[HelenParticipant]

Dear David, Eve, Dai, Paul, Debs, Scott and Tom
I'm really sorry not to have replied to this post earlier, I am sooooo grateful for your very sensible advice and suggestions and it is good to see that others have had different experiences to me.
I have an interview with my manager next week and am getting just a little anxious about it, so am exercising a new right I have invented.
It is the RIGHT OF THE OSTRICH,
This means I do not have to think about the stressful stuff until its over:-P . Though I have got all the paperwork in order.
So if you will bear with me I'll let you know how it goes next week, I'm off to an auction now to buy a cake stand!:-)
Love to all and thanks for just being there.
Helen

[HelenParticipant]

Hello Susie
It's a terribly difficult time and I do sympathise, I remember it clearly, it was Christmas 2010 for me. You hardly dare think about it, but it wakes you up at 4 in the morning as you wonder what the result is going to be. Be brave, whateve happens you will cope with it. In the mean time do nice things and enjoy the weekend as much as possible. What day do you find out? And do you have someone close to take with you? To take notes and listen with you or even record the appointment. I'll keep my fingers crossed that you are still a way off treatment. Keep in touch.:-)

Hi Ted
Good to see you again and glad to hear there is no need for you to start any treatment, what a relief for you 🙂

Love Helen

[HelenParticipant]

Hi Eve
You are right, head is now back out of sand, down day is over, (I think it's the zometa effect) and I'm sorting out the packing, toothbrush, sunnies and knickers. ( i like travelling light ;-)) will borrow all my sister and nieces in law stuff when I get there8-) However the medicines bag is quite large:-( only 4 weeks to go:-D 😎 🙂
love Helen

[HelenParticipant]

Hi Teresa
I'm sorry Peter is misbehaving, I don't think it is just a boy thing, I think it's a bit about having some choice and control over a life which is going headlong in a direction you don't want to go! I'm really fed up with all the poking and prodding, I've had a lot of bother with my guts since the transplant and subsequent addition of revlimid, and I'm hoping it will just settle down by its self, but I've been told I only have a few weeks left before they think they should investigate it, and I'm very tired of being ill. ( I've had a bad couple of days) and its tempting to be an ostrich and pretend everything is fine. My rational sense says this is wrong and I have to be honest with them when I go and do 'whatever it takes' to quote Dai. Anyway, there you are, I've only been on this road for a year, just how grumpy and cantankerous will I get over the next few years……. (I'm planning on being here for years:-) )
You are very kind about the photo, I've about an inch and a half of hair now, going to the hairdresser for another consultation next week, and hopefully a style of some kind, though i think I'll have to forget the colour as my skin is still so sensitive. I'm 57 and the eldest of 4 girls. The occ health saga continues.
Love Helen

[HelenParticipant]

I suppose you have just been getting on with stuff and so it decided today was the day to settle down, still it's good to know the reason behind the last few weeks pain. Hope it stays settled for you. I looked up the dexamethasone side effects in the products characteristics manual too and it says hyperhydrosis is a known side effect, doesn't give a cure though so not much help, I'm afraid. Hope you get some sleep tonight
Love Helen

[HelenParticipant]

Well!!!!!!!!

I have no words! You just hang on in there and lets hope they can fix the pain now they know what the problem is.
Love Helen

[HelenParticipant]

Hi Teresa
Combined reply is fine. I do hope next week gives some workable treatment for Peter, you must be so worried. My appointment was almost routine, bloods, zometa, prescription, 'how are you ? see you next month'. Then a brisk walk the mile and a half home, calling in at my daughter on the way for a quick coffee.

I had to laugh when I read your post…. My dad was 89 when he had his valves done! He was the oldest patient they had ever done this procedure on in the north east… They gave him 6 months if he didn't have it and 70% chance of survival if he did… He opted to risk it, was in hospital for 5 weeks and was singing Christmas carols round the piano a week later, and celebrating his 90th birthday. 18 months on he moans and groans about the back and shoulder pain he developed since!!! 😛 As soon as I come near though he stops and says he mustn't whinge 🙂 He managed to get out in the garden a lot last summer but I think the shoulder is worse now so we'll have to do it.
Love Helen

[HelenParticipant]

Whoa Dai, you are lucky Janet is so on the ball, Horlick's (ugh) only for you now to help you sleep:-)
Helen

[HelenParticipant]

Hi Jean – they are beautiful perhaps their mums just share good taste!
Love Helen

[HelenParticipant]

Hi Teresa
No the snow didn't lie and as we are on the edge of the city it was too warm for thick frost so here's hoping. I have tried alliums every year for the last decade with no long term luck except for 2. One is as femma as a spring onion and the other just grows leaves, no idea why, i normally have quite green fingers, but there, sometimes thats the way of things.
My dad had double cardiac valve replacements 18 months ago and all the paraphernalia for mobility arrived in their house- my mum was fit to explode, it took up so much space and made it like a hospital. They got rid of some of it quite soon as it became evident he didnt need it all and learned to hide a lot when not in use, it was quite funny really but it has made life easier for them.
Keep your chin up, I too am at clinic on Tuesday, so will be thinking of you.
Love Helen

[HelenParticipant]

Hello Mavis
I wondered where you had got to, you have always been there when I've posted so your absence was very strange after all this time.
I'm glad to hear that things are getting sorted so that life back at home will be easier for you, but you will be missing the busy time in church, time for a rest. The tiredness does get a bit easier, and it's worth it if the drugs are working for you. Thinking of you. Hang on in there.
Love helen

[HelenParticipant]

Hi Ian
No……. But only been on it for 4 months as induction chemo and the last 5 months as maintenance. How long have you been on it and what neuropathy do you get?
Love Helen

[HelenParticipant]

Oh Dai I didn't realise that you already had arm involvement. Stress fractures need very little 'stress' sometimes to occur. I'll think of you sitting in clinic while I too sit in clinic and will wait to hear how you get on.
Love Helen

[HelenParticipant]

Hi Dai
I think you should really whinge about your shoulder when you next go. Mm might be smoke screening and there are lots of really painful shoulder things- like frozen shoulder, impingement or painful arc syndrome, all of which are simple (as in not 'serious') but need lots of pain relief and physio because they can mess up normal life and need to be excluded because they do recover with the right treatment. With your other movement limits you could do without this. I too am surprised you haven't had it x rayed, could you have fractured it?
Love Helen

[HelenParticipant]

Dear Teresa
I'm so sorry to hear that the trial has failed so quickly for Peter, that must be so hard to bear. What is the next plan for him?

I finished all the pots last weekend, planted with alliums and lilies, then we had snow for 3 days! Heaven knows what will grow now:-P
Love Helen

[Author]

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