How are you Nicki, Ellie and LA

[millyjo]

Hello,

Keep checking to see how everyone is doing, but in particular Nicki, Ellie and Lesley Ann.

Not wanting to sound uncaring in not enquiring about others, as I care deeply.

But just wanted to enquire about those I have mentioned, and to let them know my thoughts are with them.

Millyjo xx

[Ellie]

Hi Millyjo

Thanks for asking how we are all getting on.

We've just had an awful 2 weeks. Brian was suddenly very weak, depressed, constantly falling asleep and withdrawn. I was so worried, that my daughter took a week off work to come and stay. However, we then worked out that a slight change to his drugs must have caused most of the problems and we've re-adjusted them and he seems to be picking up again.

The biggest problem now is that he has lost all the strength in his legs. In fact, we are getting a stairlift installed today, so at least he can get up and down to the bathroom and bedroom with a bit of independence, without me having to help him all the time. I hadn't realised that you can actually rent a stairlift, short or long term. Just thought I'd mention it, in case anyone else was struggling and didn't know about renting.

Apart from that, we are still trying to get out and about as much as possible, using a wheelchair for Brian.

Hope everyone else is getting on ok.

Best wishes to you, Milljo.

Love

Ellie

xx

[Nardobd]

Hi Millyjo and thanks for your message - it's so nice for someone to ask.

Ted isn't doing so well. His last scan showed an increase in the tumour and he's on capecitibine chemo. It's giving more side-effects than the gemcitabine and he gets pretty tired with a lot of nausea. Added to which he's getting a lot more abdominal pain which he insists has nothing to do with cancer - he's still in denial.

From my perspective, he's generally weaker and less well. I don't know whether it's the nausea but his appetite is waning. It sounds terribly overly-dramatic but my impression is that his health is deteroriating before my eyes. Of course, my perception may be skewed because I am desperately tired and feeling very guilty - with the year-end it's been horrendously busy at work and I've been going in early and staying late. It's really a catch-22, because when I go home leaving piles of work I feel guilty about not staying and when I'm at work I feel guilty for not being at home to look after Ted. Feeling guilty means I can't go to bed without being almost asleep already because otherwise I lay there with it all going round and round in my head, which means I'm more tired and it seems like an ever-decreasing circle!

Ted's consultant has given up trying to explain what to expect because Ted doesn't fit the "usual course of the disease"...of course I'm pleased he doesn't because it's meant that he's survived over two years after diagnosis. I feel we've been very lucky yet at the same time I just want some answers. Looking forward I don't know how - or if- I'll cope.

Wow, what a whinge! I'm tempted to delete all of this but I needed to get it off my chest and who knows, it might just resonate with someone out there who's feeling alone.

Sorry guys

Nicki

[ladywood]

Dear Nicki, just wanted to say I'm so sorry to hear Ted isn't doing so well at the moment, it must be so difficult juggling work with looking after him, I can just imagine how stressed and exausted you must be feeling. I know theres nothing I can say that will help you, just the usual, take one day at a time, and most of all be kind to yourself. Easier said than done I know, but just want you to know I will be thinking of you as will many others on this site and I really hope Ted has a better week this week. Lots of love Marie

[Ellie]

Hi Nicki

So sorry to hear you're going through a rough patch. We've all been there and that's what we are all here for - to listen and support each other. I know what Brian went through with his chemo and I was working, too, so I completely understand the conflict of emotions. You have not only been a rock for Ted, but to a lot of people on here, so it's our turn to try and help you feel better at the moment.

I don't have any answers for you but just wanted you to know that you are in my thoughts and I hope that things will quieten down at work, so you can at least not have to worry about that side of things.

Sending love and a big hug. Look after yourself, won't you.

Love

Ellie

xx

[lawalsh]

Good morning,

Firstly, thank you for asking, so kind of you to think of us, I've been thinking of everyone too. Well, I'm good thanks, for the moment. We had a holiday booked to go to St Lucia in the Easter holidays. I cancelled it, dad went mad, so I re-booked it and went two weeks ago, it was all a mad rush, we got back Saturday. It was all with the intention of getting back for the start of his chemo yesterday, however, they brought that forwards and started whilst we were away. I really needed the break because I was becoming mentally and physically exhausted, and I now feel a bit clearer and more able to move forwards.

