How are you doing today Kip? Hope you’re feeling brighter. I’ve felt lower than I have even at my diagnosis since getting the response to my complaint (which I was asked to make!)… so upsetting as it basically says ‘Tough s***t. Nothing shows up on your mammograms and there’s nothing we could have done about it as you aren’t BRCA so not eligible for additional screening so what are you complaining about? We’ve done all we could.’ Absolutely gutted- also I am portrayed in a very negative light- much of what is written is simply untrue including saying I cancelled the meeting arranged to view the images with the radiographer and surgeon by e-mail to the BCN on the day. Bizarre!! I don’t have her e-mail address and also I said I was unable to attend when the date was suggested in a very out of the blue phone call as I had a previous engagement. . It’s suvh nonsense! They even say I first presented at the unit with issues in my left breast. Errr no- I went with a thickening in my right breast. I didn’t feel antyng amiss in the left for another fortnight. I feel absolutely betrayed. However, once I’ve picked myself up and dusted myself off I will fight this. It is not good enough! My dense tissue was noted in 2009, my family history is extensive. Thankfully, I have always kept good records and I know of the NICE guidelines for MRI scans which say they should be considered iin Jose with significant history even if they are not known to have a gene mutation. Also my surgeon says my cancer was not an ‘interval’ cancer as this only applies when a cancer is found within the three years on the regular screening programme and not The High Risk annual screening. I have since sent the people investigating links to the government guidelines which detail how those on both the regular screening and high risk screening should be given a leaflet on first being diagnosed with a cancer between screening. I’m sorry to go on and on but I think it’s outrageous that I am having to inform them of National guidelines!!! I am hoping to organise a meeting with the investigating team next week. Aagh. As if I haven’t enough to think about and do. Sally did you ever get anywhere with your complaint???
On a totally different topic- my surgery is booked for Jan 14th!!! I will have a double mastectomy and will find out whether this will be TUG or DIEP next Wednesday. I had my CT scan today and was overwhelmed with how lovely the nursery were. I explained I hate cannulas and was told unfortunately the procedure meant the cannula was rather large. Another nurse was brought in purely to reassure me and so I could hold her hand! I felt myself tearing up at their kindness.
Oh CDC I am so sorry you have had such a useless reply to your complaint. Well done for fighting it, like you say you have enough going on so I really admire your determination to be heard by them and not to be brushed off. You are right you are worth more.
How are you feeling Kip? Hopefully a little better, I have only had one counselling session but have been reflecting on it a lot this week and I do feel better so if your hospital offer counselling I would highly recommend it.
Hi Jencat how are you doing? I hope you are well and moving on from the last year. I hope you have a happy christmas and healthy 2019 xx
Cdc ???firstly my lovely for the ???you are feeling with a response like that. Time to get the gloves off, get all your ducks in a row and then leave them no wiggle room when you do fight this, but as a wise man once said to me fight each fight at a time and don’t take on too many fronts ??you will succeed as you strike me as a ???fighter. So pleased to hear you got kind nurses sometimes angels are just there on this journey and you had a couple just when you needed some kindness ??Shi xx
Good luck Jencat with those results today. Hope this gives you the all clear and you can move forward. Its good to hear you are finding counselling and therapies useful. I think we all need something to help us move forward once we are done with active treatment.
Reddi - how are you now, glad you got home!
CDC - well my dear what can I say! How dare they!!! What a nerve! That is so out of order, after everything you have been through, all the information you have gathered and provided them with. Don’t let them wear you down Clare… when you feel good and ready you give them hell. To blatantly get all those details wrong just beggars belief. I really do believe that if, for one minute, they had to walk in our shoes, they would be taking these things much more seriously and understand how we need assurance and good honest guidance in every step we take. To even insinuate that they did all they could and “tough get on with it” is…well… can’t even begin to put that into words that wouldn’t be taken down by this forum!! Big big hugs to you… they better watch coz CDC is coming for them!
But on a better note CDC good to hear you have a date for surgery and are feeling confident with the new team. How are you feeling now chemo is done, are you suffering any aches and pains? I am stiff and achey in every possible joint know to man! From toes to fingers! Can’t work out if its chemo, radio, Tamoxifen, menopause or all of them. Just hope it eventually goes away. Am just trying to focus on getting radiotherapy finished this week and then have a break over christmas to rest up a bit and then see what happens. Don’t even know what happens once I finish rads? Whether I get a scan or something? Anyone have any ideas? I know they said I would get a mammogram on the remaining breast around about the 1yr anniversary of my masectomy so that would be May time.
Hope you had an ok loo trip Reddi and all’s well now.
Cdc, I’m not surprised you’re not satisfied with your complaint response though you should be glad you got one at all so quickly. Mine took 9 months and even then getting an answer, which was no sort of answer, was like pulling teeth. My response was similar to your, in among the blatant lies. It was deemed that the harm caused was ‘moderate’.
Moderate my eye! Having to having 2 surgeries, the second of which may not have been necessary if they’d have got their finger out, and still being on active treatment a year aftr diagnoses and in constant pain and discomfort doesn’t seem moderate to me.
In other news I have rads planning on Tuesday and they have sent me my first appointment for rads. It’s at 4.30 on 7 January. That’s not going to happen. They need to move it because I will not shoehorn myself on to a packed train (and at that time that’s the only ly way to get on at London Bridge ). I’m on reduced hours at work just so I don’t have to put up with that because between my painful feet and surgery damage on one arm and chemo damage on the other, I can’t stand on the rain and have to sit down.
