Advanced care

Don't know how two posts went through, strange.

Tvman

Hi tvman, glad to hear you are still stable Mabel, and hoping those blood results keep on the right side of the border for you. I have been quiet in here, just sneaking a peak every now and then as I like to know people are still around and well.

I’m doing really well thank you, (I get embarrassed saying that sometimes) since surgery in March I’m no measurable disease again, for the second time since my incurable diagnosis, still getting Pembrolizumab every 3 weeks to keep it that way til March when touchwood, I should then get to see if my body can hold things back on its own again. 

Hi Kym, I've just been reading your post and the replies. No wonder you were confused! Like KT I assumed you were speaking to the palliative team at home, it was only after I read your second post, I realised you went to the hospice for your appointment! Yes, I think you did answer their question but maybe they just wanted you to think about in in the meantime and possibly discuss it when you were on your own! I don't know, sounds like they were confused too!! When the pailitive nurse came to see me, it was at my home and really all she did was tell me to think about what I would like to do and what my wishes were when the time came. She also said that I maybe felt that it was too soon to have that discussion as I didn't feel as if I were at deaths door. Then she said that they like to get on record what my wishes were, while I am well enough to think about it and discuss it clearly with them, which made perfect sense. My second appointment was at the hospice and I was asked to go alone for the first 30 minutes or so and then if any (or all) of my family wanted to join us after that, it would be fine!  My local Marie Curie hospice is one of the ones KT was referring to that has a day unit and I have gone to quite a few weekly classes there. I've also had acupuncture, chiropody and reflexology. The Occupation Therapist also arranged for a stair lift and a few other bits and pieces for around the house!

I have been very lucky as the trial drug I took for over three years, worked its magic and even although I stopped taking it in Sept16, due to the side effects when the cancer was stable, my next scan results in Mar17 reported no evidence of disease and it has remained like that since! My next scans are due at the end of August! You can read this on my profile page. So don't think because you are making these decisions now, your time is almost up!! It's good to hear you are on chemo, as that could give you extra time which is all we would all like! I wouldn't worry about your son wanting to ask even some awkward questions or as you say straight to the point ones. The staff are used to speaking to families and understand how hard it is for them! Our son looked up my diagnosis on Google and came armed with so many questions, I felt like it was the Spanish Inquisition but the Palliative team just took it in their stride and worked through them all very patiently, so don't worry! I wonder if your hospice is like mine and has a day unit! If so please use it, you will definitely Benifit from it and they will also give you a tour of the building if you say that's what you want! Good luck! When is your next appointment?

KT! Great to see you post again in the Incoragables group!! So pleased you are still doing fine. I know you probably feel strange about posting etc when you are doing so well, I am too apart from a few curveballs that have come my way recently. However when we first joined, wasn't it nice to hear the success stories and that there could be a light at the end of the tunnel? I do think especially people new to the group need us "old hands" to give them the Benifit of our experience and let them know it's not all doom and gloom! Stay well!

Hi Annette

Thank you so much for your reply .yes my local hospice has a day centre I go there for physiotherapy  . The day centre activity has not been offered 2 me tbh not sure if I would want 2 go atm . The new cancer appeared on my shoulder as a small bump n bruise I thought I pulled a muscle at 1st that was in September 2018 after few weeks it disappeared then it came back at xmas 2018 I wasnt 2 concerned by February I was in quite a bit of pain n started taking pain killer 1 day at work I couldn't bring in a delivery (I work in retail) I spoke 2 my manager i was feeling really bad as i was in that day as overtime she said 2 go 2 my gp n get a lite duty note this is where everything went downhill . 1st my gp told me i was no longer registered there they said i would have received a letter as my last visit was in 2015 n the letter would have ask me if i still was in area n still wanted 2 b registered with gp i was a bit taken back n my 1st thoughts were omg what about my children r they still registered n they were could understand it 1 little bit as they done go 2 the surgery I cant even remember when I last took my son n he is now 23 my youngest is 15 n I've not taken her for years receptionist said she will book me in as a new patient so 1st appointment was 3weeks with the nurse I saw nurse n she told me I need a dr appointment 4 my arm thank God as by now my arm hurt so much n even worst when I walked 2weeks later finally saw gp she sent me to A&E spent 10hour there 2 b sent home n told I've been referred back to breast clinic still in pain when back 2 gp .my gp referred me on a 2week referral gp put me on morphine patches n zapain. N gave me a month sick note .at the breast clinic they couldn't find my records n tbh if they couldn't c I had a reconstruction I dont think they would had believe I was treated 4 breast cancer back in 2004 as will know what was to follow 1st ct scan  2nd visit a MRI (each appointment was about 3week apart ) it seem like I was being sent 4 a scan at each appointment by now my arm was causing me to break down in tears the pain was unbearable 3am every morning I was up in pain back at hospital consultant tells me scan has showed a large cyst on my kidney so he wanted a pet scan tbh all I wanted was my pain sorted so I ask what about my arm I really can't take it any more oh yes he said we will do a biopsy next visit was told lump on shoulder showed secondary breast cancer. Now wait to c the oncologist . At home 1 evening my shoulder feel wet looked in mirror there was blood everywhere in a panic I called the nurse from breast clinic as it stopped bleeding she keep a eye on it if it starts to bleed again go A&E in the morning I had a hole in my shoulder (very hard to describe but looked like I had been shot) saw oncologist n she referred me 2 palliative care with the words dont worry it just 4 pain control waiting to start my chemotherapy 1 afternoon I fell asleep on the sofa woke up n couldn't move my arm ended up in A&E n was keeped in overnight but good news they sorted my pain now on gabapentin 300mg x 3 day plus fentanyl 50mg patch n oxycodone 10mg 1.5 when needed now I'm not in pain n do sleep all night I had 2 lots of chemo saw oncologist after 2nd 1 n she looked me in my eyes n said u know we cant cure this it is incurable I ask controllable she said I'm trying that was 3weeks ago was told if not smaller chemo will stop n will try radiotherapy if that dont work we will try hormone therapy then there is nothing we can offer u . Will find out on Thursday if chemo will continue or stop . Sorry 4 long post but I read back on my own messages I've not once explained from the the start .