Dad'd first week went well, no side effects and he is in really good spirits. He seems to be having more quality times with my mum and all of us in fact, and he is out to fight it till his last breath. I feel that we might have a Nicki and Ted story on our hands here, and I really do hope so. I have been reading a lot about healing after what Nicki wrote a few weeks ago, having trained as a healer. There is one at the hospital and we went to see her yesterday, she was a lovely lady and it gave us all something spiritually. Dad is back on the drip again today, but he is very upbeat and I do believe in the power of a positive mind. I was reading a book called 'Conscious Medicine' whilst on holiday, also 'Hands of Light', I know it all sounds a bit pie in the sky-ish, but I think mentally we can all help to pull together and to some degree, help heal along side what the NHS has to offer.

Nicki, I know what you mean about not being able to get to sleep at night, what about reading to make your eyes tired and sleepy? I don't mean the type of books I've just mentioned, but what about somethng funny or romantic (what about Jilly Cooper, a good Yorkshire lass, she writes very funny novels!!!).We have a kindle, my hubby and I, best money ever spent, because you don't have to have the light on because it has a very dim integral light itself, leaving your partner to get off to sleep in the dark themselves. But also, for 10 or 15 minutes a night, it does give you a bit of escapism and makes you sleepy. You probably do it anyway, I'm just trying to help. I hope Ted gets better, he has had an amazing outcome really, considering the rest of the stories on here, I just hope his comfort, for the sake of both of you, gets better. I think there might be a lot to say for his denial, good for him, if it gets him through then good. You take good care of yourself though Nicki, you need a break by the sound of it, hopefully you'll get one with Easter coming up.

Please keep in touch everyone, I was thinking of you all whilst I was away, let me know how you're going on.

Love LA xxx

[Ellie]

Hi Lesley Ann

Glad to hear that you had a lovely relaxing holiday, which helped give you some breathing space and made you a bit stronger to help your dad. Good to hear that he's done ok with his first week of treatment, too.

I can agree about reading to get you to sleep. Someone lent me the whole set of Harry Potter books and, although I laughed at them at first, I ended up getting hooked and reading the whole lot. They are easy to read and such fantasy that they take your mind off everything for a while.

Sounds like you and your family are feeling very positive and that bit stronger now, so stick to whatever works for you.

Sending hugs and best wishes to everyone on the forum.

Love

Ellie

xx

[lawalsh]

Dear Ellie,

What a lovely message,thank you!!

I think poor Nicki hasd had the best and the worst of everything, she's kept her husband with her against the odds, but sounds torn with her job and her loyalty to that too. Books are good for a bit of escapism and lifting your heart and making those eyes sleepy at night. I struggle with sleep too, and withactually staying asleep, I sometimes wake up after a couple of hours and am wide awake. But anyway, hopefully she will reply with an update and we will see how she is doing.

Bye for now, sending you all a big hug xxxxx

[lynbo]

Hi LA

nice to see you back, and yr dads treatment going ahead and going well.

Ive asked my mam to go home today, she sleeps every night, but my dad has high blood pressure, and I don't want to spoil their time together, they have a caravan, and will start going there soon so I figured I need to get used to being in on my own?

Even though I hate it, it just doesn't feel right, and my concentration span is nil.

Anyway, chin up.

I have booked my accommodation for when I do the 23 mile striving for survival walk!

All for PCUK.

also, I've just had a big angel tattoo on my ribs! It's for my Andy, yes, I'm mad

Xxxxx

[lawalsh]

Dear Ellie,

I've left it a couple of days to ask how Brian is? You say he was starting to pick up with the adjustment of the drugs, how is he now? I really hope he is a bit better and in turn you are having a better time of it. It's just one big rollercoaster, good days, bad days, but we're thinking of you Ellie.

