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Date: 15.07.2015
From: lois

Subject: For Colin

Hi Colin firstly how are things?

Just to let you know I have an appointment with the Rhumy Nurse on the 28th August and then back to the Consultant on 8th September.

I am a little apprehensive but here goes.
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Date: 15.07.2015
From: Colin W

Subject: Re: For Colin

hi , jush hope it goes well for you , they cant hid away forever , they have let you down over the years & about time they start giving you some respect

Today just had my forth infusion of rituxamab , earlier had problems moving but they give out a steriod infusion first so can move now ,

also went & seen my mother-in-law , she can drink a little & can move her right leg a bit but still has problems with her right arm & hand , she was having physio when I went in & the OT been phoning today asking about her home , she can say a few works but finds it hard to make you understand what she wants & does a lot of pointing , just think we are a week into this & know its gonna be months & already knackered before its started

any hope those appointments go well & you get some results
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Date: 15.07.2015
From: lois

Subject: Re: For Colin

Hi Colin, sorry to hear you have so much on your plate. Lets hope the infusions work for you.

It is hard when you feel so bad your self and you have to look after someone else. My Mum has just been diagnosed with Dementia and it is getting hard.
It sounds like a long road for mum in law and of course for your self and your wife. Fingers crossed she will improve every day.

I am a little nervous about the out come but I know I have to go with it. I just want to know what is what. Not much to ask.

Take care Colin x
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Date: 16.07.2015
From: lucy

Subject: Re: For Colin

Hi Colin, Sorry to hear about your mother-in-law, I hope she recovers well.

I hope the infusions are helping you. I had mine today, it was a bit quicker this time (under 4 hours) I felt I needed it as that was 9 months since the last one.

Take care and look after yourself too. xx
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Date: 17.07.2015
From: Colin W

Subject: Re: For Colin

thxs guys , the rituxamab is working , my CRP was 78 before I started & now down to low 20s & reduced my steriod by 15mg a day & hoping to drop another 10-15mg over next few months

as for mother-in-law , think we are going to have some fun with her , she tried to get out of bed yesterday even though she is partly paralyzed on her right hand side & throughing a tamtrum , next thing will be her signing herself out of hospital , there is no way we could cope with her at home & she needs to go to rehab , happy days
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Date: 17.07.2015
From: lucy

Subject: Re: For Colin

Glad to hear it's working for you, Colin. It was time you got something that helped after what you have been through.

I hope things work out with you Mum in law, you have to do what's best for you too.

Take care xx
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Date: 17.07.2015
From: lois

Subject: Re: For Colin

Oh dear Colin it is so hard knowing what to do for the best. Your mum in law sounds very feisty. Not good at times. Just laugh about it. Your Mum in law will need rehabilitation.
When my Mum fell and broke her hip they tried to send her home after 5 days I was having none of it. I had only just got over my back surgery and there was no way I could cope. What I am trying to say when she went to rehab they gave her a room of her own with en suite. She had a tv and was allowed visitors all day. She was allowed her own food plenty of flowers to brighten the room. She was there for 6 weeks and was happy enough with the set up.
Maybe you could ask for her own room my Mum said she didn't want to go but she settled very well with her own space.

It is so bloody hard to know what to do. You have to be firm with the hospital and not let them take over because if they had it their way they would just let you deal with it. Of course we like to care for our parents but not putting our selves in danger. We can't lift pull and do all the personal stuff.

I hope Mum settles again. Bless her.
Take care Colin regards to your wife. xx
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Date: 14.08.2015
From: lois

Subject: Re: For Colin

Hi Colin, how are things your way??

The 28th can't come quick enough I am sure I am having an official Flare. My feet ankles wrist and hands are off the scale with pain. My GP is okish with me taking 5 day steroids I hold for my Asthma. I am off on a short break to Sufffolk in a couple of weeks so hope this helps calm it down a bit.

The weather is just typical of our summer.

