Scared ...

Dear Tessa

I think we all have these times. It's difficult when you live alone. Can you do something to occupy your mind for a little while? I know it's difficult. Do a crossword, read for a short time? You must be so tired with your head buzzing. Perhaps listen to some music? 

Take care, we are all here to help

X

hi my heart goes out to you.  I think that you should call palliative care again.  They should be helping you more.  

Its not the same but I had pain before Xmas and I was really really panicking inside and very upset because it felt like the end...I mentioned it to the hospice counsellor and she said I had to speak to my palliative care nurse immediately, which I did and she came out the next day and sorted things out.  I know it is not the same as your situation and they can’t make decisions for you but they should help you make sense of things and help you feel less alone. Sometimes we don’t want to make a fuss....but you should not be “in the system” you should be being helped now.  I’m hoping you can contact them direct but I can also access them through my gp (know things are different depending on where you are).

The outcome may be the same, and you may go into the hospice but at least you will be supported in your decision making.

I don’t know if my post will help, as maybug said in another post, sometimes when you have cancer everyone tells you what to do,  but hopefully you do have palliative care support out there, you might just need to give them a push (if you don’t tell them you are not well, then they don’t know the urgency, if that makes sense).

thinking of you lots, Heather xxx

Hi Tessa,

Nothing particularly extra to add to what Roobarb said, but just wanted to acknowledge how hard it must be to be in the place you are in at the moment. Being alone and scared is normal in the circumstances in which you find yourself. I hope your friend brings some comfort, and that others answer your call for support. Sometimes I think we forget it is okay to ask directly for support and it is needed as others are not mindreaders. People often don't know how to offer support, but a direct request for company might help.

Lots of thoughts going your way.

xx

Dear, tessa, as a fellow blood cancer patient, I understand your dilemma, so I’m going to speak frankly as I think you deserve it. If you decide to continue with supportive treatment of platelet transfusions there will come a time when this will no longer be able to sustain you, it’s probably not possible to say exactly when that will be but your doctor will if pressed give you rough guide. As you say if you give over your care to the hospice, nature will take it course in a shorter amount of time but the level of comfort you would receive may be something you would prefer as opposed to the hospital option. It’s a very difficult decision to make, I have already decided that I will not take treatment to the edge and will stop and trust my hospice friends to do right by me, this is because I’ve spent the last six months learning to trust them. I have discussed all these issues with my hospital palliative care doctor which really helped me solidify my approach, so I would urge you to speak to the palliative care counsellor before making any big decisions. I would prefer to die at home, but the hospice option is better than passing away in the back of an ambulance, which is something I want to avoid. Forgive me if anything I’ve said has upset you but I speak as someone who values people being straight with me.

Thank you Jonty, yes I think I understand the path the illness will take, and I don't want to 'take it to the edge' as you say. I may borrow that phrase in my discussions. I have spoken to doctor(s) but no one ventures an opinion on timing. I see senior consultant next week but I doubt I will get much different advice from her. One doctor said they will respect my decision, interestingly with no counter argument of saying 'but you've got months yet'. It's four months since my relapse, and was told survival was going to be a matter of months, just don't know how many.

I hope I will get some clarity when I speak to the counsellor, but the longer the delay, the more difficult it all seems. I'm intelligent enough to know not to make a drastic decision when my mood is very low, but even after I am distracted for a while, it quickly goes back to low.

As for occupying my mind, I cant concentrate to read. I like music and watch TV a bit. But the mind is still free to wander and I feel the grip of - I'm not sure what it is - dread, depression, fear. Maybe all three. It fills most of the time between waking and sleeping, even when I am at outpatients and being cared for, because outpatients isn't where I want to be. I don't cry much when I am at home on my own, but I start to cry when I have to explain how I feel to other people. 

I also find when I do have visitors its often a very short lived benefit as I get tired trying to maintain a balanced conversation and take an interest in their news. 

Rang the palliative care team late this afternoon, but the person I need to speak to had gone home. Left a message and the nurse on duty was sympathetic but obviously couldn't answer specifics. Rang Macmillan for some sympathy. 

At least its bedtime now, and I seem to be able to switch off when I am cosy and drifting in and out of sleep. Oddly I don't wake up at say 3am feeling awful, I mostly sleep right through. But then I am faced with another day to get through.

Thanks for all your comments. Tessa

Hi Tessa 

It’s so very sad to hear about how alone and unwell you feel. If I was able, I’d come straight round, put the kettle on, say hi, put on an audiobook and get my crochet out so you’d not feel exhausted by a guest but you’d have another person’s quiet company. 

As it is, all I can do is send you a virtual hug and maybe natter a bit about my day. 

Well. It’s been quite busy. I get up early to keep my younger daughter company before she sets out to school. Strictly speaking I don’t think she needs me but it seems rough that she should be facing the dark morning alone. I didn’t do very well today. She’d made me tea and brought it up before I got going. 

Then it was dog walking. I drive up the road to an enclosed cricket pitch where I can let Noodle off the lead. I met my neighbour. She has fibromyalgia and insists that she is very slow. Even so I staggered along beside her with my walking stick and had to stop every so often to catch my breath. I think I make her feel quite good about herself. She says she is usually the one slowing everybody else.

I came home and woke my big girl. We played a dice game then I had a snooze while she did some university work. She wanted to go out for lunch and that was great except that I don’t have any appetite. I kind of played with my food but it was great watching her wolf down a huge portion of chicken and rice.

Then it was off to school to pick up my younger daughter, wait while the girls did the  second dog walk, off to the pet shop to see what toys they had on sale for the dog, buy some coal for the fire, then home for tea and sitting around for the evening. It was nice. 

