[andygParticipant]

Hi everyone I hope your all doing well.
Today I started my 21st cycle of RCD. My last 2 PPs readings, after them rising, have been stable at 25 so I'm staying on my current treatment for at least another 4 weeks. I have been taken off my anti-fungal drugs due to my liver function test not being so good. I'm hoping that's the cause because I'd only been on them for 4 weeks. Got a blood next Wednesday to check. Mind you I'm not surprised I'm starting to have problems after just over 2 years of popping all these strong chemicals if the MM doesn't get me the drugs surely will. Oh and I've just got over an UTI.
Other news – I survived my latest bout of travelling 😎 Our week in Kefalonia Greece went well the weather was just right. We had a good relaxing time and I returned healthy – well as healthy as I get. We then popped over to the lakes for 3 nights to celebrate our second wedding anniversary the weather was ok we had a bit of everything but we had a great time.
Then it was off down to Nottingham for the weekend and the beer festival It rained whilst we were at the festival and it was very heavy at times but we managed to have a good time. I was starting to be a bit weary by this time. But I blame that on the UTI not the beer 😉
My back has recovered from it's op and it is less painful though it still aches a lot if I stand or walk too much.
We are now looking forward to our next trip at the end of November. 3 nights in Ostend Belgium plus a night on the ferry there and a night on the ferry back. Of course that all depends on me staying healtyish. I'm sure the Christmas markets will get some stick whilst I rest up in a bar or two. That will complete our trips for this year phew!
Next year plans to date are a couple of nights in Rothbury Northumberland Jan/Feb not booked yet and 3 nights in the lakes in March. Health permitting of course. I wonder which will give up first? My money supply or my health?
Warning – I'm on 4 days of Dex so be prepared for a few nights of Dex rambles.
Anyway that'll do for now as I'm going to try and get some sleep now.

All the best everyone.

Every day is a gift.
Grab it and enjoy it the best you can.

Andy & Steph xx

[eveParticipant]

Hi Andy and Steph

Well it's 02.28 am,and I am not on the Dex:-P think I need it to give me some energy:-)
Slims been up as usual I wake up and worry about him,he,s now in bed asleep,and I am wide awake listening to the storm,grateful I am not in a plane or on a ferry!!!!

Travelling to Canterbury today,Slim needs platelets they were 13 on Friday,so wrapped him in cotton wool all weekend,just in case of fall or bleed,dreading travelling as the road has lots of mad foreign drivers on it,they are good at side swiping,the lorry drivers just do not see you.,and the back roads will be blocked if this storm reachers it's height at 6 am.>:-(

Have you had any full body scans or MRI lately ,as your pp are fixed at that level for a long time!!! Might be worth finding out what is going on in the bones,that is if you want to know!!! I have mentioned it because as you know the only true way to tell with Slim is a BMB,just had one waiting on results!!!!:-S
Well just going to make a cuppa Andy,and watch the storm!!!! Love Eve

[bandityogaParticipant]

Hi Andy

You have been busy travelling. It's good to hear you can enjoy holidays. Ian and I are thinking of a holiday in the UK for our first holiday to see how it goes. Ian is now using crutches. The awful noise from the zimmer gives me a headache.

Ian had an mri scan on Saturday to check on his back and also waiting on blood results. Hopefully all is well.

21 weeks of chemotherapy. No wonder your body is starting to run down. Are you sure it wasn't the beer?

Hope you get remission soon.

Every day is a gift

Maureen

[tomParticipant]

Hey Andy

Now look I am drug free and in remission and am sure I could not keep up with your drinking and Holiday exploits Lol.
Pleased your back is getting better its been a long haul for you my Friend and am sure you will get this "Remission" and be drug free.

Carry on Carrying on Andy I know you take it as it comes so Enjoy

Tom Onwards and Upwards

[sanParticipant]

Hi Andy and Steph, so pleased to hear that you have been having a good time with your travels:-D keep it up and congratulations on you 2nd wedding aniversary thats fab8-) San x

[DaiCroParticipant]

Hi Andy,

Your travels are varied, I'll give you that… but you always seem to return to the Lakes (We love them too). I have done my share of travelling and most of them have been fairly relaxing but it only takes a few days in the Lakes for us to feel relaxed and recharged. Do you move around or is their one special place?

I'm glad to see that the operation seems to have been successful and well worth the accompanying aches and pains of recovery. As for Cycle 21… embrace it… and 22, 23, 24 etcetera, etcetera. As long as the treatment continues to hold your PPs at 25 (and hopefully get them down to plateau level) then all well and good.8-)

I appreciate how frustrated you and Steph must feel… how tantalising the nearness to a level that would allow progression to a SCT… but for now you are keeping this bloody awful disease at bay and that is the basic gift of each and every day.:-)

Whatever it takes Andy, whatever it takes.8-)

Dai.

