Bit shell shocked !!

[5lupins]

it is thirteen years since I was diagnosed with gca. , and to be truthful I have never felt well but have been ok. I still take low dose pred. And methotrexate. I haven’t seen rheumi for two years due to covid etc. so, a few months ago decided after five bad years to get a grip. Went to Docs and had cyst on arm which I have had six years checked etc. ultrasound in six weeks, followed by visit to breast cancer consultant and mammogram. Felt it was a cyst but needed mri….. Phone call from gp that I needed an urgent appointment to sarcoma clinic. Few days later Sarcoma consultant says MDT think it a nerve sheaf tumour non malignant. Pheww.. I go for further mri in a month. I could have surgery as it is painful at times but it is the same side as breast cancer and don’t want to risk lymphoedema or possible nerve damage. So all good. 😊

I have also during this time booked a rheumi appointment for last Wednesday. Lovely young doctor who listened whilst I told her how I was struggling with pain and fatigue. After forty minutes she wanted bloods and chest X-ray that day and would see me in three months. Best rheumi visit ever.

I went home exhausted after three hours but relieved I was back under some one’s care. One hour later consultant rings to say bloods are all high and she had booked me a PET scan . Yesterday I got a call to tell me that the scan was Saturday at 8.30. Yes tomorrow. I think it is probably the GCA that has crept up on me over the last few months. Silly old woman or what !!!

Yes the NHS is struggling but I have been seen by three consultants and four scans. All of which I was dealt with professionally and kindness.

Thanks for listening Take care .J

[Bluey-1]

Pleased you’re being seen promptly. I too can’t complain. I have been well supported by my GP practice and rheumatology department. I really feel for those working in the NHS. They are overworked and short staffed. My husband has had excellent service from the eye clinic for macular degeneration but has noted several people have returned to their home country since Brexit. His appointments are getting further apart.

[5lupins in reply to Bluey-1]

Glad he is in good hands .Eyes are so important.

[Bluey-1 in reply to 5lupins]

Good luck with the scan. Keep us posted

[DorsetLady PMRGCAuk volunteer]

Sorry to hear GCA still seems to active -but good news on cyst and treatment you received for both.

Do let us know how you get on tomorrow please -and good luck

[5lupins in reply to DorsetLady]

Thank you I will let you know. Guess it will be a couple of weeks.

[PMRpro Ambassador]

That's all a bit rubbish - what a shame after all this time. ALl the best for tomorrow.

Many hospitals are running scans.screening clinics at the weekends to reduce the waiting times. My nurse daughter works in an NHS endoscopy clinic 4 days Mon-Fri and then puts in 1 or 2 days in extra clinics run by private suppliers at the weekend.

[5lupins in reply to PMRpro]

Thank your daughters for the care they and others give to us all. Nothing like a caring nurse or Doc.

[PMRpro Ambassador in reply to 5lupins]

Thanks on their behalf - gratitude goes a long way!

[5lupins in reply to PMRpro]

when I had seen the rheumi and waiting for my bloods, the nurse who had weighed me etc, earlier said “ Oh are you still here waiting for your bloods”. “Yes” I replied “ or for a bus, whichever arrives first”. We both ended up laughing and she put her arm around me. It made a tiring wait good.

[123-go in reply to 5lupins]

I’m sure your humour lightened her day, too. 😃

[123-go in reply to PMRpro]

…and costs nothing-only a moment in time to let someone know they are appreciated. When I’ve thanked someone at my hospital the reply is often, “It’s my job.” It is more than that and involves kindness, compassion and skill.

[SheffieldJane]

Wishing you all the best for tomorrow. You seem to be in excellent hands. Keep us posted. 🍀

[5lupins in reply to SheffieldJane]

Thanks, I am at Northern general tomorrow and Hallamshire for Sarcoma, as well as my local hospital. All have been excellent. 🌸

[SheffieldJane in reply to 5lupins]

Those are my local hospitals and my experience has been positive. I will blow you a kiss. X

[5lupins in reply to SheffieldJane]

with a name like you use I did wonder. Hope you are feeling better. J

[Rache]

Glad you’re receiving excellent care. You’re not a silly old woman - you sound very together and capable! Wishing you all the best for tomorrow. Please keep us posted x

[5lupins in reply to Rache]

Thankyou Rache. I have struggled on my own but just keep going I have even joined a book club which is quite small but nice. I am almost profoundly deaf so larger groups are tiring.

