Have had a long discussion with the hospice nurse today an she is very concerned about my weight loss and is trying to arrange for me to see the palliative care consultant with the view of getting some respite care when I’m recovering from the rads to my oesophagus and bony mets. She is also referring me to the dietician. My swallowing is so poor now that apart from soup, yogurt and rice pudding and weetabix, everything that goes down = comes up and iit s really distressing the children now and me.
I now feel I will not make it through the summer hols without starting taxol so feeling really scared at present as I look so well and now feel that I am beginning to enter the last phase of my life which is hard to cope with.
I know I’ve been in this deep dark place before and have bounced back so hopefully the rads will help and the taxol will extend my life and maybe push then for tykerb or doxyrubicin so shouldn’t be feeling like I’ve given up but beginning to get so tired that I can see a point where I will want to give up.
I’m really struggling to get in and out the bath and get exhausted having a shopwer so hospice nurse is going to see if I can get a carer.
This all feels so unreal as sometimes I can do so much but at present my back pain is so severe I’m so limited and as I need to drive I can’t take tramadol or morphine as it makes me too sleepy and dangerous.
Sure I will come out of this pit soon but if I’m not my usual supportive, fun slef you know why.
Seeing consultant on thursday and know I need Ct scans etc and to make decision when to have rads to fit in with school hols. Dreading the results and so scared of the pain that the rads will cause.
Just needed to get this off my chest as there is really nothing any of you can do to help me in this.
Hope the rest of you wonderful people here are in a better frame of mind than I’m in and in not as much pain.
Love a very miserable Kate
Kate
Sorry to hear you are feeling low and in pain and tired,I wish I could say something constructive and insightful that would be helpful to you but its impossible to think of anything that you wouldnt have considered. It could be that the rads wont actually be as bad as you think and they may target it really really well, i hope you can dates and times sorted out that suit you as best as possible.
sending you cyber hug and thinking of you on thursday,
love
cathy
Sorry to hear that things are so glum for you at the moment Kate. I have read some of your posts in the past and I admire your grit and determination. I hope that you are able to get the help and support that you need and that the struggles you are going through now can be eased a little.
It is understandable that you are feeling apprehensive about your rads and the side effects. I hope you don’t suffer to much with the treatment … I hate the fact that the treatments for this nasty disease make ppl feel so ill.
My love and best wishes come to you.
Lilac
xxxx
Hi Kate
so sorry to hear you are feeling really low. I am feeling dreadful I hope I have not scared you that was not my intention I only wanted to tell you my reaction to the rads and hope you will not experience the same side effects. I have just had a look at my diary and I started to feel better after about 4 weeks but I also started taxol 2 days after rads so I truly hope you wont feel too rotten.
Love Debsxxx
It sounds like you are doing the right thing in terms of looking for help and options - it must be extremel difficult to make these choices but I’m sure you can trust your instincts. Thinking of you.
Geraldine
Debs - I would be in a worse starte if you hadn’t told me what it is like after rads as then I would be trying to find childcare when I am ill so it is much better I know now .
I’m low because its like the realisation that I won’t live long and how limited my options are have hit home when I thought I’d come to terms with it, The pain in my shoulder doesn’t help nor does being unable to eat. I’m low as the gem/carbo isn’t having any effect now and that’s scary.
L
Thanks to everyone else for your support.
Kate
Dear Kate - So very sorry to read that you are in a really low place right now. I do hope that you are able to get more support and help - a carer sounds a good idea. I wonder if you have a hospice any where near that offers day care. I used to work at one to which people would come for one day a week, it gave them a real break, they were able to get really good emotional support, review their medication and - which might be useful for you, have a bath, aromatherapy, hairdresser etc. I can only imagine how scared you are feeling and how bleak your outlook must feel at the moment. I do hope that your meeting on Thursday goes as well as possible, and that with a plan in place you are able to move forward a little, and with some hope of better times over the coming weeks and months. Thinking of you and your family Kate, and wishing like hell that there was something we could do for you other than sending you cyber love and hugs and support. Sarah x
Dear Kate
So sorry to hear how difficult things are for you at the moment Hoping Thursday goes well. Can the hospice offer you any treatments such as aromatherapy or reflexology which would be relaxing and something pleasant in the middle of all the awful stuff. Just want you to know that in common with everyone else who has posted that my thoughts are with you and I just hope that your medical team can find a way through for you
Kathryn
Dear Kate,
We all dip in and out of that dark place. I do hope it doesn’t last long for you but it is more than understandable that you feel like this. A carer may make life a little easier for you - give you a bit more of a chance to gather yourself for the next round.
If you have the rads sooner, rather than later, will it not be done and dealt with before the hols set in?
All I can do is offer ongoing support and admiration - I just wish there was something more. Stay strong, Kate.