[andygParticipant]

Hi Eve.
Slim is certainly been but through the mill! It's good you look after him so well.
It's a few months since my last MRI scan but I've had lots of X-rays recently due to my back op. I haven't had any unusual aches and pains other than post op ones so a MRI isn't necessary. As soon as I notice a new unexplained pain my consultant will have me MRIed. My PPs were stable round the 19-20 mark but have slowly gone up to rest at 25 for now over the past few months.
Hope you enjoyed your cuppa and the storm left you alone. xx

Hi Maureen.
We're being as busy as we can whilst we can. It can be daunting traveling away but it's got to be done 😉 after the first few trips you get more confident. Start with small short trips and build from there.
I hope everything comes back from the MRI and blood tests all right and you can start planning.
21 cycles equals 84 weeks of chemo Maureen. That's just my latest regime I've been on chemo constantly now for just over 2 years! So I'm not blaming the beer lol. xx

Hi Tom.
You are managing to work which is no mean feat! and your drinking is something I would love to achieve lol.
My back improvement is welcome though I still get aches and pains from it and still can't get far, to the bar and back is ok 😉 but I'm a lot more upright and got some of my lost height back.
I'll carry on carrying on and hopefully with another back op it will be onwards and upwards lol. xx

Hi San.
Thanks for your good wishes they are much appreciated.
We had a great anniversary and it wasn't spoilt even remembering that the words multiple myeloma came into our lives 3 days before we married! xx

Hi Dai,
We love the lakes. We always stay at the same B&B in Bowness-on-Windermere and use it as our base. We have a travel guide of short walks for the less mobile. Ie no stiles, gentle inclines and plenty of resting places. We go midweek out of high season so it's quiet. The roads are passable and more importantly there are seats in the pubs and restaurants.
My post op aches and pains have all gone now. So that's my lower back sorted the surgeon is going to see if there's anything can be done for my upper back next.
My consultant is getting a bit nervous about the slow rise in my PPs but I'm of the mind that as long as the is no new further damage caused I'm fairly happy. 😀
I don't think I'll get to SCT due to too much chemo and radiotherapy. Though I'm not sure if I'd take it now if I was offered. I'm more or less doing what I want to do now. Though that's probably influenced by the fact SCT is very unlikely and if in the real word I was offered SCT I honestly don't know what my reaction would be. Though time away from these wonderful life saving drugs would be a blessing.
As you say Dai we do whatever it takes to get us from one day to the next. xx

Wishing you all well on this varied journey of ours.

Every days a gift.
Try not to waste it.

Andy & Steph xxx

[andygParticipant]

Whoops just got my latest PPs result from last week. They're up to 35 from 25 :-0
Not good but all other bloods were better than usual for me and I'm feeling ok too! Hopefully it's just a blip a big blip but hopefully my next test results will be back down 😉
Fingers crossed that it was caused by a week on antibiotics or caused by the anti fungal drugs I was put on that may have caused my liver problem.

Every day is a gift.
Enjoy it.

Andy xx

[tomParticipant]

Hi Andy
I also hope it's a blip that has caused it, stay strong and fitish and you will soon be on the mend.

Well as for me mine isn't hard physical work am still on light duties as my gaffer said it's like being at home but you don't have to take the dog for a walk.

Stay well my friend

Tom onward and upwards

[mhnevillParticipant]

Hi Andy

So glad you've been able to get these holidays in, and are planning for next year. I know just how much being able to get away means. Two years ago I would never have believed I would get 3 trips to Luxembourg in this year plus a week in the Lakes. We stayed in a Lodge on a farm three miles from Windemere. It had the added advantage of us being able to take our 13 year old yorkie.

Funny things these PP levels aren't they. After all they are only markers and some people seem to be able to live with much higher ones than others. Although my MM seems to affect me mainly via my bones, like you, I am finding that the Zometa seems to be working its magic as I haven't had any breaks even though I am told I am full of lesions. Interestingly, I asked my Consultant last visit whether I should be having annual full skeletal X-rays. He said no, he would ask for X-rays if there seemed to be a problem.

Glad you can keep so positive and encourage others to be positive too.

All blessings to you and Steph.

Mavis

[VickiParticipant]

Firstly Andy,

Can I say you and steph are amazing….coping and doing so much enjoying! Well done you guys. It's so good to hear that you have that positive outlook as it could so easily slip the other way….well done you guys you are a lesson to us all 🙂 🙂

It's a bugger that those pps have gone up a bit…..clearly not enough beer and sunshine, so you must do something about it!!,!

Wishing you and steph all the very best. Also looking forward to the dex rambles as and when they arise!

Onwards and upwards, every days a gift……I really must think of something for myself 🙂

Vicki and Colin xx

[Author]

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