Sorry for this but i need to let off steam!!!
I havent felt good past couple days, i have extensive bone mets but have been feeling very heavy chested, having stitch like feeling in right hand side under my ribcage,plus other things…generally unwell all round, anyway i had appointment at hospital today for mri…looking at mets in pelvis, so i decided to pop in oncology (my onc there today,and i live an hour away from hosp) and see if i could have a word with someone, im not one who usually complains…i just get on with things, but i know myself that i dont feel right!! Anyway i asked at reception, explained how i was feeling…and was told 'clinic full today so no sorry we cant do anything’so in response i said as forcefully as i can…that i really dont feel good and im worried about my symptoms (i have very aggressive cancer) but the receptionist…in a not so nice way said ‘i suggest you go and see your gp and if they feel you need to be seen here then they can contact us’!!! i mean for god sake am i not allowed to see my own oncologist. Left the hospital feeling very low and close to tears, surely they understand how hard it is for us, i feel so let down, my gp only works two afternoons a week so what do i do… just sit and wait feeling very uncomfortable and worried…
sorry for the waffle…just good to get it off my chest!!! i dont post often on here, but read other posts regularily
Oh dear Tracey - that’s not good. I’ve always had such a good response from my oncology ward when I have felt unwell - but I don’t bother with the receptionists - I ring through and speak to one of the specialist nurses.
Why not ring them tomorrow - and refuse to be fobbed off.
Sending you a big hug and hope you feel better soon.
That is really tough, Tracey,
I too live an hour away from the hospital so I know what you mean there.
My oncologist doesn’t follow me up, but said as he discharged me to the surgeon for follow up “If you have a problem, speak directly to the BCNs, it will be quicker than going through your GP”
Your onc may not be the same, but it may be that the onc and BCNs don’t know of your approach. Phone up the BCNs in the morning and try again-unless you feel ill enough to contact the out of hours team.
And have a hug if you would like one
Lavender
xx
First you sounds like you need a very gentle hugs. I not surprise you feel so let down and unimportant. I have been in a similar postition and its isn’t good.
I know alot of us secs don;t have a specialist nurse or any nurse to speak to. Can I suggest you telephone your oncologist secretary tomorrow and ask to speak your oncologist. I’ve dome this before and mine has phoned me back. It just puts your mind at rest. Can I ask when will you be getting the results of your MRI? Hopefully this will speed everything up for you and make you feel like a person again if you know what I mean.
Take care and you have every right to feel peeved; hope you’re feeling better.
Chris x
Thankyou for your replies, I dont have a bcn, i moved just after i finished treatment for my primary bc, had a routine appointment with onc here to register etc, my secondaries were diagnosed a couple of months later, they never gave me a contact at breast clinic…maybe i should ask about that to!!
Will definately phone tomorrow, i was just too exhausted today when i got home.
I did ask about an appointment for my results…and was told we’ll send you appointment once we receive results, so dont know about that yet!!
Thanks again Ladies…sometimes it feels so lonely (im a single mum and dont like to burden my children) its good to be able to ask advice/ questions on here, you’re all so great xx
Make a list of everything that is bothering you and then break it down into things you can ask about when you phone in. You need ask for a BCN to be appointed - they are great when it comes to making appointments for you and also coming out to see you when you are worried and just want to talk through your concerns.
Big hug being sent your way through cyber space ((((((HUG))))))
i’l do that and ask about being appointed a bcn, it is difficult when you dont know who to turn to or contact when feeling bad both physically and mentally, I try to keep strong, and smiling so i dont upset or worry my children but its tough at times, especially at night when i cant sleep.
I am so sorry to hear about the way you were treated by the receptionist - appalling and totally lacking in empathy.
May I suggest that rather contacting your GP who probably won’t be able to help that much that you ring the Oncologist’s secretary and explain your worries and ask to see the Oncologist. Afterall, that is what they are there for! It is very wearing to have to keep fighting to get seen etc but a bit of push usually pays off. Don’t think about making the call just do it - you are 100% worth it. Elinda x
Thankyou for the advice, I phoned my oncologists secretary this morning and explained exactly how i feel about what happened yesterday!! she was very ‘kind’ as you can imagine, she got my onc to call me this afternoon when he got to clinic, so feeling better now that ive talked to him and know that they’re going to do something.
Apparantly my mri (couldnt say exactly as hadnt had full results) showed continued spread in bones, most of pelvis and both femurs had extensive mets, will talk to him about it when he has full picture, he also is going to request a ct scan of neck, chest and abdomen, so i just need to wait to hear from them.
