Hi Tom
How's the gcsf going?feeling achy?
Love Helen
Dear Mari
Nice to know Steve is feeling a bit better today, lets hope it continues. Hope you are enjoying the weather.
I'm not heading for SCT this time round apparently. It seems we are saving that for a rainy day! I'm quite grateful as I was one of those people who took almost a year to get over the first SCT. I was proper poorly and when I found I'd relapsed was terrified about the prospect of going through it again. I must say though, I would do it again if it was the only or likely to be best option left. I'd do anything if it would enable me to stay longer.
Love Helen
Dear Mavis
Never vain, pragmatic I say, and hair dye cannot be to blame otherwise more women than men would have mm……….. unless they are all lying to us…….:-D
Love Helen
Hi Tom and Michelle
What a lovely bit of good news for you both, long may it continue.
Love Helen
Dear all
On the up again after the first Velcade cycle seemed to drop both my mood and temper somewhere else, so thanks to all of you for your replies.
Hello Mavis
How are you doing ? A bit better I see as you are back to doing some services, this must please you a lot. I'm finally feeling better today, not that it is too bad so far really, but adjustments are always difficult. It's all the tummy and gut trouble that causes me grief but if it works then….it's worth it in the long run.
Dear Ali
your mum must nearly be on her way back, I expect she's had a great time, she needs to book the next one ASAP so she has holidays to aim for. ( I have Glastonbury to take my 2 to at the end of the month and we will have a family holiday for 3 days buying the camping equipment and stuff! Hey ho not quite buckets and spades but fun -) re the knitting … Thank you Gemma was very pleased with her jumper but I confess there is the wool for at least 12 jumpers hiding behind my sofa.! I call it extra insulation! Just hope I have hands that work for long enough to knit it:-P
And Vicki, don't worry I plan to get down to the West Country again this year but after the schools are back I think! You must book a holiday, do it now! Don't leave more than 2 months between booking and going so you get insurance easily but do it now. Let me talk to that Colin……. He might not realise it but HE NEEDS A HOLIDAY….. Can he hear me shouting at him yet? I have loved my holidays more than I ever realised. They are so precious to me now, that's why I'm having lots. Our poor cat doesn't know who he lives with now as so many different people feed him these days!
Yassou Andy and Kalinikta
I love the way you and Steph have just got on with things, you are definitely my hero as you give confidence while on all that medication, and I'm very envious of our chemo day unit. Sounds way better than ours. When do you have your op? Got a date yet?
Vecade is ok ish so far. Will Steph bring you up to Newcastle for an hour or 2 one day soon? We could meet for coffee?
Love Helen
Hi David
Nice pics, I can see your fractures very clearly, what a lucky chap you are not to have been paralysed!
Love Helen
Ha ha Eve Alpha female indeed, it takes one to know one:-)
And Rebecca, I'm glad to be of help, we all have to take steps on this journey in the most comfortable way for ourselves, we need to be a bit strong to hold ourselves together and wear the shoes most appropriate.
As you know by now my varied nursing career finds me working in a psychiatry setting now and so I'm very aware of the CBT and counselling approaches which people need and use. Insularity is a great protective measure, I use it a lot and am known for my 'ostrich' approach when things get a bit tough then I ask for all info when I'm able to take it in. Ours is a lonely road, I get a lot of help from this site and some of the ladies in our mm support group.
Mari, Pauline, Vicki I wonder if it is a gender thing, women are generally the carers and I'm caring for my lot by not exposing them before needed to anything too horrible. You are all caring for your boys in your fierce protective ways, just keep going, they are very lucky chaps.:-D
Love Helen
Dear Pauline
I think I second everything the others have said, But I am a patient and I see things from a different perspective. I hope it doesn't seem harsh but here goes!
I don't take my husband to consultations…… I need my wits about me when I go and I don't want to be looking after him and his needs too. I also don't think it is a partnership thing , I'm me and I make my own decisions, he understands and will come with me when I let him but I'm not ready to lose all dignity yet and him being there is part of that.
I don't want him to ask questions that I'm not ready for the answers yet. Sometimes there is only so much information you can take in at one time, especially in the early days when you are trying to come to terms with things. Medical staff are aware of this need for relatives to know what is going on and patients being a bit ostrich like so that might be why they are a bit hostile. They will try to go at your husbands pace, not yours.
The carer has a tricky path but being the patient has to be worse, you have the pain of watching the people round you suffer through no fault of your own and also the pain of the condition and its treatment and trying to appear as normal as possible for as long as possible when all you want to do sometimes is curl into a ball and disappear.
If I were you Pauline, I'd write a list of the questions you want then ask your husband to ask them , not you. He must ask for all results and letters if he wants them,…. Entitled under freedom of information then you can get a better idea of what is going on.