Now I’m in bed. The girls are in bed too and falling asleep. The dog is downstairs in the kitchen whining as she’d really rather be with one of us. But she is a dog and the cats need somewhere to be safe.

I hope my sharing my day is a comfort rather than making you feel even more lonely. Please know that you’re in my thoughts - and have been many times today and yesterday 

Much love xxx

Dear Tessa, how are you today? Like the others my heart goes out to you and like Daloni I wish I could visit, just to be there and listen to you. These low moods are terrible and I always feel I will never get out of one. However, please remember we are all here for you and I am thinking of you daily. I think This is not a good time to make decisions, you are very low and sad and this is a bad time of year as a lot of people suffer from SAD at this time. Please try and nurture yourself, and take it one day at a time, don't predict the future, who knows what is round the corner?  This horrible time will pass and you will be better able to make decisions then. I see you like your garden, is there a local garden or allotment group near you? Have you looked online about getting a befriender from one of the charities or local social services? You do not have to be religious to go to church, do you have one near you where you could meet others, have coffee or speak to someone? I am sure you have thought about of all these ideas but sometimes we get to weary to think of anything  and I am keen to listen and help if I can, as are many others here. Please keep in touch and share your feelings, and remember there are many people here thinking of you and wishing you hope and peace. I hope the sun comes out soon.

Lots of love and warm hugs

Pat xxx 

Thanks for your suggestions. I've been waiting for a befriender from the hospice volunteers for several weeks. There doesn't seem to be much else available locally as I am in a very rural area. Most of the six neighbours I emailed have responded to my plea to visit, so that's good (hopefully will stagger them, not all at once). Three are from my local garden group. 

I did go out Tuesday with a friend - it was very pleasant at first but then the exhaustion takes over and I don't know if I can make it home without passing out. But I was ok.

Been feeling really rough on and off since Sunday, feeling faint if on my feet more than a few minutes, and can't stand by the sink to wash in the morning, I have to sit on a chair. That isn't just depression.

I was due to go to outpatients this afternoon, just for one bag of platelets, but I was pretty sure I needed red blood so rang yesterday and pleaded for them to get me in earlier. In fact my HB count didn't look that bad by their average numbers, but they have now accepted I need to be kept over 100 to stay well. My platelets had dived again, they seem to be on a slow moving roller coaster. In the end had a unit of blood and two bags of platelets.

Saw two doctors and specialist nurse over the day (I was there from 9am til 5pm). I asked why I felt so terrible if my HB seemed ok and they said it was the path the leukaemia was taking. One of my drugs dosage is being tweaked as it tends to kill the good cells (such as platelets) as well as the bad cells, but its only to make me feel more comfortable in the short term. One suggestion was I should go in three times a week, but I'm exhausted enough with two.

It seemed a similar message from all three, that my disease is going to be hard to keep under control much longer, maybe impossible. So have bitten the bullet and asked to start the process to get me into the hospice as inpatient. Seems the hospital have to speak to my GP and I have to go to the hospice for assessment. I pray at this stage they don't say no, though I may have to wait for a bed. I guess part of the assessment will be to see my priority.

So decision made, and I feel quite ok with it. As always with me, I am thinking of practical things, what to take, and who I need to notify (stop the milk, cleaner etc). I will tell the people I speak to often but I'm not going to notify my wider circle of acquaintances until I have had the assessment and some idea of dates. 

Thanks for all your support, I'll keep you posted how the process goes.

Tessa (sorry for long post)

Hi Tessa 

Thank you for your long post. It sounds like a very long day for you in outpatients. I’m glad you’ve made a decision that you’re comfortable with and I hope the hospice is in touch soon. 

I’m sorry you’re feeling so unwell. I was on the brink of feeling like you before Christmas. I couldn’t stand to make a meal and found myself reaching for a stool to sit on while I stirred the porridge for breakfast. It’s not a good place to be. 

I was at the trials unit today. A simple safety visit so bloods etc, chat with the doc. Even so I was there from 9 to 12.30. My haemaglobin and white blood cells are starting to drop - an expected on this new medication - but otherwise everything is fine. 

We did talk about my taking part in the PEACE study. It’s only relevant to those of us with solid tumours but it might interest you to hear about it anyway. It involves leaving your tumours to research after you’re dead. We talked a bit about it before Christmas, I did some reading last week and discussed the idea with my daughters. I said to them that I’d like to take part but that it would affect them more than me as it would involve my body being taken away for a post mortem. They both said “go for it mum. We’re right behind you.”

I told my doc today that I’m interested and the next step will be talking to the Peace team next week. I like the idea that something good can come out of this illness even after I’m gone. Here’s a link if you (or anyone else reading this) is interested: 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-at-blood-and-tissue-samples-to-learn-more-about-advanced-cancer-peace

Enough of my blather. Lots of love Tessa. Sleep well 

xxx

Dear tessa, I think going to the hospice for an assessment is a very good idea, I had one when I first started attending and get checked on weekly basis by the nurses for an update. As with all these things you have to make sure your talking to the people with the most knowledge and expertise and in this instance it’s the hospice. Your hemoltolgjist will carry on treating you long after it serves any useful purpose because that’s what they do, they are experts in treatment and simply don’t have the skills needed for advising you on your palliative care options. As with all life limiting illnesses there is a stepping down process in terms of treatment and when to stop it, I’m currently on the bottom of the stairs in regards to my leukemia so understand your situation fully. Remember once you know your options properly it’s up to you to choose which path to take, but it needs to be a informed decision so you can be at peace with things.