Coming towards the end of active treatment

Dear Jacqueline, I am sorry to hear you may be running out of treatment options. I am in a similar position in that when my current palliative therapy stops working it’s likely there will be nothing else on offer. I have been attending my local hospice once a week for the last couple of months and this is helping me make the mental transition that’s needed to accept this new faze of my illness . I don’t consider it giving up but placing a higher value on my quality of life. Of course I have moments of fear but having the right kind of support  from my palliative care doctor and the hospice has kept my anxiety to a minimum. You will find a friendly and supportive group of people in this part of the forum who will listen to your hopes and fears and have lots of helpful advice to offer.

best wishes 

 jane

Dear Jane,

I am sorry to hear you are in a similar situation. It sounds like your hospice is a great support. I get what you mean about placing a higher value on your quality of life, that is a good way of looking at it. Is your palliative care doctor your oncology consultant? I dont have access to my hospice now until treatment has ended I believe. I saw them at diagnosis and went for various things including pain. But that was all stopped and I now have to wait til treatment ends. I may contact them though just to be doubly sure. Thanks for that and for your lovely response. You come across as a very positive person. Take care and stay well.

Kind regards

Jacqueline

Dear Jacqueline, thank you for your kind reply.i have a blood cancer so am under a haematologist, I see the hospitals palliative care doctor as a separate thing, he acts as my advocate in the hospital. The nature of my illness means that although I am still having treatment it is not curative in nature and my prognosis is quite limited. As for access to the hospice, many of the people in the crafting group I attend are still on treatment or part of a trial and some have been attending for over two years, so check with your general practitioner if you can be referred. I have no major physical needs at the moment but go for the emotional support and to make sure I’m on the radar for the future. I have an advanced care plan and have given lasting power of attorney to my husband, this is to try to make sure my wishes are carried out if at all possible. Making these arrangements has been a great stress reducer and allows me to get on with living. Thank you for saying I come over as a positive person because that is my intention. 
best wishes 

jane

Hi sorry to here things are not going well on the Ribociclib I had problems with bloods on the same drug until the dose was reduced and was then fine on it. Unfortunately the funding was pulled a few months ago following a mascectomy (long story).

I am writing this and catching up on the site at this time (1.30am) because I am in hospital following acute radiation burns from RT. I had to be admitted today as things were pretty bad and am having IV fluids and anti biotics. Should get out in a few days. I know no one likes being in hospital but I just can't understand why they insist lights directly above the bed are left on all night. By day 3 I will be a zombie if I last that long. 

I am waiting to see what if anything can be offered once my wounds heal. 

When the funding was first pulled my oncologist was saying there are other options and even suggested a chemo route. But I have never had any success on Chemo meds and my bloods bottom out at the first cycles. I have now been off all meds since late July and he wants to discuss things in Dec. My husband and I are very aware that nothing has been said about his original idea for months and no port has been fitted so we are preparing ourselves for the news that it might be the end of the treatment route. 

I am really annoyed that the funding was pulled as it was keeping things stable and even more annoyed that I was assured it would stay in place when I agreed to the mascectomy and RT both of which have been horrendous. 

I really don't think my body will handle any more chemo and I think the oncologist thinks the same but I suppose they have to offer something. 

I think we will have some decisions to make but for now I just want to get as well as possible and enjoy being with my family and friends. 

So I am wide awake and trying to make sure I get the meds I am in here for. I have had to chase my antibiotics for 2 hrs then they put them up and forgot to turn the drip back on. They finished almost 1 he ago and my fluids need reconnecting so I will buzz again soon. I try not to be a bad patient but surely it is in everyone's best interest of I get sorted and shipped off home asap. 

Try to keep positive even if that is just living the best you can for as long as you can when medicine stops. 

