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hi all, here we go again

11 REPLIES
Member

Re: Newly diagnosed and not impressed!

Hi Lizzie,

 

I was horrified to read your account of events in Oncology.  I did not have chemo, so have no experience of what you have been through, but for sure, you should receive better care than you did. Is there a PALS department that you can contact?  I think you should report all the issues you have had - it is totally unacceptable. What area of the country are you in?

 

Regards -  Sue

Community Champion

Re: hi all, here we go again

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Community Champion
Community Champion

Re: hi all, here we go again

Hi Lizzie, sorry you haven't had a specific response to your post - sounds like your first experience of Oncology was particularly unpleasant .If you post on this thread - you may get some advice from ladies who are a little further on with their treatment .Best wishes .Jill. https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/January-chemo-starters/
Member

Re: hi all, here we go again

Hi Cazzy, sorry to hear you have to go through this for a second time, that really is bad luck. I was diagnosed on Thursday but I don’t know what stage it is as no one really said. I know that I have 2 lumps and it has spread into at least one lymph node. They don’t seem to do a CT or a MRI as a matter of course here so obviously reading that everyone else seems to be having them has made me totally paranoid. I’m back in on Thursday so will ask about that then.
Good for you keeping yourself busy, my dog loves going out but even she is starting to look up at me as if to say ‘really out again?’
I hope your journey runs smooth x
Member

Newly diagnosed and not impressed!

I have been diagnosed with stage 3 invasive ductal cancer (March) and have been through my first FEC-T chemotherapy. I had few side effects and feel lucky in that repect. However, my experiences at oncology have been awful and I've lost faith in the system.

At my first oncology consultation I was physically sick at the environment. Packed waiting room, side room rammed with people having blood tests/chemo - not sure. Then I was asked to step on the scales in front of everyone in the waiting room. I refused.

On meeting the consultant I was basically told I had no choice in any decisions. I could not have a cold cap as they did not have any appointments long enough, I would have to have a PICC line and would have to have the standard steroids. As a Type 1 diabetic, the consequences of steroids needed to be discussed but it was brushed aside. On leaving, I was told to give them a ring if I had any questions. Once I got home, I realised I had no contact numbers of anyone to call!

When I went to have the PICC placement, I told the nurse I was allergic to standard dressings and I had made sure it was on my notes. He assured me the dressings would be allright. On my way home my arm started to blister under the dressings and when I had chemo the next day, the nurse pulled off the blisters with the dressing. She was shocked at the state of my arm. The chemo session itself was absolutely fine and I can't fault the nurse who sat with me throughout.

The following week I went to have the line flushed. The nurse was rough and yanked on the line causing it to bleed and me to cry. Another nurse was offering round sweets and offered one to me. I declined, saying that I am a Type 1 diabetic but she thrust the jar under my nose saying, 'Go on, one won't hurt.' With blood sugars already high with steroids, one would definately hurt! We went to have a coffee before leaving and I could not bend my arm to lift the cup. The dressing was too tight and too low so I had to go back and have it redressed. More pain. I was given two dressings to take back home. The dressing fell of imediately we got home with the weeping blisters underneath so I phoned the emergency number and went to have it changed in the emrgency ward. I was horrified to see a six bed mixed sex ward with one toilet, no washing facilities and beds inches apart. I will never be going there again. I tried to get more dressings but they would only give me one. I've now ordreed some from the chemist at a cost of £50.

I do not have any contact numbers apart from the emergency one and need to check on the medication for boosintg white blood cells as it is sorbitol based so I have been injecting myself with sugar for 7 days! All in all it has been a bit of a nightmare and I don't know what to do or how to contact anyone. Should I have a designated cancer nurse who I can call in difficulty? Please help - I'm dreading my next appointment on Friday?

Member

Re: hi all, here we go again

Thank you for your message its nice to know I am able to connect to others X
Member

Re: hi all, here we go again

thank you for your reply I certainly will keep in touch. X
Member

Re: hi all, here we go again

Hiya Cazzy

 

Am really sorry you back here, after all that time it must be a real shock.

I was found to have DCIS recurrence in same breast after 6 years, it’s wider spread this time and higher grade cells so booked in for mastectomy on 9th April and SNB.

I used these forums a couple of times back in 2011/2012 so very strange to be back here again.

my anxiety levels are creeping up and up as the surgery date gets nearer, think it’s the thought of an anaesthetic rather than the surgery although had x 2 WLEs, I try not to think about it too much.

I had x 2 core biopsies which has indicated DCIS presence ( 37mm , intermediate to high grade ) only but obviously there are no guarantees until after the whole of breast tissue is biopsies after surgery.

I ask for referral to breast clinic after having breast pain ( no lump) which I thought was most likely connected to menopause, got seen within 2 week targets, and in 1.5hrs had seen breast consultant, had mammo, ultrasound, x 2 core biopsies and been told a recurrence very likely, 1week later this was confirmed and I was booked it for surgery 2 weeks after the diagnosis, so it all feels a bit whirlwind but fast is good when waiting for BC answers.

I hope you get your scan date very soon.

Thinking of you

Catherine x

 

 

Community Champion

Re: hi all, here we go again

Welcome to the forum, Cazzy & glad you found us, although you’d rather not be here of course.
Sorry you're back in this place again, but good to hear you’re feeling positive.
There’s loads of support from those of us where you are now, as well as those of us further down the line.
Do look at the ‘going through treatment’ boards when treatment starts, where you will be able to chat & vent to others going through similar.
ann x
Member

Re: hi all, here we go again

Hi Cazzy. Sorry that you are back on the "journey" again. I told my son who is on deployment in the Navy. He didnt say much and now I wish I hadn't with him being so far away. However he said that he would rather be told so catch 22. I had a clear Mammogram 3 years ago and have just been diagnosed with Invasive Lobular. Had all the tests and am back again on the 9th for the plan, surgery date etc. I have found this forum really helpful in terms of support and information. Like you have been keeping busy when not at work. Got loads done. Good luck Cazzy x

Member

hi all, here we go again

Diagnosed last week with stage 3 breast cancer. Waiting now for CT scan to see if it has spread any where else. Then they will decided what comes first chemo or lumpectomy. Keeping fairly positive, having survived breast cancer 12 years ago. Though this one is much larger, but I still cannot feel anything. I'm a larger sized lady. Lump was picked up on a routine mammogram, clear 3 years ago. Told family and friends, after the initial shock all very supportive. So now keeping myself busy , took loads to charity shop yesterday, so home looking very clear and clean at the moment. Dog is getting more exercise too. I have a 22 yr old son, I have told him, not said much to me but he did say that he had been on the internet to check things out. So here the journey begins. Love to connect with others. X