[bandityogaParticipant]

It's Ian's birthday tomorrow and we found out today that he has MRSA in his bed wound. He is not on antibiotics as it is confined to this area and he has not temperature. I am afraid he will contact sepsis but nurse assures me he will be well looked after and ops taken twice a day. They have also taken his blood to test for infection and if it is in his blood then he will be give antibiotics. He doesn't seem to be getting much luck.

I have baked a cake and hopefully we will have a nice day. Ian seems to be moaning at me all the time and I am snapping.

I have been helping him do some physio when he isn't too tired and he is getting stronger. Hope this goes away soon.

Maureen

[EvaParticipant]

Dera Maureen,
I'm so sorry about what you are both going through. It must be such a challenge to figure out what Ian might actually want for his birthday given his constraints. Perhaps for the MRSA to go away…..
I'm so glad Ian appears to be getting thoughtful care.
Can Ian play movies on a laptop or read stuff he likes? Music? Is he a gamer?
I hope you can get some time off occasionally even though that's probably the last thing on your mind. Can anyone else visit Ian, even with you? I don't an too sound heartless, but you are going to need some time off, when you can really let go for a few hours. The circumstances of your situation pre-diagnosis was really unusual, and I feel you could be forgiven for wanting to see a trauma counsellor and talking things through anf perhaps getting ideas how to mange the situation. I'm not saying that a 'normal'counsellor can't understnad, but you have both experienced multiple traumas and there are people who are trained to advise on such things.
Very best,
Eva

[eveParticipant]

Hi Maureen

Well what can one say,it's one thing after another ,this is we're the family have to help out,even if it is just for an hour to give you a break.

In Ian,s defence he most properly does not realise how everything. Is taking its toll on you,but it does not mean you have to sit back and take it. You do have to find you own way of dealing with this,because you go through all the symptoms from guilt and feeling you just are not doing enough,you have to toughen up and say to you self I am doing my best.if you carry on you will not have enough energy for when he comes home.

Start learning to take short cuts instead of baking a cake buy one,get help at home if you can get a cleaner in ,less time keeping house straight,anything that gives you time to relax away from work,hospital,if you have a good friend who you can turn to,not to talk about your problems not all the time,but someone who understands the problem it helps.

Hand on my heart I can honestly say,I the end you just want to step out of this Myeloma. Bubble it is such a cruel and gruelling illness,so you have to learn to step back,accept you can only do your best. Eve

[tomParticipant]

Hi Maureen and Ian

Am not shocked nor surprised by the way you both feel, as its been said many a many a time its hard bloomin work and i think its harder to be the "Carer" than the patient.

I hope you all have a great Birthday,we all know its not going to be a great big lets get this party started day, so a little bit less is more (as the saying goes) sit next to each other and cuddle and talk about the times pre MM and plan for what you will do when Ian is better.
Its normal to moan and its normal to snap, just bear in mind none of you asked for this damn MM.

You both stay strong and Am sending you both My Cyber Hugs (((((HUGS)))

Love to you both Tom Onwards and Upwards xxx

Happy Birthday Ian x

[bandityogaParticipant]

Hi Eva

Ian's birthday went as well as can be expected. I baked him a cake and bought him the series of the wire on dvd. He also got nice face creams and lots of cards.

We had good news that his light chains are now down to 147 and paraprotiens are now 5 but his myeloma his mostly light chains.

He used to like playing games but has lost interest and also the hospital has no wifi but he can get 3g on his samsung tablet.

I got a letter to attend a stress class in June. i declined and went back to doctor but he says it will take months to get a one to one councellor. I will ask to be referred to ian's councellor and hopefully that won't be too long. I get so tired sometimes and feel I am going to crack up.

Hope you are keeping well.

Maureen

[bandityogaParticipant]

Hi Tom

Ian had as good a birthday as possible. I baked him a cake and bought him the series of the wire. He got nice face creams and lots of cards, including one from his work. His nickname was soapy as in oor wullie as he had curly hair and they designed a card with his name and a monkey on the front. He did laugh.

Thanks for your advice.

Maureen

[bandityogaParticipant]

Hi Eva

Ian's mum and dad who are in their 80's visit twice a week in the afternoon and some of his workmates usually go in once a week. It gives me a break from afternoon vists and I have more energy to visit at night. My sisters ar eno help. One hasn't spoken to me in 8 years and the other only sends text messages. I have good friends who support me.

I probably do too much housework and should relax more.

Maureen x

[eveParticipant]

Hi Maureen

Take everything they offer you it will help in the long run,I look back at the first time and thin how an earth did I do it,things also had to be changed at home,a shower instead of a bath,wooden floors in stead of carpet,the list went on and on,and some how I managed it.

This time I will not have all those problems but I am dreading the next round of chemo,all those hospital visits waiting hours in corridor s waiting for drugs makes me very angry .so I am dreading how I will cope.Slims bone marrow has gone up to 10percent,so waiting on test results. We thought we might get 2years free of this myeloma,but Slim is one of the unlucky ones.
You might think I am hard with some of my reply,s but you have to look after yourself,if you become ill who is going to look after Ian.take what ever they offer you,by the time all this is finished you will need all the help you can.Eve

[bandityogaParticipant]

Hi Eva

Sorry to hear that Slim's myeloma has returned. I hope they will find a cure for it soon as lots of research is being done.

I will have to cut down on my visits to the hospital to once a day on some of the days as it is very exhausting but Ian doesn't understand.

I'll say a prayer for Slim

Maureen x

[HelenParticipant]

Dear Eve
I'm just back from the sunshine to the current snow! and in catching up on the various post I am saddened to hear of Slim's 10% rise. When are you back at the clinic to find out what happens next? I always feel so close to you as our diagnosis days were so close together. I go for bmb after Easter. It is all so disappointing really.
Love Helen

[Author]

Posts