Going to look round my garden and pick a few flowers. 🌸

[Karenjaninaz in reply to 5lupins]

Would a cochlear implant help you? For hearing? It’s life changing even for deafness in elderly.

[5lupins in reply to Karenjaninaz]

I have looked into it, so thanks. My niece who has been deaf after having measles had one. I have however enough hearing that strong aids help me. The worst time is when I go to bed or have ear infections. Just sorting a fire alarm for under pillow. I don’t feel I have the energy at the moment. Maybe when I am eighty. 😉 🌸

[Grammy80]

You certainly have a plate full! I wish you all the best tomorrow.💞

[5lupins]

Thanks. I’ve just got a letter from consultant and the urgent scan is for vasculitis. Better the devil I know after recent scare. Also true iron deficiency. Onwards we all go .🌸

[Healthworrier]

Glad to hear you are being well served by our much maligned nhs. Must say that my nintyfour year old dad has had exemplary care from the nhs. Wishing you all the very best.

[5lupins in reply to Healthworrier]

That is good to hear. The very old need good care.

[Phoebess]

What an emotional rollercoaster to be on. Hope you have an uneventful day today. Sounds like your consultant is on the ball and you'll soon be sorted.

[5lupins in reply to Phoebess]

Feet not touched ground the last few weeks. Hoping for the best. 🌸

[Miacaro45]

Wishing you well.

[5lupins in reply to Miacaro45]

Thank you.

[Stills]

very pleased to hear about such excellent care, enjoy the 💐

[5lupins in reply to Stills]

It helps. Thanks for the flowers. 🤗

[Macas]

wishing you well and so pleased you are getting such good care 🌹

[5lupins in reply to Macas]

Thank you so much.🌸

[marantha]

I too am under NGH and RHH and agree about the excellent care. Think I’ve been to most “ologys” and always felt looked after. Keep it up Sheffield and thank you.

[5lupins in reply to marantha]

I live further away now but get to use the special facilities when needed. 🌸

[Telian]

Bit of a roller coaster and good to hear you’re receiving good care You do seem to be coping well in all of it. Hope the scan went okay this morning. 🌺

[5lupins in reply to Telian]

Thank you Telian. All went well, so going to have a nap after my third cup of tea. 🌸

[Telian in reply to 5lupins]

We’ll deserved too! 🌺

[Tiggy70]

Hope the scan went well this morning. It’s good to hear that you are having proper care and in a timely manner. I think the NHS are doing brilliant work under such difficult circumstances. 🌸

[5lupins in reply to Tiggy70]

We all need them that is for sure.🌸

[Frewen1]

so glad to hear everything being monitored now… yes, I was thinking yesterday as I was having a new prism stuck in my specs, how very lucky I am at my hospital. I’m sure some is postcode luck, but despite so many years of being run down the NHS is still a wonderful resource. Good luck

[5lupins in reply to Frewen1]

Maybe I should join the post code lottery ……. or not. 😉

[Missus835]

Hope this morning's scans went well. I'm so glad you're under care again. Keep us updated with results. Cheers!

[5lupins]

Thankyou, back home drinking tea. So all is well. 🌸

[lkcreedon]

A lot going on for you. Best if luck 💕

[Grammy80]

I've been thinking about you and wondered how you made out? and how you are doing?💞

[5lupins]

Thank you Grammy , I am very stiff and tired but fine. Family came and brought sons birthday tea with them. So nice to have company. , My American daughter in law came and was saying how pleased she has been with the care for recently diagnosed MS she has received. I told her that there are many Americans on the forum and she was quite surprised.

I was told by PET scan staff that consultant will have results in a few day, so not long to wait. I really should have realised earlier but have often had days when I have felt very unwell so …….. Glad you are improving and have a good person to help you. Take care J