Take care Colin regards to Mrs Colin.
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Date: 14.08.2015
From: Colin W

Subject: Re: For Colin

hope it all settles , they just given you 5 days worth for asthma , it should help anyway

mother-in-law came home yesterday , way to early but they need beds in the stroke unit , got care package + OT/physo & speech therapist coming in

but she is driving us mad because she cant speak & tell us what she needs or wants & wont take her drugs & wont someone with her all the time ,

I am doing ok myself but still not dropped my steriods off because have needed to be able to move , hope your appointment works out ok , only taken them a couple of decades to work it out !!!
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Date: 14.08.2015
From: lois

Subject: Re: For Colin

Sorry to hear that your mum-in-law is unhappy. She is probably scared deep down. Bless her. Colin I know first hand how hard it is Mum has dementia and is getting worse. Demanding ratty and asking for things to be done now. She is also doing things for attention very child like. It is so irritating and so hard not to get frustrated.
I have to remind myself this is what it is. I get tired with it all and unfortunately because Mum lives with us they haven't put anything in place.
I even have to phone every three months to order a new prescription for her dementia pills.

I could go on and on but I just understand totally the plight you have. Just remember to try and take a bit of free time for you and the wife.

I am glad you are doing ok.

I hold steroids at home with antibiotics just in case of getting chest infections. When I took Mum to gp I just said can I take them he was okish when I said I noticed the supposed OA settled with them.

Keep in touch Colin and let me know when you can how things are.
Take care.
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Date: 20.08.2015
From: Colin W

Subject: Re: For Colin

hi , quick update - things are getting worse if analot of the tything , refusing to take some tablets , crying alot of the time , dont want the BOSS to leave the house or leave her to eat , sleep , rest anything , know she is depressed but has become totaly dependant ,

her speaking is not improving , they got 2 speach specialist to cover cornwall (had more than that in the stroke unit to cover 9 beds) anyway the two are both of sick & one of them got broken foot & returning to work but only outpatient 30 miles away

as for me saterday woke up to pain in leg & think its a ulcer again , took a look & cant see anything , later that day my leg became hot/red & swollon , phoned up 111 service & ring back 5 hours later to find out whats happening , end up seeing a nurse & give antibiotics , & told to see GP next day ,

monday phoned & told to see another nurse , they looked my leg & went to find a doctor & told to put plaster on the 3" blister which had developed over night , by 7 pm this had burst & leaving mess everywhere , dressed it twice & third time in compression bandage , seen nurse at our surgery yesterday & she called in GP , changed antibiotics , leg by now is in some mess , think could be back on my hols
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Date: 20.08.2015
From: lois

Subject: Re: For Colin

Hi Colin, so sorry to hear you are having all this stress.
Your wife must be so tired Colin make sure she takes time out. You should get in touch with Social Services and do some shouting. They will just leave you to deal with everything if they can. They never take into account the carers. It must be difficult for you both and tiring. It is hard when they are our parents but some times we have to put our selves first. It doesn't sound like you are getting all the help you should. I would tell them you can't cope and if they don't help you more you may have to consider a nursing home. I bet they will help then.
Colin at the end of the day if your wife becomes sick or depressed she wont be able to care for her Mum. They can provide a nurse to administer her pills. It is difficult to be firm with your own Mum and why should we. I hate telling my Mum what to do out of respect for her. I am not surprised they are just dumping you with it all. I get the same but for me it is far less stressful. My heart goes out to you both. (((hugs)))

Your leg sounds so painful. The treatment sometimes is beyond belief. I hope the new antibiotics work. Rest those legs if you can.

I bet you must be so fed up and a holiday is what you need.

Take care Colin and the Boss (haha). xx

Keep in touch.
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Date: 20.08.2015
From: Julie

Subject: Re: For Colin

Hi Colin sorry things are hard for you.

Have you tried Carers Support they give you support as you are the carers and they are absolutely marvelous (service I worked in here so I can vouch for them)I am registered with them here in East Yorkshire, and they cant do enough for us, fortunately I do not need them, plus I am bit embarrassed because I know the girls who work there!! Give them a call if you havent already they can help. The website is https://www.cornwall.gov.uk/health-and-social-care/carers/ If they have one near to you they will let you know. At the end of the day you are saving local council thousands of pounds doing the caring yourselves and it isnt fair to leave it up to you and your wife.

I hope you are feeling okay, not been on for a while, mainly because I dont want to temp fate by saying how well I am. My year trial on Toc is nearly finished but my crp is now 0.36 and I have 0 in my joint count, considering I started with joint count of 35 and my crp was 240 I am so pleased but I also feel guilty because others are till suffering.

Hope you get some help soon.
Julie xx

Take care Colin
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