First I'd like to thank you all for your Birthday wishes, the cake was lovely but so bit, I gave a big hunk to my daughter for her husband and my son is coming up today for another big hunk, then its all gone.
Yesterday was one year since we went to the consultant about Tom's Ipf, we found her to be so compassionate and lovely and she talked about her new baby and even showed photo's of it in the same outfit as Tom's jumper from Gap.
So we went again yesterday to see her and get any new info she had and to talk about things in general.
Well, it couldn't have been more different, it was as though we were talking with a different person.
She was abrupt to the point of rudeness and had no softness at all.
Every question was treated with disdain, we felt so uncomfortable and couldn't wait to get out.
This time we were offered treatment that would mean a trip up to London to the Brompton Hospital to be assessed for drug treatment, the problem is that these drugs have quite horrible side effects and are not guaranteed to make a difference.
They MAY slow the disease down but there is no guarantee.
The side effects are sickness, diarrhea, loss of weight and not being able to expose you body to the sunlight. I also read from people's experiences that they lost their sense of taste.
On top of not being able to breath properly I know myself that I wouldn't like to have any of these things and Tom is in agreement.
So we have decided to carry on as we are and take things as they come along.
This is our choice.
What was wrong with the consultant I do not know, overwork, baby playing up who knows, but the difference it made to us was profound.
We don't want them to fawn over us but a pleasant manner doesn't cost anything does it?
The cat is being worked on again after getting sort of stuck.
I couldn't think how to do the cheeks and chin and just left it for a while but I think this is working okay.
Once they are completed I'm going to stick little diamontes in the middle of each flower. These are just placed so you can see the effect.
I thought you might be interested in these flowers.
I have cut them from an embroidered table cloth that had seen better days, they could be used as applique.
So sorry to hear about the treatment you received your second time around with this medical consultant.
ReplyDeleteI don't blame either of you for not wanting the suggested drug treatment for Tom. You both are in my prayers. Enjoy each day you are blessed with.
Love, hugs & prayers ~ FlowerLady
I think you have made the right decision about the treatment especially if there is no guarantee it will work.I sometimes think they are just using you to test the drug.Much better to enjoy life as it is now than have horrible side effects.There is no excuse for rudeness from the consultant.
ReplyDeleteLove your embroidery.You are very creative.
You're sweet and facing your trials well. Those flowers are the best I love them hugs from Carollyn 🌹
ReplyDeletegreat idea to cut out the embroidery. I wish mother were alive so I could tell her. she would love that. I am in total agreement with your decision, that is the decision I would make for myself and that bob would make for himself. each person is different for sure... a year ago the baby was newborn, maybe living with a toddler is a lot harder, I like to think maybe she had a bad day at home which caused it to bleed over. we know it should not, but I know mine does. people KNOW when I am upset or unhappy. sorry it happened though, you have enough to deal with, without the healtcare person adding to it.. prayers and hugs..
ReplyDeleteThere are more of those Jekyll and Hyde people out there than we all realise, I think. I'm sorry you had such an unpleasant time. Your embroidery is looking wonderful.
ReplyDeleteBest wishes
Ellie
The cat is looking terrific! I'm sorry the visit to the consultant didn't go more smoothly. Maybe you were seeing evidence of the pressure the NHS is under these days. I keep hearing that they're getting squeezed more and more with staff shortages and lack of funds.
ReplyDeleteHow odd that the consultant was so different this time around. I've known some people like that - you never know what they'll be like from one encounter to the next. I fully agree that it costs nothing to be pleasant and it's especially important when one's work is dealing with people and trying to help them.
ReplyDeleteThe embroidery is looking lovely. The circles at the cat's muzzle look very whiskery, which is just what they should be for that part of his face :) The embroidered flowers are pretty. I look forward to seeing what you eventually do with them.
What a shame the consultant was so different - you're right, there's no need for rudeness. Let's hope this was just an off-day and that her kindness the first time was her usual demeanour. Still no excuse. Your embroidery is lovely, as always, you're so talented Briony.
ReplyDeleteAwwwww Briony, I'm so sorry you & your husband had to deal with that. Ya know, I'm guessing that most likely the consultant was fresh off her maternity leave when you saw her last year. She was rested & enjoyed spending time with her new baby. Then, all of a sudden, her life became hectic and nearly unbearable with her having to go back to work. Oh, if only we could convince people to slow down, "do without", and live more simple lives.... so that their existence could always be peaceful and kind, like their countenance would be. *sigh*
ReplyDeleteAnd I would have chosen EXACTLY what you & Tom have chosen, regarding "treatment". There is such a thing as "quality of life" and abiding by what nature has decided. I am that way too. I will keep you both close in thought & prayer.
