Today was just a horrible day.....

[Help-]

Hi my wonderful rheumies,

What shocking day it was today!! It was just so emotional that I actually have not cried like this for years. I don't know how it is for you guys, but when I have my infusion it is in the chemo ward. So the way I go about is as follows...it's actually the only I can cope with going into the ward. I walk in and say my big hellos to everyone, sit down and wait to be dripped. I don't look left or right, I take something to read and I zone out for 2-3 hours. I know the staff very well... we talk, but I just can't bring myself to befriending anyone else there. Survival Mode. My reason is that I don't want to become attached and the inevitable happens eventually...they are never to return. Two months ago a school friend of mine comes in with her son {the same age as mine} he is having a autoimmune booster, same as a biologic but for cancer. He is only 23.... well he passed away over the weekend. It's the second friend of mine that has been in the same oncology unit where I am that has passed away this year. I wanted to cancel my treatment as I actually couldn't face going in there today. I eventually after much deliberation went....all I did was cry as the sisters and the Dr were talking about Adam today. I actually felt physically sick. I took a picture for a friend of mine to show her the treatment room.....her response was OMW Sim I can't believe how gloomy it is there....another friend of mine never knew I went to the oncology ward. I just wanted to say to them...what do you think that I do every 28 days ….sit on a Chillounge with a cocktail in my hand and chill??? Friends and family actually don't understand the severity of our illness and what we go through physically and emotionally!! One great thing today is that I spread the word to Dr's and the patients about this incredible group......so you see....something good came out from today Sorry for the rant but I had to get it off my chest to people that understand. So thanks to you all for being there in time of need! So much cheaper and better than a phycologist

[allanah]

Awful. I go into rheumatology day unit and have my infusion. They are friendly and full of advice xxxx

[Help- in reply to allanah]

unfortunately my Dr' unit was bought over by a oncologist. So the RA patients are with the Cancer patients. The staff are amazing, I just don't think much thought went into how it would actually affect the RA patients emotionally.

[allanah in reply to Help-]

Dont think I could cope. I have radiotherpay for a RA problem and find it difficult , i feel like a intruder!

[cathie in reply to Help-]

Where are you based?

[SEAgran3 in reply to allanah]

Luckily I too go to rheumatology unit down here in Portsmouth. Superb staff, and happy music

[Hidden]

Heart wrenching..... you rant and cry all you want. As my mother use to say when she was having cancer treatment there’s always someone worse of than you.NHS cuts a lot to answer for

[Help- in reply to Hidden]

Thanks for that at what your mom said is so true. We should count our blessings. I live in South Africa and apparently next year there are going to be major cuts and limits to the biologic treatments. They are capping it R100K per annum. Anything that goes above the patient will be liable for,So my Dr said im blessed that I have been on it for so long as they cant take it away from me, Others will be having difficulty getting them or otherwise they will have to pay themselves, The R100k does not cover me for a year, its approx. 8 months

[Hidden in reply to Help-]

How frightening to think you can’t afford to pay for treatment. My fear is the NHS will go down the private route. I would then be in that position... keep well

[Mmrr in reply to Hidden]

I fear for us all and our NHS if we get a poor result at this election.

[Hidden]

OMG I’m not surprised you were very emotional! I can only imagine how upsetting it was for you especially as it was your friends son.

Here in the UK when having infusions I was put on a Medical Day Ward with other people who are having treatments very similar to myself so we all tend to chat and discuss our various medications and how they are working for us.

Yes your right! this site is excellent for all of us, we all hear and understand what everyone is saying, and we all love a rant now and again. Keep well 🤗X

[Mmrr]

We have a purpose built rheumatology unit with a day ward, I didn't realise how fortunate we are. ( I don't get infusions, but have seen others when I have been in the unit for other thigs).

Best wishes to you.

[SEAgran3 in reply to Mmrr]

Same here

[Help- in reply to Mmrr]

Thank you 💜

[Evaibrahim60]

Yes I understand that we wouldn’t be human enough if we tried to suppress our emotions! I was like you a long time Ago till I lost few people that were big part of my life (adult, youth or children) all with different illness. I convinced myself that’s all part of living we all here for a short time for different purposes and we all leaving. So live or die that’s all in God hand and in most of the times there is no acceptable reason that we could comprehend. All of us should live our life somehow putting the happy masks on and enjoy the trip to the most. I pray that you find comfort and be happy don’t worry. 🌷😘🌷

[Recorder500L]

We should realize how lucky we are in Britain. I don't have an infusion but all Rheumatology is in the same little single story site which is almost in the middle of the car park of the large hospital. Infusions one end and those on biologics and tablets the other, we all share the same waiting room. It is friendly, light with magazines and a hot drinks machine. Lots of disabled parking outside.

Would it help if you could take a friend with you?

I have a ferry journey, we take the car but my husband does not come into see the Consultant, he waits in the waiting room - chatting. He never has done simply because he is too emotionally involved in my RD. I relay all information on the journey home - good and bad.

You are so right, friends and family that are not immediate have no idea. My two children do as they were only 10 and 14 when I was first diagnosed 29 years ago.

Maybe take a different friend or relative with you each time and hopefully they will treat you to a meal afterwards. A big soft hug and Take Care.

[Help- in reply to Recorder500L]

Since I have been ill from my 20's now I'm 51, I feel that I have put my family through enough. I know that if I actually had to verbalize it to them they would be furious. So I'm sure some of my illnesses have come from me internalizing everything. I was the most outgoing vivacious person until RA. The other morning I needed to go too hospital for pain injections at 4am and also I had just had my monthly infusion. He asked what was going on with. He was totally shocked when I told him about my health issues and was actually rather devastated as he had watched his grandmother with this disease. My son is 23 and ever since he was small,no matter how Ill I was I made sure I dropped him at school. I am a single parent (I call my ex husband the sperm donor) . I would be in bed sleeping. Eventually the ins and outs of hospital was a dead give away. He is so sensitive to actually going into a hospital. So ge is a no no. Myfolks are just to me the most incredible parents on this planet. My dad used to take me and like your husband, waited outside for hours for me. He passed away nearly 5 years. After my dad died my mom wanted to come with but I wouldn't let her as I knew the affect it would have on her. Only recently she started coming with to keep me company. On two occasions she heard the children crying uncontrollably. ...that was tickets for her. I ended a relationship awhile ago. It was I must wonderful him coming with me. Never noticed a thing around me. But he was actually a narcissistic who wanted me sick. His form of control. You are a veryblessed lady. It actually made me smile reading your message and seeing how loved you are

[charisma]

I’d not like having to attend Oncology. I did go with a friend who had to get regular bone strengthener there, for Multiple Myeloma.

As I respond, I’m in the Ambulatory Care Unit, getting near the end of my first Truxima (Rituximab biosimilar) infusion. We are each several feet away from others attached to their drips, conversation not really enabled by distance. Young lady nearest me is getting blood.

So far so good for me, very grateful I had no reactions yet!

[Help- in reply to charisma]

Well I hope today you are feeling great and still no reactions. So it seems your treatment room is like mine

[Hidden]

How sad for you. I've had chemo and found it to be a cheerful and uplifting experience. I had many a laugh with other patients and staff. Like Allanah my rheumatology dept has a day case unit for infusions. I have my Osteoporosis infusion in here. So serious and dismal compared to where I had chemo. Although we do get a cuppa and a biccy.