Oh Andy
What can I say? It's so difficult, and very disappointing, and every other emotion all over again….. I'm so sorry. But you just have to do what ever you can and hope it works for as long as possible, are they going to repeat the SCT as well?
Hope the Velcade works well for you.
Keep in touch and let us know how you get on.
Love Helen
Hi Keith
Yes, got to get the priorities right and go for the holiday, I totally agree.
I thoroughly enjoyed our trip, my sister was an absolutely brilliant tour guide and our well placed relatives meant we could stay with them for huge chunks of time. So we travelled round the North Island quite a bit. We hired a fabulous beach house for the last week so they could all visit us for a bit of r&r. My husband, reluctant to go initially, is now planning a return trip! Interestingly, I too want to go to Tasmania, not on this trip though as its easier to get there via Sydney, so maybe next time, with a flight there then on to NZ. My kiwi niece in law has never been there or south island so a plan is evolving as we speak!
How did today go?
Love Helen
Dear Keith
That's a bit of a 'b……' have you managed to get away as planned?
When I was expelled from the blood bank in 2010 it was because I had a pancytopaenia, the mm cells occupied the space in the bone marrow so the normal cells have no room to form.
What is the next step for you now?
Love Helen
Hello Everyone
Back home again, no ill effects except massive jet lag both sides of the journey, so I'm about to plan the next trip, better get the atlas out! Will sort out a photo or 2 when awake.
Was back to clinic this morning, still in complete remission, so started cycle 8 of maintenance Revlimid today.
Have read a few of the posts over the last 24 hours but lost the plot with them, hope you are all ok out there
Dai, hang on with your purposeful outlook,
Elizabeth, we visited the Hobbiton film set with the great nephews, very exciting.
David hope your holiday is as good as mine was, Tresco I'm told is a must see.
Teresa hope all is a bit easier for you at the minute
And Jo good to know you are still well
Love Helen
Hi Dai
Well….. There you go, all these bugs must be catching…….. Even over t'internet,:-) It was probably me! I've just had another chest infection last week too. Finished the dreadful doxycycline on Sunday. I'm just hoping for a clear week before we go away. You just get yourself fit and well by the time I get back. Glad Janet enjoyed the ballet before resuming nursing duty:-)
Love Helen
Hi Wendy
I'm sorry, I must have missed this bit of good news, glad to hear everything is going well, we must only be a few weeks apart, I'm at 8.5 now.
And yes Paul are you all set and ready for your SCT?
Love Helen
Hi Teresa
That's a very nice even colour for a previous brunette, I confess to not knowing what shade my hair was before I lost it as I'd been colouring it quite merrily for the last 20 years, but I found losing it totally devastating. I was quite surprised to see how grey it is as it has grown in but I'm leaving it like this for a while, see how I feel as it gets longer. My husband went white from red at about 40 and he too has been treated to concessionary rates, our son regularly used to get asked if that was his grandpa with him, much to our amusement.
I've not had an Indian head massage, I've resisted all the 'cancer' additional therapies offered around here, part of my 'ostrich' approach to this illness which a little bit of me still can't quite believe I have. Probably why I feel I need to give work a try too. What did you do before you retired?
Love Helen
Hello Mavis
You sound much cheerier today. Which is good. Any walking around counts when it's tough going and you are tired after the drugs and the disease effects, so well done. You are right to be just counting off the treatment months, and as long as you can keep as fit as possible and the pps drop you are doing the right thing.
Love Helen
Hello Craig and Etta
Glad to hear Etta is getting on ok, hope the appointments come through quickly and the SCT goes smoothly
Helen
Hello Eve
I'll be thinking about you this week, hope it all goes smoothly.
Love Helen
Hello Gail
Welcome:-/ to the site, I'm sure a carer will come along soon to talk to you. I'm another sufferer and can only comment from my own experience. You don't say if your husband was ill before his diagnosis, but even if he was, 3 months is a very short time to get your head round the impact of developing life changing disease and how it impacts on life. I expect he will be very angry, depressed, worried and in fact every other negative emotion you can think of, at this stage. You are bombarded with information, treatment, side effects and guilt from the minute you are told what is wrong and it takes a long time to adjust. I'm still adjusting 15 months on.
I would, however, have a word with one of the specialist nurses at your hospital as soon as possible, about the mood changes, dexamethasone alters mood and it can be quite difficult for some people to handle the mood 'drop' when you come off it. I found myself growling at everyone, like an angry bear, about the injustice of life, if it wasn't going my way, or any way! It is about anger and lashing out at everything because you cannot change the situation you have found yourself so suddenly in. I am aware that my husband shall probably be beatified just for putting up with me over that last year or so. 🙂 Specialist nurses can also direct him (and you ) towards counsellors which might be helpful. There is no harm in broaching this, in fact sooner rather than later if its bad. I hope this helps, let us know how you get on.
Love Helen
Hi Andy
What do you mean ' not commenting on hair or style' I think we should see what 'used' to be there, in fact all you chaps could do that! Or do you all fancy roles in eastenders:-)
Love Helen
Hi Teresa
So what colour was it before the sudden grey? I have a friend who did likewise and went from brunette to white at 35, surprising for us all, she too has stayed with it. I'm still undecided, it is temping to do nothing and leave it, but we'll see. I feel I want to go back to work, I wasn't ready to retire when I got ill and still think I have to go back and give it a go. It will be a phased return over some time and I'll just have to see how I get on, I'm eligible to retire now as I'm 57 but I've still not had any word from the pension people yet as to what the projected pension will be and I'm not going to go until I have the facts before me!
You do have to do things for yourself as your nurse has said, nice things, never refuse an invitation, do all those hand massages and spa sessions you have promised yourself and never got round to, it's one of the things which has kept me going a lot over the last few months. We went out last week with friends whom I've not seen for months and it was quite like old times, I managed to eat, stay awake and not discuss mm for 5 hours, a major achievement. I've also reached a point where if I've no infections, I can almost forget what has happened, a milestone I think. It must be a relief to you both that Peter has his pain under control, I've been lucky:-S I never had much pain, only a bit of upper back pain and it went away after the first lot of chemo to my great relief.
If only it were possible to drop in on you and pick up a box of plants, what a nice thought. I managed to upload the photo, had to use the mother ship computer as iPad does not have the correct software 🙁 And I have no idea how to upgrade it! The pattern will be scanned tomorrow and I have your address so will send it soon. Still no baby:-)
Love Helen
Hi Andy
Strange how your pps aren't behaving, there's individuality for you, I was told that a plateau is sometimes what they look for before sct, so hopefully as you are feeling better and the Rev and dex get to work things will improve. Keep in touch.
Love Helen
Hello Mavis
Hope you are a bit better today and not getting breathless again, if you are and your ankles are still swollen it might be an idea to to speak to the 24/7 haematology ward about this as it could get worse, the dexamethasone and other drugs have powerful properties and you might need careful watching in case of cumulative effect. Don't worry about bothering the ward, that is what we are given their numbers for, you need reassurance that everything is ok. 🙂
Also the down days after dex are very hard to endure, but they do pass and if the pps are dropping it's worth it. And the other problem:-( I do hope you have meds to make you go? There is nothing worse, it's so uncomfortable, so I'm wishing you luck in sorting this out over the weekend, hope you get some well earned rest and feel a bit more perky next week.
Love Helen
Xx
