[Ang287Participant]

Hi Scott
Graham is in now. He went in at 4.00 today and got a bed by about 5.00 after having some blood taken and temperature and blood pressure etc. Graham now feels he is ready to go in.
Graham felt fine both after the Melphalan and stem cell transplant. The Melphalan and flushes take up a full day and he drove home that day – I was ready to go up on the bus after work and drive him home if he needed me but he was ok to drive. The following day he had the stem cells back in the afternoon and that didn’t take long but our daughter brought him home that day and he actually went there on the bus with is case (just in case they kept him in). There were no beds but he was feeling fine and came home.
On Saturday he went in the morning for bloods and again took his suitcase but bloods were fine and he felt great so he came home and was due back today at 10.00. Last night he had a bit of a leak of blood from his PICC line so we went in and dressings were changed and he came home again but they explained about lack of beds to us then and I did wonder if you would go in but was not sure of the distance you were travelling and whether that made a difference to whether you went in or not as we don’t live too far away.
We are really glad that Graham had the extra time at home rather than being on the ward for so long waiting for things to happen. He only started feeling a bit tired and unwell last night after we got back from the hospital. He just felt a bit dizzy and it increased a bit today and he felt tired today but all in all he is doing brilliantly but he was definitely ready to go in and I am glad he is in and unpacked and settled prior to him starting to feel sick etc.at home and then having to get him in. He said his mouth was a bit sore when he had egg and bacon this morning but we know this is going to get bad as time goes on and he has been having ice lollies at home. It is now 4 days after stem cells put back in. His temperature when admitted was 37.1
but not sure how his bloods were today.
We wish you well with your treatment – enjoy some good food now while you can.
Angela

• This reply was modified 10 years, 9 months ago by  Ang287.

[Ang287Participant]

Hi Richard and Carol
Glad to see you are both doing so well. It will be great when you can go back to your normal foods again.
Graham had his stem cells returned as planned on Thursday but he was allowed home again but we had to go back this morning for a blood testand there was a room there ready for him. The blood test was fine so case put back in the car and back home again. He now has to go back on Monday morning at 10.00 and I see that Scott is going onto the same ward that day.
Graham has no signs of nausea yet and eating normally – rump steak last night and I am making a chicken curry tonight so in a way he has missed a week of his hospital stay which is great. We have started eating his stash of sweets and crisps etc that he has got for his time in hospital as by the time he goes in he probably won’t feel like eating anything.
Angela

[Ang287Participant]

Hi Scott
I bet Paul did your PICC line! We have just come back from MRI. My husband Graham had his Mephalan on Wednesday last week and his stem cells returned on Thursday. There is a bed there on Ward 44 for him but as he is doing so well at the moment and we don’t live too far away he can stay at home for the weekend. His blood test was good today so allowed home until Monday when he goes back at 10.00 and at that point I am sure he will be admitted, if not before so I am sure he will see you next week!
It’s a lovely ward and all of the staff are brilliant – I could not ask for better treatment for him.
I must warn you Graham is thinking of changing his career to comedy and he may try out a few jokes on you!
Angela

[Ang287Participant]

Hi everyone
Graham has had the Mephalan and kidney flushes today and now home as no bed again. He felt ok to drive home again at 6 pm and now home creating another spreadsheet of tablets as if he keeps ok he can stay home until after the weekend. Tomorrow he goes back at 1pm for the stem cells and then comes home. He will still take his case tomorrow just in case he feels ill but if he feels like he does today then he can come home until next Monday with maybe an occasional visit to hospital for blood tests but can telephone the hospital daily as well. This is brilliant for him if he keeps well for the next couple of days and he has been told that he is one of the youngest and fittest patients they have at the moment and we only live a 35 minute drive away (except in rush hour) so this suits him well and this is just as Michelle has said. I will now have to be extra careful with foods I am giving him and was not expecting this for a couple of weeks.
Hope you got home ok Carol and it will be nice to be in your own bed tonight.
Angela x

[Ang287Participant]

Hi
Graham went to hospital this morning but no beds due to other emergencies coming in so he goes back for 8.45 in the morning and has the Melphalan and then a bed will be available at lunchtime. In a way it has worked out good for him as he has another night in his own bed and SCT still starting tomorrow morning and may be able to come home at weekend for a couple of days prior to going neutropenic.
Angela

[Ang287Participant]

Hi Carol
My husband Graham goes in for SCT tomorrow as had chest infection last week and could not go in. I still read your posts to him. Glad you had no mouth sores but bad news about your oesophagus – I am sure it will get better each day and hope you are soon home again and have a long remission.
Best wishes, Angela x

[Ang287Participant]

Hi Richard
Glad to hear you are out on parole for good behaviour. Graham is hopefully going in tomorrow for his STC. His chest infection has now improved and a terrible rash that he got on his face has now also improved. We were lucky in a way that the chest infection started the day he was due to go in and not the day after.
Graham bought an electronic drum kit at weekend so now has something to look forward to when he comes home. He may even be able to come home for a couple of days next weekend before going back in again.
He has lots of films loaded onto his computer and lots of DVD’s to take in – he has had an extra week now to prepare for stuff to take in with him and another week to eat nice food before his appetite goes.
Let’s hope Carol is doing well and over the worst bit soon and it is nice to see how good Tony is doing – hope everyone has a very long remission.
Best wishes, Angela

[Ang287Participant]

Definitely losing it! You are not Carol you are Sarah. I think the fact that graham’s stem cell transplant yesterday has had to be postponed has had a bad effect on me and feel quite stressed this week.
Angela

[Ang287Participant]

Carol – I am losing it. I am 56 for the next fortnight and graham is 56 until November.