Love, Andrea xoxo
I sometimes wonder if such an attitude from the consultant is anger that she cannot suggest anything for this horrible disease. Quality of life should always be considered. My heart goes out to you both but you made the right decision.xxx
ReplyDeleteYour embroidery is coming along beautifully isn't it. I love the thought that the flowers from the tablecloth will get a new lease of life. I would feed back to the hospital the way you were treated. It might make them think twice about how the consultants treat people.
ReplyDeleteI was thinking about that Cherie but I do not want to rock the boat when we may have to see her again.
ReplyDeleteI would hope that she has the courtesy to apologise but I know what you mean.
DeleteWhat a shock! I am so sorry for this. Perhaps she was having a really bad week, it happens to all of us. But she could at least be polite and kind to her patients. I do think you both made the right decision. What good is being in remission if you are way too miserable and sick to enjoy it? The cat is coming along beautifully, and what a clever idea for the beautiful flowers! Know that I am praying for both of you, you are so very sweet, and I wish we lived close to each other.
ReplyDeleteSo sorry to hear about your bad experience with the consultant especially after her being so nice the first time. No matter what her problem was it certainly is no excuse to be rude. I don't blame Tom for not wanting to deal with the side effects of the medications.
ReplyDeleteThe cat embroidery is beautiful. Great idea cutting those flowers out of the tablecloth.
It is always nice to see your needlework. I'm sorry your consultant was rude. Even if overworked or having a bad day, she isn't the one with a life-changing illness. I hope you can enjoy the rest of your week.
ReplyDeleteI know that you and Tom are nice people who show respect to others. The consultant had no right to deal with you in that curt manner. You are not objects or problems, you are two of her fellow human beings and even if she was stressed or tired she should have displayed good manners. She is not your superior.
ReplyDeleteWhat a distressing situation! Illness is hard enough to deal with, without having an unsympathetic person treating you. Those side effects would scare me off of that treatment too, especially if there is a chance that it might not be effective anyway.
ReplyDeleteYour kitty embroidery is looking lovely. Love those flowers.
I have kept a copy of that smiling cat for years now. I think it is so cute! It makes me smile every time I see it.
I'm so sorry to hear you were treated so rudely. Maybe she was tired but in a Doctor, that is really shocking and not on.
ReplyDeleteAm I right that IPF is Idiopathic Pulmonary Fibrosis? My Father in Law had it and he did try the treatment and it did mean he wasn't able to be in the sun and did experience those side-effects that you mentioned. It's a horrid disease and I am so sorry that your husband is suffering from it.
The flowers are lovely as is your kitty embroidery!x
Your embroidery is so beautiful - it's like you're painting with the thread. Regarding your doctor, unfortunately, everyone has bad days, but when you work with others you have to try your best to leave that at the door. Some days you might not be as bright and talkative, but every day you should be polite and respectful.
ReplyDeleteSorry to hear of your challenges, some of those consultants have no idea how their behaviour can upset people, we have had quite a few of those done the line. Your cat is looking very beautiful and I´m sure you will use your flowers in one of your lovely creations xcx
ReplyDeleteHow disconcerting that her manner was so different. Cat is coming along wonderfully. Good rescue of the flowers.
ReplyDeleteI have met one or two NHS consultants who are rude and treat you like dirt . I quite understand that it wouldn't serve any useful purpose to complain or talk back at the time. As you say...might have to see them again! I bet that they don't talk to their private patients that way !
ReplyDeleteWhat an awful experience you had when you saw the consultant, as you already know, it can have a huge negative impact on your experience at a time when you're feeling vulnerable anyway. They sound like pretty bad side effects, it's a case of weighing up whether they'd be worth it or not, which you've already done. The cat is beautiful, you're a fabulous stitcher.
ReplyDeleteSo sorry to hear that the second time consultation was not pleasant . Yes what you have said is true . Sometimes we just have to take things as it goes along. May be some time soon someone will point you to a better option. No matter what, stay positive.
ReplyDeleteYou make beautiful things, and you have beautiful animals. Your blog is peaceful to read. 💗 💕
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