[willjames2Participant]

Hi folks,

It’s been a while since I have been on the forum. I decided to purposely avoid for a while because I was a little fed up with thinking about myeloma constantly, although unfortunately is not that easy and it’s always lurking in the back of mind!

Although seriously, I’m in a good place at the moment and feel really upbeat.

I had my Picc Line inserted today and I’m ready for my Auto Transplant. I go into ward 44 at Manchester Royal on Monday 10th Feb, so, if anyone is in at the same time as me I look forward to seeing you.

I have not had any treatment or Meds (apart from growth hormone injections prior to stem cell harvest) since late November 2013 and feel great at the moment. It’s ironic really, I have never felt as good and feel ready to go back to work however due to my 3 weeks all inclusive holiday on the NHS that will have to wait a little while longer!

I hope everyone is ok and will be back on again post transplant with my tales of the unexpected!

Cheers

Scott

[dickbParticipant]

Good news Scott, It’s not much fun but as others say it’s doable. Hope it goes well,

Richard

[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

[willjames2Participant]

Hi Angela,

I should have gone in today (10th Feb) but had a phone call from the Ward saying that because of lack of beds currently they want to treat me as an ‘outpatient’ for a few days. This is the same situation as your Graham by the sounds of it.

I’m in tomorrow all day for the Melphalan and Fluids and then home and then return on Wednesday for the Stem Cell Infusion and then home again. Not sure when I’ll be admitted at the moment but they think it will be Friday. Apparently my Blood Count wont ‘crash’ for a few days hence the reason this is possible. How’s your Graham been feeling the last few days? Has he gone in yet as planned?

I’m happy to be at home for the moment and I have been told that I must watch my temperature etc and call the Ward if I feel unwell.

Cheers

Scott

[willjames2Participant]

Richard,

Thanks for the reply, appreciate the support.

Cheers

Scott

[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 Scott
How has treatment gone for you? Graham came home on Saturday afternoon and was in an isolation room for the whole time (apart from in an isolation room on intensive care for one day when he had a high temperature and atrial fibrilation). His treatment went well but because he had mild flu he was kept in an isolation room from admission to discharge so he never actually met any of the other patients on the unit. He only had vomitting for one day and has a good appetite and still enjoys food and can taste things normally. He is very tired and sleeping a lot. His hair didn’t fall out until about 4 days ago. The staff on the unit are absolutely brilliant and I am sure he could not have got better treatment if he was a private patient – apart from putting wet towels on him to get down his temperature. As I think you are only a week behind him you will be home soon too. Lets hope you both have a long remission.
Best wishes, Angela

[willjames2Participant]

Hi Angela,

I got home last night. I spent a total of 10 days in Hospital (1 night after the Chemo – 11th Feb) and then was I treated as an outpatient until being admitted on the 16th Feb. I then spent a further 9 nights in Hospital until coming home yesterday. The first night I was in a private room but when admitted I went on to the ward. Bed 24 and was roomed with 3 other people.

I tolerated the whole process pretty well really and went into Hospital with the mindset that I could be really ill and therefore anything less than that would be a bonus. My observations were pretty good throughout my stay. My Blood pressure was normal, No Temperature and 02 Saturation was always high. The only slight issue I had was an elevated Heart Rate for a about 3 days whereby it was up to approx 100 bpm where typically at rest I can be anywhere between 55 and 70 bpm.

I had no mouth ulcers, however, did have a swollen tongue which prevented me from chewing properly for a few days and apart from feeling sickly occasionally (however this was controlled with anti sickness tablets) having a poor appetite, and feeling very tired at first until my white counts started to rise and then I felt a little better, I have come through it all pretty much unscathed. It will just take time at home now to recover to full strength and tiredness will be my biggest obstacle going forward for a few weeks. However, now that I am home, sleeping in my own bed and eating proper home cooked food, hopefully it shouldn’t take too long to get back to normal.

As you say the Consultants, Nursing Staff and all the other ancillary Staff which work on Ward 44 are absolutely superb. I would not hesitate to recommend them and could not think of better place to be treated.

Now that it is done, I’m thinking about Summer and getting out and about and starting to enjoy life again. Its been Six Months since my diagnosis and I have come through it all really well, its been tough at times but with the support of my Family, Friends, Employer and the brilliant Staff at Manchester Royal who have got me to the point where I am today, its all been worth it.

