Revision TKR Chocolate at midnight<

[turtle68]

Sue, thinking of you. You have such a great, positive attitude, and we will be supporting you all the way.

Hugs, Dorothy

 

[new knee in June]

Dear Sue,
I want you & your family to know you are in our thoughts & We will be here to support
You We Care....please keep posting when you can.
Best Wishes & Hugs,
Diana

 

[Toothfairy]

Hi Sue,
You are one truly amazing woman.
I am in awe of your calm courage.
It sounds as though you have a good treatment plan ahead and a wonderful positive attitude to help you through.
Your family also sound great and truly there for you.
In addition you have many BS friends ready to travel the road with you as best we can.
Take care,
Sending hugs your way,
Toothfairy x

 

[robynhood]

I agree with TF. I really don't think I could calmly write the way you are but then you never know how you would cope until it happens to you. You really must be a strong woman. Your family will have to be strong too. It seems like everyone knows someone going thru this. My childhood friend is going thru it for the third time. I just be there for her and I'm sure your friends will be too. You have my admiration Sue. And I can only echo what others have said. Your Bonesmart family will be here for you always x x


Sent from my iPad using BoneSmart®

 

[leejaa]

You are truly amazing. My thoughts will be with you as you begin this new journey.

 

[Bionic woman2]

I'm with Carol on the speechless thing ( believe it or not I can shut up.)

I'm glad you have a positive outlook, but I won't hold you to it; whenever you feel down we are here for you. We are your "friends in the screen." Like Whovilles in the Dr Seuss children's show, you can't see us but... WE'RE HERE.. WE'RE HERE... WE'RE HERE!

 

[Pumpkin]

Thinking about you today, we are here when ever you need support.

 

[tashia]

Sorry I have been away for a while, I did read all your posts. I know that things are ruff right now but your attitude will help you get thru this. We are here and care very much about how you doing. Not being able to go places is ruff but you can here. Also do visit the Social Room, it has lots of topics including sewing. We are always here so if you need us we are here. Please take care and keep us posted on how you are doing. Tashia

 

[Dabber]

Made an appointment to see my knee consultant next week, a month early, as Chemo starts on Friday 1st November. Swollen leg is going down a bit which is a nice surprise as I was warned it could take weeks.
Bone marrow biopsy today, all I can say is ouch.
Back to doing daily blood thinning injections.

 

[robynhood]

O dear Sue. Do you never get a rest. Glad the swelling is going down a little. I remember my Dad having bone marrow taken. He said it was very painful. Hope your appt with Tomas goes well. Sending you warm hugs x x


Sent from my iPad using BoneSmart®

 

[Dabber]

robynhood there seem to be appointments/phone calls most days, bloods alternate days at the moment. The knee feels a bit better, I'm not sure when I'll be able to get to the Nuffield in the next 6 months so I thought it best to go whilst I can.
I'm not sleeping well with the steroids I have to take, but am very tired tonight.
Sue

 

[new knee in June]

Dear Sue,
Sorry your procedure was so painful. I think it's a good idea getting your knee checked
Out a month earlier. I'm happy your swelling has gone down & I hope you have a good night
Thinking of you this evening,
Diana

 

[leejaa]

Sending warm and positive thoughts your way.

 

[tashia]

So Glad that your knee is going down. I know that it going to be very busy for the next couple of months. Please remember to rest whenever you can. Take care and remember we are sending you hugs from all around the world. Tashia

 

[patient 99]

Hi Sue, How are you getting through the days? Have you found a bit of a routine to help you manage things? Carol

 

[Dabber]

@patient99 Hi Carol, there seem to be appointments most days, bloods alternate days: Mon/Wed/Fri/Mon, the family meeting was on Monday, bone marrow biopsy Thursday.
Today I had to walk to the surgery and had a little trot around town. It brought it home to me that I hadn’t realised how ill I was becoming down through the months/years. This has all been masked by thinking it was normal getting older/osteoarthritis/bradycardia/just me degenerating.
I felt like an old lady with my walking stick and brain fog….it’s cancer, guys!
Not so long ago I’d out stride anyone, walk instead of ride, run instead of walk.
Mostly I’m resting on the bed, reading info, reading a novel, watching TV and playing a mindless game for the first time in my life on my phone; getting to grips with the whole scenario.
In spirits I’m good, I have friends battling cancer, and I have a lovely family.
Perhaps the steroids are talking….I’m taking enough, it will be 20 on day 1 of treatment.
Knee feels heavy, tight and rather artificial but it’s been side-lined and as I said to my long suffering Dh, it’s only 5 months down the 12 months pathway. I think I’m fortunate the knee is progressing normally, especially considering everything it’s having thrown in its direction.