Also Lynne, no you're not mad, if angels wings are for your Andy then good for you. And 23 miles, my goodness, I think you're the angel!! He will be very proud of you looking down on you. Getting used to being on your own, wow, that's just going to be so hard because it's so different, but I know you'll find the strength from somewhere. Parents are just wonderful and no matter how old we are, we still need them.

I'm thinking of you, and sending you a big hug.

Love LA xxx

[Ellie]

Hi Lesley Ann

Thanks for your message. Brian has had a bad couple of days but has picked up again today. I think the bad days are getting more frequent and affecting him more but we are just grateful for the better ones.

Tomorrow is my birthday. On my birthday two years ago, I was told Brian's chemo was no longer working and care would become palliative. What a present that was! He was given 6-12 months, so he's exceeded that time, which is what I am so grateful for. Hoping we can go out in the sun tomorrow to visit a local park and enjoy the spring flowers. That will be really special because I didn't expect he would be here this time last year - in fact, there were times in the last few weeks when I didn't think he would be here either.

Hope you are ok and your dad is well today. Keep strong!

Love

Ellie

x

[lawalsh]

Happy birthday Ellie!!

Well, to be given 6 to 12 months and then to be here 2 years later, that's just fantastic. The sun is shining here in Yorkshire and I'm hoping it is there for you too, I hope today is special for you both....go enjoy the sun and the fresh air and as you say, the flowers in the park will be lovely. Also, the children are off school and I think having children and young voices around can be uplifting.

Have a wonderful day, both of you...

Love LA xxx

[Ellie]

Hi Lesley Ann

Thank you for your very kind wishes! I, too, am in Yorkshire and yes - it has been a lovely warm, sunny day (for a change!). We've just had a lovely few hours in a big park, watching the kids and ducks on the boating lake and enjoying a nice lunch. The simple things that others take for granted have become very special to us. I feel sorry that we can't do the things we used to, like hiking across the moors or going away in our caravan, but on the other hand am grateful that Brian is still here with me and we can still get out and about, even if it is limited with a wheelchair.

Hoping you and everyone else will have a taste of the sun this weekend and is able to enjoy it, in one way or another.

Love Ellie

xx

[ladywood]

Happy birthday Ellie, so glad you and Brian had a lovely day and I hope you spend many more lovely days together.

I know you feel blessed to still have brian with you. Enjoy the rest of the weekend. Thinking of you. Marie

[Ellie]

Hi Marie

Thanks for your kind thoughts. I wasn't trying to make a fuss about my birthday - just that it brings back memories of 2 years ago....thank you anyway.

How are you doing? Hope you are ok.

Love Ellie

x

[Ellie]

Message for Nicki

How are you this weekend, Nicki? I hope work has quietened down a bit for you so that you are less stressed with everything. Have you managed to catch up on your sleep at all? Being tired just drags you down and everything seems so much harder to cope with.

How is Ted doing? Is he still getting the side effects from his chemo? How is his pain? I hope he's improved, which will in turn make you feel a little less upset.

Just wanted you to know that I am thinking of you and truly hoping that you are feeling a little brighter than in your last post. We all have those bad days, when it almost gets too much to deal with, especially when, like me, you've been caring for someone for a long period of time. I know you will be fighting to bounce back and hope you get chance to relax a little this weekend.

Take care of yourself and please let me know how you are.

Love

Ellie

xx

[Nardobd]

Hi all. I'm just about to get on with some work so I'm sorry this has to be short.

LA I'm pleased you had a good break and that your Dad seems to be doing well. I'm strange in that reading doesn't make me tired - perhaps because as a lawyer I'm used to having to pay attention to wording, but thanks for the thought.

Happy belated birthday Ellie, and I'm so pleased that you enjoyed your outing with Brian.

Thanks all for your thoughts and comments. I'm sure that when it's no longer so busy at work and I can get some decent sleep I'll be fine. It's difficult to be positive when you're tired.

A longer message anon but in the meantime my love to everyone.

Kind regards

Nicki xx

[lynbo]

Hi Nicki, Ellie, LA

my tattoo has healed, and today I decided to enjoy the sun in the garden, I found my lounger in the shed, with a big White feather on it, I believe a sign from Andy.

