Well done Eve, so glad you got there, how are the family? can't wait to see some photos. I think I'd spend a day or 2 looking at the sea, it's so beautiful, we stayed in a beach house for a few days when we went, and it was just fabulous to get up and see that view every morning. It's so encouraging to know you've finally got there.
Love Helen
Hi Vikki
Good results indeed, my neutrophils have hovered round 1.5 since transplant, and WCC around 3. So he's doing ok. It's just slow and steady from here on in. It will almost be boring as recovery is so slow. But we like boring, it means nothing awful is happening!:-)
Love Helen
Hi Ali
I've had tummy trouble since the beginning, we were never sure what was the cause but now I'm just on the Revlimid I know how it affects me now and there is a pattern. But it is worth it if it keeps the mm at bay.
As for the itchy head, I had big problems with the wig, it itched at the sides until I couldn't bear it any more. One day I took it off and had blood streaming down my face where it had irritated so much. I think the hairs don't always grow through properly and they stick under the skin and try to ingrow a bit, so it itches a lot. I have no trouble now though:-) I think there was much info given to me when I asked about this last year on one of my threads.
I decided to go wigless, see attached, just before Christmas last year. I had lots of mascara, beautiful dangling earrings and lots of moisturising hair stuff, Aveno, and some Italian stuff which felt fabulous and was full of olive oil. I was told by one of my friends that I looked like a London artist and just flaunt my short crop as if I'd chosen it! So I did.
We had a lovely weekend, walking round the town and visiting the Christmas fairs that were on, hoping the water levels don't get any higher.
As for the cough,! 🙁 I'm really bored with it. It's at least 103 days now since I first noticed me coughing, my family, work mates and friends have had to put up with me sounding so disgusting for months now, it's getting less but its still obviously bad. I suppose it'll go eventually, one thing I'm very glad about is that no one else I know has got it so I didn't pass it on to anyone else thankfully.
Love Helen
Hi Vikki
Well done, a mile stone at last, hope he stays there! Yes it's a bit of a funny thing coming home, I got very down after a few days too, I think it was to do with all the hype before hand, then you sit there …… and sleep….. and think……..then you decide ' I will go and make some tea' and you get back to bed/ sofa and find just doing it has nearly finished you off. The tiredness can be crushing afterwards. And the loneliness even when there are people there. I don't think it is easy to put into words the feelings of insult to the system that you've just experienced. You can't quite believe how ill you are, especially as you were never that ill to start with! You actually consented to let them make you feel this way. Getting out to walk round the block for 15 minutes every day feels like a Himalayan trek. All wrapped up and tired with a capital K when you get back. I thought I should be sponsored to walk round the block sometimes, just to give me some incentive.
I'm really glad you've got this far. I hope Col keeps going ' on and up ' to quote another!
Hehe Tom, yes you, I had my back and shoulder xrayed last week too, I think it's a frozen shoulder but they said they'd better make sure, fingers crossed. ( means I get off carrying the suitcases and the shopping, always a silver lining:-) )
Love Helen
Hi Andy
Good results, my neutrophils are only 1.4 and I'm told I'm showing good levels. see you soon
Love Helen
Hi David
Really glad the anniversary plans all came together and you clearly had such a good time, so exactly who is in that tub with you, none of the girls looks old enough to have been married THAT long;-)
Love Helen
Dear Ali and Babs
I'm just back from weekend away, Peebles this time. Very cold and crisp.
Anyway, I've now had a year on the Revlimid as maintenance and I just thought I'd put in my 2p worth on the time of day for taking it. Because it makes me very tired about an hour after I've taken it, I find it much better to take it at about 7-8 pm , that way I can have a couple of glasses of water or tea and not be up all night either. :-/ As for the tummy problems Babs, it does settle down, eventually! 😛 I find a diet of many vegetables and much fruit is the only option now, and definitely warm water is easier to swallow in large volume.
Hope this helps and how is your mum Ali?
Love Helen ( still coughing)
Not long to go now. you must be so excited. Have a great holiday Eve, the sleep outs are ok, my nephew has one out there, yes it is a shed but if the weather is good you won't notice:-P Tell slim you can put in miles of walking on a long haul aircraft, and it helps pass the time too:-) love Helen
Hi Keith
Just a note to add to the others, hoping this treatment goes well for you and keeps the mm at bay for a long time. Hope you aren't too tired after the infusions
Love Helen.
Hi Sarah
Totally personal decision. Very scary times, its not pleasant, I took 11 months to recover to a real sense of 'wellness' but I'm pretty good now. 15 months since SCT, in complete remission, on Revlimid maintenance and back to work full time. Recent posts by Vikki and Chris explain the process very well, and Sue describes other things to expect. You don't say how old your mum is, where she will be treated or if she has other health problems. These are relevant considerations and the whole 'cancer' thing, plays havoc with your mind too. I regard it as a large concrete block which accompanies me everywhere. In order to do anything I have to climb over it or go round it to do stuff. If people ignore it too much I get annoyed and if they talk about it too much I get annoyed as well. More work needed here i think. I'm trying not to let it intrude but it is part of my life now. However I do more things now to distract myself and tire myself out, so life is ok.
So ….. clearly still have issues about it and I am an optimist who doesn't really get depressed. I hope she chooses the most appropriate route for herself. The important thing is not to regret whatever decision she makes and to support her throughout it even when it gets really rough. We need our supporters sooooooo much.
Love Helen
Hi Ali
Good news for your mum and the rest of you, and hope side effects are few, I have just completed my first year on Revlimid since my SCT. I'm still improving even now.
Hope all this progress continues and life returns to a more even keel.
Love Helen (still coughing)
Hi Eve
I think they are all correct too, while you've concentrated all your energy on Slim, your body hasn't had a rest. Now that the constant adrenalin rushes are over, your body is trying to regroup. This holiday is what you need, go and enjoy it, I hope you have a magical time with your grandchildren. When do you go?
Love Helen
P.s. next year just write everyone a cheque, its less stressful, not as much fun but they'll understand that you can't do everything. 🙂
Hi Vikki
Sounds like he's doing ok, I couldn't walk anywhere when I was in hospital, so going up and down stairs is good. I spent 2 weeks going from bed to loo, and back only!:-( No sitting in a chair, no tv, no reading ,knitting, or magazines. I used my phone and iPad a bit. It took me all my time to shower every day and drink enough to keep the nurses off my case. I lay on my bed snoozing and telling myself I just had to let it go its course and I would be OK eventually. The first walking I did was the day I went home and the blessed Tim had to almost carry me. Though I was determined to hang on to my dignity, a wheelchair probably should have been my first option. Chin up
Love Helen
Wow Chris
Doing well, eating and drinking 🙂 make the most of it, back numbers of old Dallas to watch? congrats on getting out.
Love Helen
Hi Vikki
I didn't have much gcsf after SCT 2-3 doses I think but I can't remember and my diary is packed somewhere while our bedroom gets decorated! Anyway, I was on lots of morphine for weeks so the pain was usually under extremely good control (I'm a nurse, I don't do pain 😛 ) However, prior to my Stem cell harvest, my first posting on this site was after that lot of gcsf – i was in such terrible pain for a lot longer than I or anyone else had expected, and as I kept popping the painkillers I wondered when I'd ever feel better. I felt as though I had been kicked by a horse and my ribs felt as though they wanted to jump out of my chest, it was a very weird feeling, not at all pleasant! 🙁 I do hope Colin improves over the weekend, make him take pain relief. Look after yourself as well -now is your chance -when you know he's safely parked:-) give the credit card a bit of grief:-)
Love Helen