Dear maz, sorry to hear your having such a hard time at the moment, I thought I’d drop you a line to show my support as I’m wide awake as I’ve has a bid dose of dexamethasone this morning. Like you I have a aversion to being in hospital and its not a good environment for decision making . When you get home hopefully you will be able to think through your options on moving forward without the distractions of being on a hospital ward. If I can offer you any help or advice in the future when your situation become clearer don’t hesitate to get in touch I would be more than happy to share my experiences.

best wishes 

jane

Thanks Jane 

I asked for a scan a few weeks ago and had it a week gone Sunday so I am hoping it will be reported next week. That might give me a better idea of just how bad or good things are at present and then we can ask for realistic options with quality attached. 

I had my daughter and family staying last week and on Sunday my husband was driving my son in law and grand daughter back to ours and she broke down sobbing so much that they had to stop the car. She is 8 but has Autism and learning difficulties so she is a lovely but complex little thing. She just kept saying she loved me and didn't want me to die and she hated cancer. My husband found it so emotional he was almost crying also.when she got back she wrote a letter to God asking him to let me stay with her. We have never made a big thing of my cancer around her but she just noticed everything and my mascectomy was of great interest to her. But the boy just one year younger but more academically able seems totally oblivious to it. So strange how children react. 

We have tired to put things in place to help them cope when I go but I hopefully I will have a while before that happens. 

Dear maz, thank you for your reply, I hope the results of your scan provide you with some clarity. It’s the uncertainty I think that makes the mind start racing, as you say when you have some facts you can start making informed decisions. It’s sad to read of your autistic granddaughters distress but the fact that she has picked up on what is going on shows she is very intuitive and in touch with hers and your feelings, which in someways is a gift. I have found a sort of peace with my own situation and with the right support I’m sure that can be the same for you what ever the future brings. 
best wishes 

jane

Your little granddaughter sounds lovely, I'm sad too that you're not feeling so good. I'm hoping for a miracle for you and for you too 

Tvman xx

Hi TV man are you still at your daughter's? 

Thanks for your words of encouragement. Yes she keeps everyone on their toes but is so interesting and special. Not forgetting her brother who is also fab. 

I am unfortunately like a bear with a sore head just now and trying to reign it in so I don't come across as aggressive in any way. 

You along with others are an old hand at this sleep deprivation thing but I find it one of the most difficult things to deal with. I just can't function without sleep. This is my second night in hospital and I am so grateful that I have my own side room with a little bathroom. However the strip light that has no switch and says on all day and all night has brought me to my knees literally. After only fleeting hours of sleep over the last week due to my burns I was flagging. Tuesday night i managed a couple of hours before being admitted. Then Wednesday night zero hours due to the light and nurses hand washing station outside my room with very loud bin and door that had to stay open plus of course obs, dressings etc. Then came last night and I had a plan a desperate one but a plan. I took my 2 blankets, 2 pillows, a wooden chair and drip stand and squeezed them into my toilet area. For 2 hrs I slept but woke up stiff as could be. I have stayed in there the rest of the night as the strip light is giving me a migraine. 

I expect to go home today with oral meds but if not how do people do it? I have tried an eye mask and going under the covers but I cannot sleep with anything over my face at all. I am also worried the nurses may decide to put me on the open ward, as the infection is healing and the last thing I want is a relapse. 

Good morning to you all 

Hi Maz

Back home again, didn't have smooth journey on the way. Flight was late, 1st train late, 2nd train late, car journey to my daughter's took an extra hour because of signalling fault at a level crossing, 2 trains stuck there as well so we had to double back and take a big detour. We found out by chance that she had another miscarriage before this one but didn't tell us, maybe because of my illness. Since I got home last Sunday I have been unwell, maybe due to the travelling. We're going back next February at half term..

That's supposed to be a hospital where you are treated well and come home refreshed and healthy, not like a punishment block with a light burning all night long and a wash station outside. I find that too when I have to go in that there is so much noise from machines bleeping that it's pretty hard to sleep too, with an uncomfortable bed to boot.

Your burns sound horrific Maz, I shiver when I think of them. I hope you get home today, back to your own comfy bed with lots of sleep. 

I've been chatting to you a long time Maz, I'm thinking of you a lot. Take care my friend.