[eveParticipant]

Hi Phil
Thanks for the good wishers,cannot book a cruise yet,even though we were hoping for a last minute short cruise from Dover.Slim has not heard from Kings and we have a number of hospital appointments in line,if I could get some dates,we might be able to get away.we do need this break.

I am finding this remission is Like a new ball game,but someone has forgotten to tell us the rules.
Slim expected to be feeling much better,which he is not plus it,s hard to know if his symptoms are any thing to do with Myeloma or just coming off chemo,he thought he would be able to reduce his pain medication,but this has not worked,at the moment his legs and stomach seem to be his main problems.feeling sick and off food,plus pain in his legs,Its like watching someone walk on hot coal.:-/
It is strange you wait so long for that magic word,but once you cross over
every symptom becomes a worry,I suppose as time goes on,it will be come less of a worry.Thanks again for every ones good wishers Eve

[DaiCroParticipant]

Hi Eve,

Some people manage quite good health when in remission periods, some even manage to return to work and travel freely. I think it is down to the amount of bone and other damage you accrue… that and the levels and types of medication needed each day.

I have quite extensive bone damage… and while I can walk unaided my back soon seizes up after ten minutes of shopping mall stresses. Twenty minute in a coffee shop and I am good to go again… until the next seize up. I reckon I get about 400 yards to the gallon.:-)

Then there is the meds… they can make you feel lethargic, bilious, wheezy. woozy etc. What's Slim's daily intake… quite heavy I imagine.

I take morphine, gabapentin, bonefos, pyridoxine, lansaprazole and calcium… the first four twice a day with the morphine on time release. The other day I got progressively worse as the day wore on… feeling bilious, aching, disoriented and flu-like. I drove my Grandson home (we have him after school a couple of times a week) and I didn't even get out of the car at the other end, desperate to get home and into bed. Janet got me settled and reminded me to take my meds,,, I reached for the little ceramic pot I use to collate my pills… to find it already full :-0 . I had prepared my morning medications, including the stomach steadying lansaprozole, chewed my calcium tablet and left the others untouched. Its happened before (about 3 times in all over nearly four years) and I should have recognised the symptoms. Its genuine cold turkey… after one missed dose… so for me it shows the reliance of my body on the meds I take and the effect they must have on my constitution.

My youngest daughter is working in Fuerteventura for the winter (as part of a resident duo in a large resort hotel)… in April she will move to Barcelona for the summer and I would love to go and see her… but I know it is highly unlikely. My bone damage, the DVT and MM per se makes flying almost impossible but I have considered driving (Via the Santander ferry) allowing 4 days there, 4 days back as part of the adventure… but Janet is dubious. Driving down to Fishguard last autumn made my leg blow up and made the holiday far less enjoyable than it could have been,,, so Barcelona?

I have a half-baked idea about hiring a camper-van and roping in my brother and his wife… but we will see.;-)

I do hope that Slim finds some sort of equilibrium and that you manage to both get away and enjoy the whole experience. What's next for Slim treatment wise… what's the word re SCT?

Take care.:-)

Dai.

[eveParticipant]

Thanks Dai
The penny has dropped.
Slims tried to come off his pain tablets a few times plus since not being on chemo he has forgotten to take his tablets going to bed a few times,specially when he was on ant-biotics ,because he had to take them on an empty stomach and his other tablets with food,he is the one that controls his tablets,as he feels I have taken over the rest of it.:-( so much for my nursing skills,he calls it nagging.

Slims on Oxcontin 30 mg twice a day its a prolonged release but is addictive
plus has liquid form and Adcal-D3 Omeprazole amitriptyline the consultant says the bone pain should be better because of Zometa.Slims a bit like you when it comes to shopping,needs trolley to lean on and cannot do more than 15 min,usually goes and has a coffee,standing still is the worst,
I thought coming of the Dex,made him loose his appetite and energy,just seemed to take a few steps backward coming off Chemo.

Dia have you thought about a cruise to Barcelona then flying back,when Slim had his hip replacement done we went to Egypt I could not fault the service in looking after him,he hated being driven in a buggy,made him feel old,and in Egypt he could not stand so wheelchair came out could not have had better service.
A motorhome is hard work,but driving a car is easy,I can see why Janet does not fancy driving,in 20 years I have never driven the Van home or abroad.
Slim was so ill had no choice,took a deep breath got into a 4 ton van and drove from west coast of France to home,must say I am very proud of myself.
would not worry again about it. LOL'

Thank you for info,set my mind at rest ,will keep an eye on Slims tablets
Eve

[DaiCroParticipant]

Hi Eve,

Perhaps Slim has suffered from a few bouts of 'cold turkey' without realising it. I know that since being on morphine my short term memory has been shot to pieces… I dread forgetting my clexane injections but fingers crossed I haven't done so this far.:-) I collapsed at home with a pulmonary embolism once… and once is enough for me.

I think flying is out for me… as much for insurance as my condition but driving by car is a possibility. 4 hours to Portsmouth from Nottingham… a ferry to Santander or Bilbao and 5/6 hours to Barcelona. Making the trip with my brother and his wife to share the driving and Bob could be my uncle.

Now we are dependent on benefits everything has to be considered twice… a few years ago it was only a matter of when… not if or how.:-(

Dai.

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