 

[patient 99]

What a `sharing' post. It felt like you were really talking to me. Sue, I don't know the rules for this game, so if I ask or say anything that oversteps the mark, please forgive me. I don't mean to be intrusive, but I cannot, and don't want, to keep on saying stuff like `hang on in there'. So the preamble over, I wanted to ask if with hindsight there were signs all was not well long ago? You mentioned above attributing things to just the usual aging process. It made me wonder if we are all too ready to just battle on - stiff upper lip and all that xxxx.

I can so identify with that before/after wake up. Before my knee op I would work all day in the garden - real heavy work. I'd go on holiday and walk again from morning to night - no problem whatsoever. Now I am pleased if I manage a few hours. I think its because it smacks you in the face rather than something that is gradual that causes the sadness.

Have you been offered any counselling or a support group? I know BS is ready to offer support, but there's nothing like the real world. Also like BS for knees is there a forum for your type of cancer? I always think that the `head' gets forgotten by the experts when fighting a serious illness.

Its weird to hear you say that your TKR has taken a back seat. Of course that is to be expected, but for folk like me it remains the centre of my world. Their is a lesson there somewhere - come on Sue clarify it for me.

All my love. Carol

 

[Mutley]

Hi Sue,
Just wanted to add that I too am thinking of you. As my stalker, Carol has pointed out to me, I need to get off my backside & seek some help in sorting out my leg problems. Reading your posts, the one thing that comes across loud & clear is that the NHS are trying to look after you, even though it seems you have to suffer at each medical intervention You seem one very gutsy yet philosophical lady & for that I applaud you x Take each day as it comes, just like you have with your knee recovery. Good or bad, up, down, peaks & troughs. Never feel guilty for how your feeling or what you may say. A family like yours will understand & accept & your Bonesmart ' virtual' friends will always be here to listen & support in a less ' visual' way! Stay strong my friend & we will all stay strong for you too... xx

 

[Dabber]

Yes, with hindsight there were signs but they were misinterpreted. I'm not sure it would have made much difference as treatment is often delayed until symptoms occur and it was found through the symptoms that took me to the GP/out of hours.
I seem to have a dedicated and experienced nurse I can phone any time. There are forums but not like this, I do have other friendship/support groups on the internet from various life events with both real and cyber friends in them and friends struggling with cancer.
I have a lot of information and am researching as I was a bit of a science student.
I'm not absolutely sure I want to go down the support group route with this, as unlike TKR results aren't always positive, well they aren't with TKR but you get my gist.
I can have some alternative therapies I believe, at a hospice.
Unlike TKR, I have little choice about whether or not to have treatment so a certain amount of this has been taken out of my hands. With my dx it's not like an alien lump to focus on, that makes it for me easier in some strange way.

My knee is, I think, OK and will just get better and better. I did think I should ask my orthopaedic consultant about the infection aspect as I shall have little resistance to infection, there will be antibiotics in the chemo.

I'm just going to go to ground, concentrate and get on with it......after doing various jobs this week.....a night away tomorrow, taking granddaughter to buy her birthday present, knee surgeon, hairdresser....chemo Friday 8.30am.

I really appreciate all messages, you're all great "virtual" friends.

Sue

 

[patient 99]

Hi Sue, What comes through loud and clear is that you have a lot of support from all sorts of different places. I was going to say that you are lucky to have that. But I am not much of a believer in luck. You have what you've got because of the groundwork you have put in previously. People love you. People like you. You did that - not luck.

Earlier you said you didn't think you would be able to get out and about because of fear of infection. From what you say above that seems to have changed? I wonder what else might change. I don't know what they have told you exactly, but there seem to be more and more success stories. What has your research brought to light?

You know I'm watching Breaking Bad right now. The main man Walter White has lung cancer. He's responding well to the treatment and is currently in remission. Walter decides that he wants to ensure his family is financially secure, so being a scientist he ends up making crystal meth. I tell you all this because you mention that you too are `a bit of a science student'. Now Sue, be warned, DONT do a Walter White - he encounters some pretty 'orrible characters. morale of the tale: you wont get rich, but best stick with us Bonesmarties. xxx Carol