[mhnevillParticipant]

Hi cyber friends

I'm back at last. Thank you all of you wjho have sent me messages and are thinking and praying for me. What difficulty I have had with commuinications. A £92 excess mobile bill in addition to all add-ons I have paid for, and a BT dongle that wouldn't take credits! I felt as if my right arm was cut off.

I am still in Hospital. Will be at least until next Friday. Am into second week of CTD and no dreadful side effects to report – just lots of extreme tiredness. For pain, which is nmow very maneagable, I am on oxycontin 2 x 10mg daily in pill plus top up on request. On Dex days the pain is very well controlled and I am able to get moving a bit on the zimmer, but on the other days I am still struggling with mobility "my bounce" has completely gone!. That's why they uped the dose from 5 mg. It is all a new balancing act to learn.

They are providing me with a "lift" which will bring my pillows up and down, to help me get in and out of bed without putting too much pressure on my arm and shouldr. I will report of its effectiveness once I have used it. It seemed an easier way for us to cope, rather than having a hospital bed, which would have meant us getting rid of the double bed, and no room for two singles. We use the double bed when we have the family visit.

I am also to get a wheel chair. To add to the foldable scooter we have just bought. All this has freeked my husband, Gordon, a bit. He says "what are they not telling us?" I am reassuring him they are just givng us everything we need to cope with bad days as well as good. As I am now to have a permanent catheter I think our lives will be revolutinised once we get use to things. We are having to buy a new shed though, to house everything in. With the wheel chair I shall buy one of those quick releases power packs to make it easier for Gordon to push me about!

They are also going to send OTs out to start discussing getting in and out of the car and will do adaptations necessary. I am so fortuante to have a consultant who sees all these things as important else I don't think they would happen.

As you can see, things are moving forward, if slowly, because i live between two catchment areas!!! However, I think I am in the bast place to slowly get mobile again, so, surprisingly for me, I am taking it all very calmly and resigning myself to be here as long as it takes. I know, once at home, to all intents and purposes you "are on your own!"

Love and Easter greetings to all of you. I will hold you all in my prayers when I go to the Easter Communion in Chapel tomorrow.

Mavis xxxxxx

[BADGERParticipant]

Hello Mavis

so glad things are going in the right direction at least they seem to have got on top of your pain the wheel chair might well be a temporary measure at least I hope so My prayers will be with you this Easter time
A BIG (((HUG)) From Jox

[jmsmythParticipant]

Hi Mavis

I must have missed some of your posts as I did not realise that you were having such a rough time of it. Glad that things are heading the right way. I will keep you in my prayers. Hope you have a great Easter.

Love Jean xx

[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

[tmcParticipant]

Dear Mavis
I am so sorry to hear of all the trials you are going through but glad things are getting slowly sorted out for you and Gordon, I am thinking about you and wishing you well
Love Teresa

[tomParticipant]

Morning Mavis

My we are going through the wars 🙁 but going the correct way 😎

I wont be In Chapel today But I will say a prayer for us [u]all[/u] Today and hope that it helps us all am sure today is the day he will listen 🙂

Tell Gordon that you are correct its a temporary loan you are having with the stuff.

Mavis I was on CDT also as my fisrt line of treatment and that was the reason I had to pack in work due to Tiredness and extreme fatigue:-S

Kepp going the correct way am sure you will do it

Love and (((Hugs))) to you both

Tom "Onwards and Upwards" xxx

Oh and a Happy Easter to you all xxx

[DaiCroParticipant]

Hi Mavis,

As Tom says, you are definitely going through the wars… but if they can sort you out and get you going forward then all well and good. 😎

Keep us posted and chin up.:-)

Dai.

[brochoParticipant]

Dear Mavis I have not been up to speed on here lately as I have been a bit unwell so sorry I havent sent you a message. You have really been through the mill yetr your "smile" shines through still . I am glad you are getting your pain sorted even if the juggling does take a bit of time. It sounds as if the hospital is good at getting you the resources you need and as you say its rare for a consultant to push for you too .Sadly I think you are right that being in hospital is better than being home and forgotten about. Mind you poor Gordon must feel as if everthing is happening in a hurry no wonder he got worried. I hope you get home sooner than you think but more importantly that your pain gets under control then everything will seem a bit better. Happy Easter and lots of love Bridget x

[andygParticipant]

Hi Mavis
Sorry to read about your troubles. Hopefully the medics will get things sorted soon and you will be able to go home.
Love and best wishes
Andy xx

[MariParticipant]

Dear Mavis,

I am sorry to hear you have been have such a bad time lately. I am afraid i have only just seen your post. You sound so positive despite your problems and I am sure your doctors will get things back onto an even keel for you as soon as possible,

Easter has come and gone now but i do hope you had a happy and peaceful time and you are feeling better now,

Love Mari xx

[EvaParticipant]

Dear Mavis,
Thinking of you.
Warmest wishes,
Eva

[mhnevillParticipant]

Hi All

Now settled back at home. Not without its problems but I am getting lots of help, if very fragmented. I am now getting more mobile, if somewhat slowly. The pain is much better with the oxycontin.

I started on my second round of chemo on Wednesday, It would have been Monday if the ambulance had been booked! They have doubled the dose of Thalidomide, which I'm told is normal practice. Not too happy about this, because of the danger of side effects, but suppose need to give it a go.

Am keeping positive and still keeping our holiday cottage booking for August open at the moment.

I find the worst part is life being dominated at the moment by the miriad visits of the professionals of one sort or another. All neededm, but very tiring.

Love to everyone and thank you for all your thoughts and prayers.

Mavis xxxxx

[HelenParticipant]

Hi Mavis
Progress is good… Hope they have got you on your feet again. And as the pain settles you might find it easier to get around.
I found that the dexamethasone worked wonders on the arthritis in my hands and now hope it works on all your painful joints too. The difficulty with mm and arthritis is working out which pain is caused by which condition, I don't envy you.
Hope you don't get side effects and the drugs do their trick
Love Helen

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