[Ang287Participant]

Hi Sarah,
My husband was diagnosed in May 2013 with fractures in his spine and multiple myeloma. we are both 57.from January to end of april all he was offered was painkillers from his gp and physio but it was not improving and he was eventually diagnosed when his physi requested an mri scan. from January to april 2013 I was going through interviews and tests to keep my job at a local hospital as a medical secretary and it was doubly stressful with graham being ill as well.from diagnosis it took about 2 months until graham started improving and he then cut down his days as a teacher to part-time with part-time lesson planning at home. I have carried out working full-time as a medical secretary but it has been hard and I have been saving my holidays for when graham goes in for his sct which should have been yesterday but he has a chest infection and we are now hoping for next week.
after he has been in hospital a week I will be taking my annual leave to visit him and then look after him when he is home. In 3 months we are hoping graham will be in remission and we can both go back to how it used to be before this disease struck. I am glad that I haven’t given up work as I think it has helped along the way to do normal things but it has been very tiring and I feel in desperate need of a holiday.I have gone to all graham’s appointments with him but that has also been from my annual leave.at this stage now graham has hardly any pain in his back and he said even going through the sct can hardly be any worse than the horrendous pains he suffered from january to may last year when he really had no relief from it and horrible spasms of pain that sometimes made him fall to the floor and he also had trouble breathing at times.
Hope this helps and please get in touch if you have any other questions. Best wishes to you both.
Angela
PS Every time I did a capital the text of my post went onto a new line so I have removed all the capitals
apr

[Ang287Participant]

Hi Carol
Hope it’s going as well as it can at the stage you are now at. I read out how you were doing to my husband so he would be prepared for when he was due to go in yesterday and glad to see that 5 days after transplant you are finding it manageable despite all the side effects. We were still packing Graham’s bag at midnight on Monday but on Tuesday he woke up with a chest infection so transplant has been postponed and he is now at home with antibiotics. If he is well enough he will go in next week so he just has to rest now and hope that it clears up soon. It’s so disappointing though when you have had this date in your mind for so long and he has been so well up until now.
Hope to hear from Richard soon who went in on 11th January – I bet he will be ready to go home soon and we hope it has all gone well for him.
Angela

[Ang287Participant]

Hi Carol
My husband is just a week behind you. He goes in the following Monday and has Melphalan on the Tuesday and stem cells returned on the Wednesday. Good luck for your treatment and let’s hope you both have a long remission after this.
Best wishes, Angela

PS I wish Graham was going in on Sunday too so that he would be recovering sooner ready for a nice Easter and Summer.

[Ang287Participant]

Glad to hear M is home. Your husband’s spreadsheet takes me back to last May when my husband came home with 2 carrier bags full of drugs ready to start his treatment last May. He is an IT teacher so the first thing he did was make himself a spreadsheet and I went out and bought him a flat screw box that had different sized compartments in it for various sized screws and nails in it with qa see through lid and he labelled up about 7 compartments for different times of the day when he had to take his tablets. Some days it had 44 tablets in it! Filling it for the next day was his last job of the day and I always worried in case he felt to ill to fill it but he took control of it for the full 6 months of his chemo and it worked well. I wanted to buy 7 of these boxes so we had them ready for the full week but my husband said one was enough.
He also filled in a diary and if he had a bad day he would look back to see how he felt on that day of the cycle the previous month and he could see that things were gradually improving when reading back to the previous month. The time flew to be honest and now just a week off stem cell transplant. We are out for a night out with friends tonight as it might be a while before we will be visiting a bar again 🙂
Have a good weekend
Angela

[Ang287Participant]

Hi Sal
Sorry to hear your husband has been recently diagnosed and is at present in hospital. I hope he is home soon.
My husband was diagnosed in May at the age of 55 following 5 months of really bad bag pain which was getting worse. He had fractures in his spine and had really bad back pain which eased after a couple of months of chemo. He has now had the 6 months chemo and the the removal of stem cells (which took 3 days) and is due to go in for his SCT in 2 weeks. Since coming off his chemo his taste buds have improved and he can enjoy the taste of bacon again. I am now making him food that he really enjoys before he goes in and as his favourite is a biryani. He had a lamb biryani and naan bread last night from his favourite takeaway and really enjoyed it. We were unaware that there were foods he should avoid so he has been lucky in a way as he has just eaten what he has wanted to eat with no side effects. We know he will be having “clean” foods when in hospital but have no idea what these are so when he goes to sign consent form this Tuesday we will ask then. The 6 months have flown by very quickly and he has been able to carry on working part-time and also working from home and I have carried on full time but have saved my holidays for when he is in hospital soon and for when he comes home.
We have done things as normally as able since his diagnosis once his back pain started subsiding with regularly going out socialising with friends, going to karaoke’s where he likes to sing and we even made a family Christmas video at a recording studio at Christmas which was a treat for all the family from our youngest daughter which was really good fun – the sound of it is awful though!
I find out as much as I can about the disease and Graham regularly asks me to research things as he is too scared to google anything. This website is brilliant and we have been told to keep to this and go on websites where things may be out of date as things have changed so much in the last 10 years.
Best wishes to you both,
Angela
I hope your husband is home soon

[Ang287Participant]

Hi Richard
Had problems posting on here last night so had to post to you elsewhere but just want to wish you good luck for today and hope your treatment goes smoothly and that you are soon on the way to recovery.
Best wishes from Angela and Graham

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