Give Graham my best wishes and we’ll no doubt be in touch again soon.

Onwards now!

Cheers

Scott

[Ang287Participant]

Hi Scott, Hope you are continuing to improve since your last post. Graham has now been home for 2 weeks but very slow improvement. He is so breathless whenever he tries to do anything and has started feeling nauseous recently although manages to eat well (about half the portions he used to have). He didn’t want to go to MRI yesterday morning as felt so ill but they said he should go so we went quite late. He had bloodes done at 12.30 and then didn’t see the doctor until 2.30 and felt quite ill sat in the waiting room for 2 hours. I had to rush back to work after the appointment so didn’t even have time to pick up his anti-sickness prescription so had to go back there this morning.
Graham still hasn’t got out of bed yet today saying he is very tired but he says he feels his breathing is improving.
Like you Graham’s employer has been very supportive but Human Resources rang on Monday to say a letter was coming. 40 jobs at his college are being restructed and his is one of them. He can apply for redundancy by the end of this month or go through the process of applying for one of the newly created jobs. He can hardly get out of bed so is in no way in a position to make such an important decision so soon after his stem cell transplant. The whole process will be over by end of April and his sick note doesn’t run out until then so this is an added worry for him. His health is obviously the main thing to think about at the moment. We are back at MRI next Friday morning. His bloods were apparently good yesterday but didn’t have all of the results.
Hope you are getting better by the day.
Angela

[willjames2Participant]

Hi Angela,

I have been ok thanks. I am still a little tired however have started to do more this last few days or so. I too went to MRI on Friday for a check up. My Hemoglobin and Platelets were more or less back to normal however my White Cell count had dropped. My Neutrophils were 3.53 the day I left Hospital 11 days ago however were only 0.79 on Friday. The Doctor said that this can happen sometimes because the levels can be elevated with the Growth Hormone Injections whilst in Hospital. I had another injection on Friday before I left and then I have to return next Wednesday to check if the White Cell count is rising of its own accord.

I’m sorry to hear about Graham’s work situation, hopefully, all will work out well for him but your right the most important thing is getting him well first.

Give Graham my regards and tell him to keep strong.

I’ll post again soon.

Cheers

Scott

[Ang287Participant]

Hi Scott, How have you gone on since last week? Graham went back yesterday and like you his neutrophils have dropped to 0.8 He had an injection like you did yesterday and has to return next Wednesday afternoon. He is also a bit anaemic so this is what is causing his dizziness now and again. It is now 5 weeks since transplant and he is still very tired and a bit breathless. His anti-sickness tablets were not helping much so he got some different ones yesterday. Hope you both get your neutrophil levels up soon. Graham has now lost 2 stone since he had the transplant 5 weeks ago but had always wanted to get his weight down.
Best wishes, Angela

[willjames2Participant]

Hi Angela,

I went back to MRI on Wednesday and my Neutrophils had risen slightly but not by much, they were up to 0.83. I too had another injection and I have to go back on Monday for another quick review. I feel pretty good though and I have started doing things like walking the dog and I even tidied the garden yesterday and cut the lawn, however I was tired afterwards. I have had no sickness feelings for a couple of weeks now, however I have had a bit of a cold which seems to be on its way out thankfully.

I am planning on a ‘phased return’ to work soon (just a few mornings a week) initially and then I’ll see how I go. I also had discussions with the Doctors about a possible ‘Mini Allo’ Transplant within the next few months, which if I am honest I could do without so soon after this transplant but it will possibly give me a much longer remission when done it tandem with the ‘Auto’ that I have just had and is the best option really for someone of my age.

I have also lost approx 1 and 1/2 stones since being first diagnosed but this is welcome because I was too heavy also.

I hope Graham gets his appetite back soon and then his strength should return. The one thing that I do know (although I’m still a novice when its comes to the whole Myeloma thing) is that everyone’s experience is different and the disease affects everyone differently. So with that in mind Graham shouldn’t get too disheartened if he seems to be taking slightly longer than he expected to get himself right again and back to normal. I have been really frustrated in the past few months especially when I could hardly move with my back however you just have to roll with it and it will all happen soon enough.

Best Wishes, keep positive and we’ll be in touch soon.

Cheers

Scott

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