Can i ask if anyone knows… he looked at my bloods, which i had done routinely last week before my pamidronate, and he said they looked ok…so doesnt think theres a problem with my liver!! thats good news i know…very good news!!! would a blood test definately show if i had liver mets??
I’ve just read your thread Tracey and am really shocked at the behaviour of the receptionist to your request. I just hope your onc’s secretary has a word with her. Don’t they realise how vulnerable we are with 2ndaries. It can be such a lonely place at times when we feel ‘not quite right’ and just don’t know who we are supposed to turn to. I’m really glad the onc’s sec was sympathetic and impressed that the onc called you back quickly.
Just a thought - do you have a hospice nearby. My hospital (royal marsden) referred me to a macmillan centre and I find they very helpful. They ring me regularly to see how I am doing and will manage my pain meds and liaise with gp over changed prescriptions etc. They all vary from area to area but well worth having the contact. I also have very extensive bone mets - diagnosed in 2002.
Hi Dawn, thankyou, ive ‘spoken’ to you before on the bone mets thread, im not a regular poster…but read avidly!
I dont think we have a hospice where i live because its just a small town, but i imagine there would be one near my hospital which is an hour away, I think i’l contact my doctors surgery tomorrow and ask about a macmillan contact, it would be good to have someone to help with queries i have and to discuss my pain relief, without feeling like im bothering them!! It is so hard when i dont know where to turn…or who to call.
My bone mets have spread very fast from jan to now… my whole spine is cancerous…no areas of unaffected bone apparantly!! plus its spread throughout my pelvis and femurs, so i know its not slowing down, there are times when my body is in so much pain that to have someone i can contact whenever would be great, so thanks for advice, il be on the phone tomorrow morning.
Thanks also for all other messages of support and advice.
Well done, Tracey, and so glad you got a good response from your oncologist and his secretary. That’s more like it! A CT of chest requested by your onc will be much faster than if done through your GP.
Still a good plan to ask for a BCN though, as there will be days your onc won’t be there and it helps to have someone else who knows you and your medications.
Lavender
xx
Thanks Lavender,
Have called both my gp…for the macmillan contact near me, and the breast care unit, waiting for them to call back. I think ive finally realised i do need that ‘contact’ to help me whether for questions about my pain relief or just for a chat if im feeling down! and dont need to just get on with things on my own…partly denial i think. I never questioned why i wasnt given a BCN when i moved, think i need to be more forceful and ASK!!
I can’t add much really as everyone has already advised you on the best way forward i.e. onc’s secretary, BCN, Macmillan nurse. I’ve found them all invaluable and I never waste my time with receptionists or my GP when I have an urgent problem. My GP is fantastic and we have a monthly chat where I bring him up to date ;o)
I think it’s sad that so many of us have to find the support we need so much rather than just being given the info from the start. Even sadder is that at a time when we have no fight left in us we have to start fighting and arguing!
Anyway, enough rambling, I hope you get lots of support now and symptom control is on its way!
hi lucy … just read your thread… with tears in my eyes…how terrible to be treated like you were at the clinic… sending you a big cuddly hug xx if you dont get any joy from the breast unit, why dont you call mcmillan direct… one of their members will im sure come out to see you at home, they will have all the info on pain relief etc… please dont feel unimportant… you are important… some of these health care assistants who work on the clinics really do need to go on the customer care course … some of them are beyond belief obviously they have not seen your notes or they may have been a little more understanding … rant over … big hugs lucy you very important lady xxxxx angie
Just wanted to say thankyou so much for your replies, it has brought tears to my eyes that you are all so lovely and supportive when i know you have enough of your own problems, but you’re still here to help others, the hugs are just what i need xx
Im kinda getting things sorted slowly! have spoken to gp and trying different pain meds, feeling a little better,have spoken to my local macmillan contact as well so pleased to have her to talk to! I have appointment on thurs to see onc to discuss mri, think he wants me to have radiotherapy to pelvis. And have got appointment for ct scan… 18th oct!! cant believe i have to wait so long when im uncomfortable in my liver area but at least i know it’l be sorted soon. Will mention the wait on thurs when i see onc, the waiting and wondering is just horrible… which i know you all have experienced and understand!
Definitely worth saying “And the scan isn’t until 16th October,that’s 3 weeks the waiting is terrible”
Good that you are getting more support, you deserve it!