[meganjaneParticipant]

Hi Harmony,

I am also, like Jean, a supporter, it is my husband Phil who has Myeloma. I also found counselling very useful, I initially went when Phil finished his first line of treatment and just before his stem cell transplant. I had another five sessions this year as I was finding it hard to deal with everything even though Phil was off treatment and doing well. Both times I went to my local GP and he referred me to a counselling service in our area, the referral only took a couple of weeks both times. Counselling has helped me enormously but I still find it hard to turn the worries off, my counsellor has helped me to find different ways to deal with these worries though so that don’t take control as much anymore. Yoga and meditation are also good ideas, everyone needs to find what suits them best.

The most important thing to remember is that everything you are feeling is normal and to not beat yourself up about having these thoughts just try to not let negative thoughts stop you from enjoying the here and now.

Megan

[meganjaneParticipant]

Thanks Peter, Phil was very interested to read this as was I, we will look into it further.

Megan

[meganjaneParticipant]

Thanks Stuart, it is good to know the new spam filter is working! If it happens should we let you know or do you check the spam filter to find anything that isn’t spam and then post it for us?

Megan

[meganjaneParticipant]

Hi Stuart,

I posted a reply to PeteSilver on my blackberry this morning and although it was very, very slow it worked fine but I have just tried to post a response to Greg on the Info Please! thread using my iPad in the Treatment forum and it does not appear but when I try and post it again I am told there is a duplication error and my post will not let itself be submitted. Is it lost in cyberspace somewhere? The iPad is quicker though 🙂

Megan

[meganjaneParticipant]

Hello Greg,

Richard is right, the timescale is different for everyone depending on where they are being treated, when beds are available, what the protocol is at each hospital, etc, etc. The consultant will be able to tell you more when you see them. My husband Phil finished his first line treatment towards the end of October 2012, he had his stem cells harvested at the start of December 2012 and then was admitted for his SCT on December 17th and got his cells back on the 20th. The length of stay in hospital is again dependant on the individual, Phil got a stomach bug while he was in hospital so his stay was 24 days but once he was home he stayed home and did not have to be admitted again. Other people only stay in a couple of weeks. If you are interested I updated a thread on this forum daily while Phil was having his transplant:

http://www.myeloma.org.uk/forums/topic/phils-sct-journey/

I remember the time between treatment ending and the harvesting process beginning being a strange limbo time as we were so used to going to the hospital so often for treatment and then suddenly there were no appointments to go to, strange but enjoyable :-).

Megan

[meganjaneParticipant]

Hi Pete,

Is the Hyperbaric Oxygen something you do on the NHS or is it available privately in your area? Phil and I saw a show about an athlete who used the chamber to help recover from injury and the athlete said something about it helps to produce stem cells, is that the idea behind it for you? I know Phil would be very interested in any further information you could give about it.

Thanks,
Megan

[meganjaneParticipant]

Hi Stuart,

Thank you for trying to fix it for us, it seems better on my iPad now – quicker, the scrolling is not as jerky and no Internal Server errors.

Megan

[meganjaneParticipant]

Hi Chris,

Glad to hear from you, Phil had his SCT shortly after you in December and Thursday this week was the first day almost pill free for Phil as he was finally able to stop taking the acyclovir, the only pill left is adcal once a day and then Zometa once a month. Phil will have his first childhood vaccination on December 23rd.

Megan

[meganjaneParticipant]

Dear San,

I am sorry your Mum is having a rough time but I am glad her pain is being managed. It must be frustrating for you to not be able to visit but take care of yourself so you are better soon and able to go and see her.

I am thinking of you, your Mum and your family.

Megan

[meganjaneParticipant]

Hello Stuart and Andy,

You are not alone Andy :-). On the iPad the forum has slowed for me as well and I often get an Internal Server error when I try and read a post. I have also found that it is now not really possible to view or post things using my blackberry unless I am very patient, the old forum worked fine on my phone but I thought maybe it was the age of my blackberry that was the problem. I haven’t tried it on a PC yet.

Megan

[meganjaneParticipant]

Hi Carol,

We can’t quite remember when Phil had these tests done but I think they were more to do with the SCT than with the harvesting. I think that you harvest the cells after your treatment has finished and then even if you do not go on to have the SCT immediately the cells are ready for when you need them. I am sure your consultant will let you know.

Megan

[meganjaneParticipant]

Hi Tom,

Phil and I were both sad to hear your news but we know you will face this part of your journey with your can do attitude that has so inspired both of us since we joined this forum.

Phil had Velcade with dex and doxorubicin as his first line treatment and had very few side effects and responded well to the treatment. Neuropathy, as has already been mentioned, is something to watch out for. Phil had his last doses of Velcade reduced because of the peripheral neuropathy in his feet and unfortunately he has been one of the unlucky ones and more than a year later the neuropathy is still present.

Megan

[meganjaneParticipant]

Hi Andy,

I hope the eventful holiday in Belgium was full of good events?

Good luck with cycle 22 and fingers crossed your PPs behave themselves.

Megan

[meganjaneParticipant]

Thanks Stuart, I do find them helpful, especially my own – so Phil and I can keep track of what has happened since his diagnosis 🙂

Megan

[meganjaneParticipant]

Hi Stuart,

The new forum looks very nice. I was wondering if the blurbs we wrote about ourselves could still be found somewhere? On the old forum if you clicked on the picture (avatar) that people had you could see the info they had provided about themselves but I can’t seem to find anything similar on this new forum.

I often found this information helpful if people chose to provide it.

Thanks for your help.

Megan

[Author]

Posts