots to keep you occupied. Ian just got enough over 4 days. Ian’s FLC rose to 500 when he got his SCT so I hope this isn’t going to be a problem for you but I know we all worry.

Maureen x

[bandityogaParticipant]

Hi Jan

We had a lovely time at Ian’s 60th with family and friends. Now looking forward to going to Copenhagen, just hope the weather is kind to us.

Have you got a date for your next SCT?

Hi Stanley

Good to hear from you again and hope you are doing well

Maureen x

[bandityogaParticipant]

So sorry to hear your mum passed away but she will always be with you. Remember all the good times you shared and be thankful she didn’t suffer.

Maureen x

[bandityogaParticipant]

Hi Jan

Good to hear your FLC were decreasing, last time we wrote. Have you got a date for a SCT?

We have both got bad coughs again. I went to London last weekend to meet up with my daughter, went to see the musical Beautiful about the life of Carol King. I loved it and knew all the words, that was my era. I also climbed 376 stairs of St Paul’s cathedral, my poor legs. Wakened on Sunday with a wheeze and a cough and I have been in bed most of the week and passed it on to Ian. He isn’t on chemo but we are keeping an eye on it. I think we need some sunshine.

How is you hubby’s arm and has your son got a date for his operation?

Love Maureen x

[bandityogaParticipant]

Hi Helen

Hope you are still doing well. Ian is 3 years past from diagnosis and I never thought he would make it but here we are 9 months post SCT and still doing well. I have arranged a birthday lunch for his 60th birthday and have requested donations to Myeloma.uk. We couldn’t get direct flights to Vienna so we are off to Copenhagen on 29 March.

It’s so nice to keep in touch with people who helped us through the tough times. Keep positive and hopefully you will get many more years.

Love Maureen x

[bandityogaParticipant]

Hi Jan

Ian’s FLC rose to 22 but his Kappa FLC rose to 24. Ian has always had Lamda light chains and the consultant was confused as his kidneys are fine. He wasn’t worried as the ratio was still within normal range and we return in 2 months. i am not worrying about it at the moment but will do if FLC continue to rise.

Planning a lunch at the moment for Ian’s 60th on 21st March for family and friends and a city break in Vienna. We haven’t been to Austria before so looking forward to seeing the grand architecture. We are not an opera fan but depending on what’s on we will give it a go. We have also booked a holiday in Bermuda in June so really looking forward to that. We have been before and it is beautiful. Pink sands and blue sea but there is a lot to see and the transport is very good.

It is snowing and freezing here at the moment but very pretty, better than all that rain we have been having. Did you get lots of rain and were you flooded?

I do hope that your light chains continue to decrease and it won’t be too long until your SCT. Ian’s FLC were 500 when the consultant decided to give him a SCT but I’m sure they came down with the cyclophosamide they gave him before harvesting.

I am now trying to lose weight and eating smaller portions, Ian has put a lot of weight on so I am nagging him to lose some too. It is easier when the weather is warmer and we get out into the garden.

Hopefully your hubby’s arm is much better and you get a date soon for your SCT.

Maureen x

[bandityogaParticipant]

Hi Jan

Wishing you a Happy and healthy New year. Ian’s cough disappeared just before Christmas so we had a lovely time and ate too much at my son’s for Christmas dinner. The grandchildren were delighted with their presents and Isla has been out most days on her roller skates. I now have to lose some weight but can’t resist the chocolates we still have from Christmas.

Has your son got a date for his tonsils op and has your hubby’s arm repaired itself, but most of all how are you? I hope your FLC have come down and you get a SCT quickly. Ian’s next appointment at the hospital is on Tuesday 12th January so fingers crossed all is well. I always worry when we go for results.

Maureen x

[bandityogaParticipant]

Hi Jan

Good to hear your treatment is still working. I wouldn’t like your heating bills but if it works why not. Ian also had a hard time harvesting stem cells but eventually got there. I hope you do manage to harvest and have a successful SCT.

Ian is still doing well although he has had a cough for weeks but the doctor is not concerned as it isn’t in his chest. We are looking for to Christmas and having dinner at my son’s house in Edinburgh. My daughter and her partner are coming up from London for a few days. Just love seeing the little faces of our granddaughters. I hope you have a lovely time and wish you a happy healthy new year. x

Helen

Sorry to hear your FLC are rising but I hope they can manage to find a treatment that works. I know how worrying it can be. Did you have a good day in York? Ian is 60 in March and I have some planning to do. I think a meal with the family and hoping to go to Vienna for a few days if all is well.

Wishing you a Merry Christmas and a happy healthy new year. x

Andy

Good to know you are getting fitter and the treatment is still working. Keep up with the exercises and you’ll be walking the dog soon. Have a Merry Christmas and a happy healthy New Year to you and Steph. x

Maureen

[bandityogaParticipant]

Hi Val

I bought hand gel and made each visitor use it at the door. I also used wipes for light switches and door handles. Wash all fruit and take the skin off where possible but try to lead a normal life as possible.

Hope Peter is feeling well.

Maureen x

[bandityogaParticipant]

Hi Andy

We did think about meeting up when we were at Rockcliffe Hall but thought you weren’t up to it. It is a lovely hotel and you should treat yourselves to a night away. They often have offers at different times of the year. The spa is wonderful and they have a huge hydrotherapy pool.

We saw the consultant today and Ian is still in remission,(sigh of relief) so his next appointment is 2 months away at the outpatient department.

Good to know you are improving, I am sure you will be doing all you can to get back your mobility.

Maureen x

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