Jencat I hope you got good results today. Sorry to hear you have been struggling emotionally. It is so difficult at times, although pleased you have found some therapies and counselling that has helped. I hope it continues to do so and hopefully good results today will help too.
Kip I’ve got a check up appt 6weeks post starting Tamoxifen with my onc to see how I’m getting on then I think it is a mammogram once a year from date of surgery. Mine is due in August. X
Michelle thanks for the response, funnily enough I saw the radiotherapy nurse yesterday for a catch up and she said I will see them again 4-6 weeks after finishing the rads and then it will be a mammogram and an ultrasound (sounds promising but I’ll wait and see) 1 year after diagnosis (so May) and then regularly check ups after then. I think I am being seen by ONCs to check on progress with Tamoxifen too, so sounds the same as you. It was good to see the nurse because I finally know that I do have Cording!!! All the way from wrist to armpit… .fabulous! She showed me how to massage it gently and I am on the list for an appointment with the Lymphodema clinic so that they can have a go too. So glad to know thats what it is. She was lovely and I told her about the fear after finishing treatment and she said that its so so common but that they have lots of therapies and counselling and exercise classes to help and that I will always have an open door to Radio, Oncology and Breast clinic so I can call at any time for evermore if I need to chat or am just worried about something. She said some ladies just come in when they are feeling fearful just to have their minds eased. I asked about my aches and pains too and she thinks its chemo hangover plus a bit of Tamox thrown in… She said it should ease over time (not sure how much time mind!). She also advised to keep a note of how I feel on the different brands of Tamox as some can make you feel different and you can request the chemist only supply you with the brand you like.
Reddi - I hope you are feeling ok today, sounds nasty and something else you can do without. Take care.
Sally - That is a nightmare time for an appointment for Radio isn’t it… hopefully they can get it changed for you?
Well its the penultimate radiotherapy session today… still doing ok, not sure if I am feeling more tired. I think over this last year I have just got used to feeling tired so its become the norm! Had christmas music playing as they did the rads yesterday… that was a very bizarre thing… not sure entirely appropriate… as the song was “Simply having a wonderful Christmas time” as a machine buzzed over head and routinely fired beams at me! Oh well I had the theme from Titanic playing as I had my initial MRI so can’t expect too much.
Such nice news – especially the sign-off on your CT scan, @Jencat. Woohoo! I can imagine it is almost overwhelming, getting all that good news at once. And @Kip, so glad that you have finally got a name and action plan for your arm pain. Now you can mend it! Hoping the same comes for the other aches – or that they quiet as your body gets used to the tamoxifen.
@cdc Belated grrrrrings over the response to you complaint. I’ll echo @Shi, however: fight the most important battles first. You’ve got a big surgery coming in less than a month, and you’ll want to be rested up beforehand. I’d suggest doing the minimum now to keep your complaint alive – and then, on the other side of surgery, go after them. But that’s just me. You have to do what feels right for you.
My post-op update: it does seem I have a recurrence of the lovely C diff. – that or some low-grade stomach bug. Going in to see the BCNs this morning. Think I’ll have to take a car service to avoid jostling on the bus as well as reduce chances of having diarrhea in transit. At least my fever has broken and I have some appetite again this morning.
@Kip I’d missed that they played the Titanic theme at your first RT. I would have busted up laughing, making it impossible to treat me. My OH and I got hitched at the borough hall and they’d asked us if we wanted any particular music played at the end of the ceremony. We said no, thinking that they’d play some Handel or something. We got Titanic. And this was 2008.
Kip, door hanging is great for cording. I had loads of it after ANC and hanging off the door frame and walking backwards and forwards cleared it over a couple of weeks, especially if you can hang with the bad arm whilst rubbing cream in and massaging with the good one.
Thanks for tips Sally unfortunately im so small i cant reach the door frame!! Hope planning went well. Im now booked in foe the Hope Movjng on Course jn February and also gots lots of information about other therapies available, may have reki and reflexology after xmas. Was quite surprised to be told as a cancer sufferer uou are now classed as disabled! And as such have all the benefit rightsnof a disabled person. A sobering thought. I aas also given an exercise dvd especislly designed for breast cancer patients to help with gettjng movement back and preventing lymphoedema. So a productive afternoon.
Planning was ok. Kept asking if I was comfortable and the answer was no but we could the position that was least uncomfortable. I have a problem laying on my back because I get cramp up my back.
Gave me my list of appointments and all bar about three would leave me having to get on a train at London Bridge in the middle of rush hour and not getting home till between 7.30-8pm. So that’ll be 12 hous out of the house daily because I’ll be working too. I have basically told them it can’t happen and they need to move the appointments so I can be on a train before 5. They’re going to see what they can do and send out more appointments so we’ll see. Start on 7th January. Also got home to an appointment for next mammogram in my remaining breast for the beginning of February after I chased it up a few weeks ago. My last one was October 2017 so if I’m back to annual from every other year then I should have had one in October.
Oh Sally nothing is ever straight forward is it, hope they sort the appointments… 12 hour days is not doable especially as they harp on about the fatigue kicking in! And as for the mammogram… just grrrrrrr
I’ve done it and rung the bell (that’s my lovely children supporting me) did get the doctor to take one with my husband in it and when I got out, it hadn’t worked! Grrr… never mind nothing can dampen my smile today… hope the happiness lasts and I don’t hit a low tomorrow… but for now… smiling!
What a great photo Kip. Shame the one with your OH didn’t work out but this is a super photo and so special. Congratulations on getting through active treatment! Xx