Happy Birthday Ellie

Nicki, hope you are getting some sleep?

LA still can't find you on networking site?

Anyway, was just catching up on here before bed, it's now 2am?!

Love to everyone

Xxxxxx

[Nardobd]

Hi Everyone

work is starting to settle down which is good news - still very busy but less firefighting. Now that I have time to sleep, I just have to get out of the routine of waking up early!

Ted is still getting stomach pain but it is a little better, or at least he says so. Being as stubborn as he is, I sometimes wonder. His general fitness level is worrying though and he needs frequent rests.

As Ellie has said before, it is the vagueness and "not knowing" that is the worst. I seem to be going round in a permanent state of anger and frustration - it's not a feeling I'm used to and I don't like it.

Ellie, how are you and Brian doing?

LA how is Dad?

Lynne, I know you will treasure that feather - items which are thought to be from 'spirit' are called "apports".

Marie, how are you doing? Lots of love to you.

thoughts of strength and comfort going out to all of the people on this forum.

Nicki xx

[ladywood]

Hi Nicki, nice of you to ask about me. I am ok, still very sad of course and upset when I think of the pain Linda must have suffered before she was diagnosed, she must have been so scared and yet none of the medics took proper notice until it was too late. I'm finding it hard also to help prepare her house for selling, it was a little safe haven for me many a time and she worked so hard to get it nice. I wish I could win the lottery and buy it! Life goes on though, I went back to work a couple of weeks ago which I was dreading but actualy it was fine and I think it probably did me good. , I'm also enjoying this lovely weather and appreciate the fact that I only have to work part time. I went out last night and shared some wine with a good friend and that was nice, and also enjoying spending time with my husband going for walks ect.

I'm glad work has calmed down a bit for you, I dont know how you cope with such a stressful job and looking after Ted as well. I'm glad his pain has improved and I know if he is feeling a bit better you will also. He must be such a strong character Nicki! Hope your sleep has improved too, everything seems so much worse when you are very tired.

Hope you manage to have a rest over this weekend and hope Ted continues to feel ok. Will be thinking of you. Have a very happy and peaceful Easter. With love and hugs Marie

[Nardobd]

Hi Marie

I'm glad that going back to work was positive for you....I think it's one of those situations where the dread is worse than the reality.

Ted has good and bad days still - he was in a lot of pain last night but that was the first time for a few days. He is so very strong and we pull each other through the bad times. Sleeping is still an issue for both of us but we're getting there.

Have a lovely easter.

Nicki x

[millyjo]

ve

[millyjo]

Hello everyone,

I have been checking in on posts on a regular basis, just to see how you are all doing. But obviously as posts are so many it is difficult sometimes to follow through.

So can I ask how you all are, especially Nicki/Ted and Ellie/Brian.

You have both been coping with your own hardships but also supporting others in difficulty, and I'd admire you for doing so. My thoughts are with you and with everyone going through this.

It has been almost two years since I lost my mum, but I'm still in shock at the horror of this disease.

I send my love and hugs to you all

Millyjoxx

[lynbo]

Hi nick, Ellie, LA, millyjo, Marie and all

It's half past midnight and I've just collapsed into bed.

Today - I walked 23 miles fir the K2B keswick

To barrow striving for survival walk.

I had, PCUK t shirt with my Andy's picture on, purple shades and purple hair!

There were 10 in our team, but myself and my friend Rachael completed in 6 hours 32 mins.

Emotional - yes, worthwhile - yes.

My legs don't feel like my own, but between us I think we have raised £ 2.000 plus?

All for PCUK.

so, just to say, while I was walking, I was thinking of us all, and our circumstances, and I did my very best for ALL of us on here, and our loved ones , past and present.

Goodnight

Lynne

Xxxxxxx

[Ellie]

Hi Lynne

What a fantastic achievement! Once your exhaustion has passed you should feel so very proud of yourself for what you've done and the huge amount of money you have raised! I'm sure Andy would be so proud of you. Well done to you! x

A lot has been happening with Brian, but will post about that later.

Love to everyone

Ellie

xx