I hasten to add that I love my husband very much but in this matter we do not discuss,…. I dictate, it is too important for my physical and mental health for me to relinquish what little control I have over my health decisions. Above all else, I have to trust the people who are looking after my treatment, so I don't want anyone else interfering, however well intentioned.
Hope I didn't set the cat among the pigeons here! Good luck
Love Helen
Hi David
Yes of course! It's interesting to see what others are experiencing. I'm on cyclophosphamide 500 weekly as well as the Dexamethasone and Velcade. I've had my first 2 week cycle now and just started my week off today. All my bloods were ok, no paraprotein detected and sflc 155. I'm hoping they will drop to zero again in a month, here's hoping.
I'm not too bad, having had Revlimid for the last 18 months I've always been tired but this stuff feels rather different. I don't like the constipation already! And I've lost my sense of taste. And my skin is as dry as sandpaper, so I'm back on the moisturising trail again
Today I've been a proper madam! No patience with anyone, quickly bored and a serious feeling of irritation and a need to irrationally do things to prove to myself that I'm ok! Clinic this morning and I'm the one complaining about the chemo day unit again!
I'd forgotten how slowly the Dex settles down qnd how it can alter you mood.It will be nice to sleep properly again, well I'm hoping.
I can't believe you would deliberately annoy your wife, what on earth would you do to exercise her wrath, don't you want a safe life?
Love Helen
Hi Maureen
Shame about Wimbledon but I'm glad you are going to get to the wedding. Is his mobility improving?
Love Helen
Hey David that's great news I must admit my passport expired last month and I've not renewed it yet, you give me great hope, it's that Andy doing it on all the meds he's on, what a star!
I've just finished my first stint of velcade now, I'm ok but very sickly withit, ugh! Not as exhausting a drug as Revlimid was which I'm rather enjoying being off now.
I agree with David too Vicki, I think Colin is doing a lot, it took me a whole year to get back to work and then they let me return gradually over 6 weeks, it's very difficult getting the balance right. I watched the gardening being done today, and because I was wearing my sun hat they let me carry the basket and pick the rhubarb, but nothing more. Tomorrow I hope to tackle the hedge, while they aren't looking!
Love Helen
It's tough sometimes isn't it? I'm sat in a deck chair watching my husband who is not keen on gardening, do it for me. I'm trying to bite my tongue as he does it so badly, but I'm on a dex down now and can't do anything! I hate being idle, it's so frustrating.
When you get neutropaenic it can make you feel a bit crap too.
I didn't have the cyclophosphamide priming – there were no beds for admissions on the day planned and rather than lose the SCT slot provisionally booked for me they gave me double doses of gcsf for a week which worked ok.
The boys are right about the immobility on the machine though and the difficulty having a pee!
H
Hi Tom
I'm on my second lot of cyclophosphamide now ( I had it at induction) . Its not supposed to make you feel very sick but im unlucky here. The melphalan for the SCT is also mustard gas derived so you are getting a taste of the next stage now, good idea to make notes on how sickly it makes you and take the anti nausea medicines accordingly. Get lots of rest and as good a diet as possible over the next week.
Love Helen
Thanks San I'm having a better day today. Re day case units?? I can't understand why it is so difficult. I suspect not enough people have put pen to paper for fear of making a fuss! And I think they arean area which has evolved and not been planned. I'd like to hear from any one who has attended a really good chemo day unit , tell me why where etc and also if anyone has been to the Cromwell ……. They might like to private message me for fear of us all feeling acutely jealous as I have heard that there……….it is fab…..u….lous.
I'm amused by the aunty thing, I did have a lovely aunt who knitted for us. Now I am the aunt knitting for everyone! She'd be amazed! Just shows what goes around……. 🙂
And yes the weather is nice here too though I'd love to be in Cornwall again… I just love it. My favourite place.
Hope mum does ok next week where is she at with er treatment now?
Love Helen
Hi Wendy
I'm not doing much at work! My group are all very good and we have a big study coming to a close after 3 years, I am the gaffer and have trained them sooooooooo well. I'm delegating like mad . Doing training bookings and all the funny jobs no one else wants to do. Like cleaning the fridge and posting those notice which say 'if it looks like a hazard to my health they will find it filed in the bin' I'm particularly whirlwindy on a dex day too. So there is no quarter.
I am being sensible I plan to be taking 2 days holiday a week from now and have treatment after work on Tuesday and Friday morning. The boss says just do what I can, it's beginning to bite some days now, so I'm suspecting I can't keep it up. Yesterday was bad but I'm ok today, even did a couple of hours gardening after going out for lunch.
Hope you get to your triathlon, keeps you focused.
Love Helen