Kym 

Sorry forgot to put in last message...Oncologist made another referral for  palliative care this time for palliative care my son thinks when she came to visit me at home I looked so Ill due to the pain I was in she may have thought I was ready for the hospice he said that is the only explanation he can think of after the appointment at the hospice as she made so many things happen so quickly Macmillan nurses came to my home was signed up 2 a 1st response and   1call out.she got social services 2 come home 2 me they helped with sorting out my tenancy getting signed over 2 my son n pointed me in the right direction  making him legal guardian for my daughter . She also got me a benefit called pip and helped sort out universal credit ready for when I start getting ssp from work (I'm still receiving full sick pay ) also transport 2 n from hospital for chemo. (Which I'm very grateful as I wouldn't have known where to begin n the extra money has been a God send ) this all happened in 1week 

Dont think I've forgotten anything 

Kym xx

Hi Kym, Thanks for explaining! You should copy and paste that post into your profile page as it doesn't really tell the story! My you've been in the thick of it. It's bad enough being in pain but for your GP to say you are not registered there and then find out that the breast clinic don't have up to date records for you, must have seemed like a nightmare! I'm pleased you managed to get the pain under control, it makes such a difference when you can have a nights sleep without it being interrupted by pain!  When I saw the palliative care nurse at first, I did tell her I didn't think I was at the stage of going to the hospice on a regular basis and it took me 5 or 6 months before I made enquiries about the Day Unit, so I understand what you mean! My post had been long enough, so I skipped bits!! Yes the McMillan nurses are terrific at organising things for you. Things we don't know about like PIP and once you get it, it can take off the pressure financially. You mentioned they also arranged for your home to be transferred into your son's name etc I wonder if anyone mentioned to you about Power Of Attorney to be given to your son over your medical care? If not it's worth while asking McMillan nurse to explain this to you. It was one of the first things I did after diagnosis. My husband and I had already made a Will but not POA. I know there is so much to try to take in, but once your treatment is sorted, these other things bring you peace of mind as you know even if you are very unwell, someone you love is in charge of your care, to carry out your wishes!

I'm afraid it can be a bit of a rollercoaster at times but things will slow down soon enough if you just hang in there and give it time! The thing to remember is that The people here in this group, were also told they had incurable cancer and some of us have been around for quite a few years after that diagnosis! Good luck on Thursday. Take a pen and paper with all your questions for the rest N colonist written on it, then you won't forget to ask! 

Hi Annette 

Thank u I copied n pasted on to my profile thank u I will write down my question today I will admit when I was told my brain went into overdrive but after a week or so I did think 2 myself I'm not ready 2 go anywhere just yet n I stopped laying on the sofa push myself to carry on with every day tast I'm am restricted in what I can do due to not able 2 move my left arm but not givin up I do what I can n ask my children 4 help in things I cant do .thank u so much 4 your advice u have been very helpful will post tomorrow outcome of consultant appointment 

Kym

Hi Kym, I hope you get answers to all your questions today, it's worth jotting the reply next to the question because it's hard sometimes to take all the information in when you are seeing the consultant or oncologist! I'm glad you thought I had helped!

You will be in my thoughts and prayers for today, I hope you have a good consultation! Good luck! I will look out for your post!

Hi Annette

Thank you 

That's a good ideal I must look really stupid I've 2 admit since being told I cant think even the most simple things all I seem to think of is death I put TV on to take my mind of things n all I c is funeral adverts walk 4 life or walk in memory  I put a film channel on n someone dies I know I'm not the only person just been told my cancer can not be fixed n so many people on this site who r managing so well getting on with their life I'm hoping to get answers today n I decided stop feeling sorry for myself be as strong  all of u r  

I will post later after my appointment 

Thank u Annette 

Kym x