Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Advanced care

Kym66
Posted by

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 

Kym xx 

Kym66
Posted by

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

Kym xx 

anndanv
Posted by

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! 

Love Annette x

Kym66
Posted by

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

Kym xx 

anndanv
Posted by

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!

Love Annette x

Kym66
Posted by

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

Kym xx 

Kym66
Posted by

Hi Annette

Appointment went well a lot better than I expected 

Going to continual with chemo oncologist was very happy with my open wound she said it looks a lot better she was worried about the bit inside being black she was thinking I would have got a infection  (sepsis ) n I would not b strong enough to fight it she said going 2 increase to 6 chemo next week will b my 3rd what worried her was I mite not b able to have radiotherapy as very close 2 where i had it b4 she is going to do a scan after my 4 chemo then put me on hormone therapy  . Other questions i ask she said couldn't give me a honest answers but i should keep in mind there r lots of new treatments that come out 4 secondary breast cancer but going to do her best 2 keep me alive 4 many years to come it all boils down how the cancer responses to the chemo 

Kym 

I feel like a big weigh has been lifted I know they cant say your cancer has gone but my out look looks good I think as long as I stay as positive as everyone on this site I stand a good chance 4 a good few years to come 

xxx

Kym xx 

anndanv
Posted by

Hi KYM, I'm so pleased you had a good consultation, it makes such a difference when you know the oncologist is listening to you and answering your questions as best they can! My oncologist also spoke of the new treatments coming out all the time and that she was going to try her best for me! What more can you ask! Where there's Life, there's Hope!

Now when you said about thinking about death and funerals after diagnosis, that's normal human nature! I remember my daughter saying to me when she was pregnant that until she was pregnant herself, she hadn't noticed just how many pregnant women there were around or how many women were pushing prams! When we have something on our mind we notice everything about it more!

Now, you said about me and others here being strong! In fact I don't feel strong but just try to have a positive attitude. I've always been a cup half full person and that hasn't changed. I do think it is just that some of us here have had our diagnosis a lot longer than others, so we have come to accept it and realise we can't do the things we used to without help! I'm glad you feel you can ask now, the next thing is not to feel quilty about it, that takes a bit more effort but I'm sure you are already on your way! Good luck with the chemo, remember to rest when you need to! 

Love Annette x

Kym66
Posted by

Hi Annette

Thank you so much 4 your words of encouragement   I wanted to share with you my son came home with a present 4 me he said it was to keep me busy during the day 

I called him banjo a 10 week old cocker spaniel  

Kym x

Kym xx 

fighting girl
Posted by

Welcome banjo 

my dog keeps me active ,I have big family but the dog is an adored member of my family too

enjoy banjo

xxxxxx

Kym66
Posted by

Thank you 

Xxx 

Kym

Kym xx 

tvman
Posted by

Yes Kym

Things that you used to gloss over, now stand out like a sore thumb! Having an incurable diagnosis just turns your life upside down and you can't think straight. As Annette says, some people in this group are still alive after many years. I was diagnosed around the same time as Annette, March 2015, and I thought I wouldn't see my 60th Birthday and I wouldn't see my grandson growing up. I was very upset and had to have counselling. I am now 61, my grandson is 3, and I am making plans for at least the next 2 years! 

Keep strong Kym

Tvman xx

My philosophy is simple, love life and family.
Kym66
Posted by

Hi tvman

Thank you  I can only hope I get to enjoy my grandson growning up 4 a few more years I'm pleased you have seen your grandson grow n continue to enjoy start of school I can tell u it amazing when you stand in the playground n hear NANA but in your cass grandad or what he calls u . It is all so hard time when u dont see as much of him due to school but wait till the pictures start coming your way its truly amazing. 

Thank you again tvman I will and have been very strong today n feel alot more happiness within myself 

Kym xx

Kym xx 

Daisy ok
Posted by

Hi kym66,

wow yes you’ve been the mill, I am glad you can carry on with chemo and fingers crossed that goes well. It’s a mind field with all these new drugs coming out but good. I love your pic of your new pup enjoy your cuddles.

best wishes

live, love, laugh 
Kym66
Posted by

Thank you daisy

xxx

Kym xx