Jenny
xx
Hi Kate
I’m sorry that you are feeling so down and hope the you, the Kate with the determination will come back soon. Have you asked your onc if there is any drugs licensed but not stamped by NICE that may help you such as Avastin etc.
I think we all have down days but it’s the dealing with the “running out of time/options” that must be hard to take. I was only diagnosed with secondaries in February this year and am due to get my 6th taxotere tomorrow and I feel s**t and really p*ss** off sometimes that I have been dealt this hand in life. Especially for my kids who are 9 and 6 I hate them having to see the Mummy ill after the chemo - but it’s just one of these things!
I really hope and pray that the rads are not as bad as you are expecting, everybody is different. At my primary diagnosis I managed my rads and chemo at the same time along with work. I’m not looking for a pat on the back or anything I just genuinely felt okay and able to do it - so here’s hoping you fell better than you think you are going to. In my mind there’s nothing wrong with bracing yourself with how bad this could be and if it turns out not to be then it’s a bonus.
Lots of love and best wishes
Diane
xx
Dear Kate
I am really so sorry that you are not feeling great right now and things not working to plan as you/we would like. That dark place is an awful place to be and yours sounds to be even darker right now.
You must be so frightened and worried about the future, god knows we all are, but not in your position as such.
I hope that the rads do help you greatly and that you bounce back and become the strong, gritty Kate we all know and love so much. I think that we all gain so much strength from you and your posts, and are all hoping that treatment starts to work again soon for you.
Take care and sending lots of love
Dawn
xxx
Dear Kate,
Everyone has been touched by your posts which show such wonderful courage, determination and kindness. Each time we climb out of these horrid places, we should be patting ourselves on the back - you have done it before and I know you will do it again. As others have said, I hope the hospice can offer something that helps get you back to a better place.
I hope that Thursday’s appointment goes well and that get some plan of campaign sorted.
Sending you as many positive thoughts as I can.
Gill
Dear Kate
So sorry to hear that you are in “the dark place” at the moment and really hope that you will indeed bounce out of it (as you put it) soon. It is such as scary place to be but is also the place we all tend to fall into when things are uncertain and change is happening. So am hoping that when the new treatments are started, you will feel better able to cope with things. And getting a carer seems a good idea too as hopefully it should help you conserve your energy etc for those things that will give you and your family happy moments.
Trust the appointment on Thursday goes well.
Thinking of you lots
Kay xx
Dear Kate
Just wanted to add that my support and thoughts are also with you, as you said there is nothing we can say or do but to support each other in this way, just wish we could all do more to help each other. Take Care, Liz x
Dear Kate
I just wanted to say that I am thinking of you like everybody else is. I know things have been really bad before and you’ve bounced back and I’ve seen/heard it from other ladies too who’ve been very ill so there is still hope and let’s hope that you manage to start your treatment again very soon.
Sending you big hugs
Ruby xxxx
Hi Kate - I hope you don’t mind me posting here - I haven’t posted for ages. Just wanted to pick up on the referral to a dietitian. I work as secretary/admin for my local PCT Community Dietitians and I think there should be quite a lot they can help you with - have you seen one before? Obviously there are lots of different supplement drinks/soups/puddings and thickeners which they can prescribe to help with the swallowing problems - try and push for an early home visit - the sooner they see you they might be able to help prevent further weight loss. They also have good tips etc for different foods/consistencies etc. My boss goes to the local hospice twice a week so you might see one quicker at the hospice than in the community.
Have you been prescribed Calogen?That is really calorie dense and comes in neutral and strawberry flavour and you only need to swallow a small amount of it.
I hope I haven’t intruded on this post at all but have followed your posts and just think you are a really special lady and my heart goes out to you and your family.
Lots of Love
Sarahx x x
Could you ask re diffrent pain meds - I found fenantyl made me less tired than morphine, and sterioids = good for energy + scikness + eating - may be worth a talk to your pallative team?
hope helps, take care
susie
Dear Kate
I have followed some of your posts when I get a chance and want to wish you the best and hope that you get your treatment soon and will indeed enjoy another summer. You are in my prayers Kate, a beautiful kind lady indeed.
Positive thoughts coming at you full force…x
Love P xx
Hi Kate,
Sorry to hear that things are really bad at the moment.
I hope you get some form of decent pain relief and something you can eat to help ease your problems.
Take of yourself.
Love (Chemical) Kate xx
Hi Kate,
Like many others I’ve been really inspired reading your posts and your blog. I’m sorry things are so difficult for you at the moment and all I can say is that I’m thinking of you and your family and so hoping you get some relief from your pain and that you will bounce back again and I don’t mean that to sound flippant.
Sending very best wishes,
Anne x