[Misc] It doesn’t really matter, does it?

[Lever]

a) She had a PET scan done on Monday, in Maidstone Hospital shiny new PET and CT scan centre. Like you, my understanding of this is they will use this initial scan as a measurement or control guide for any reductions in her tumours. They have also indicated it may be able to show up any other possible areas of concern. As of yet, as far as we are aware, they haven't had the results back for this.
b) I didn't know that, I have started reading bits and pieces on the Cancer UK website, but until we know exactly what my wife has there is too much to take in.
c) I had seen the watch & wait policy mentioned on the Cancer UK website. I believe this is more the case for those that have Low grade Lymphoma, but no visible signs of cancer - my wife has a golf ball size tumour that is pressing on her urethra, causing issues with her right kidney. This is the tumour they are focussing on - however they said from the most recent CT scan that she has the starts of tumours showing in the lymph nodes above and below the diaphragm. Our belief, and the doctors up until Friday, was that this was an aggressive fast growing High grade lymphoma, and was being treated as such.
d) Again, I only know from what we have been told, The Royal Marsden took a biopsy of my wife's tumour in early December, they then confirmed it was Lymphoma and passed us onto our local oncology unit at Maidstone. They informed us the Marsden pathologist had indicated it was High grade lymphoma, but the consultant said they always do a "second opinion" check from their own pathologists - it was this check that brought back the new belief that it is in fact Low grade Lymphoma. My wife's consultant then said, on Friday, that she wasn't happy to treat without full confidence in what it was she was dealing with - the sample slides have now been sent to Kings Hospital and we await the results.
e) that would seem sensible - I will be surprised if the results from Kings comes back as Low grade, and in some ways, although the treatment for High grade is more aggressive and unpleasant, it appears the long term prognosis is more certainty after this treatment. The type of person my wife is, she will not cope with the Watch & Wait policy of Low Grade NHL.

To be honest, if they have defined the staging of her cancer this information has been lost to us, amongst all the many other bits of information, tests and scans that she has been through in the past 10 days, so my simple answer is I don't know.

I am going to collect my beautiful wife at 2pm today, to bring her home for Christmas, and possibly the New Year, depending on how quickly Kings work on the biopsy slides.

We can then hopefully face the future together, once the doctors have all the information they need.

Full update!
Thank you and warmest wishes

 

[darkwolf666]

Sun Comes Up It’s Tuesday Morning

The delight of being told she could come home was short-lived. My wife is struggling, struggling to cope with not now knowing what her actual diagnosis is, and most importantly not being able to cope away from the safety of the cancer ward. She felt so safe there, everything was done to a strict routined timetable, OBS, breakfast, bloods, washed, cup of tea, lunch, OBS, bloods, snack trolley, etc. The day was so organised.

I am trying to replicate that routine, but unfortunately just get snapped at. I tell her not to overdo things and politely get told not to be silly, yet I’m right when this morning she is in pain, from doing too much...

She normally enjoys Christmas so much, but this year it has passed her by, the worry before hospital and the 10 days leading up to it, have robbed her of that Christmas feeling this year, she is now just sitting, waiting for the call to say that Kings have made the “lead judge” decision and she can get on with her treatment.... roll on the NewYear!

 

[dazzer6666]

Sun Comes Up It’s Tuesday Morning

The delight of being told she could come home was short-lived. My wife is struggling, struggling to cope with not now knowing what her actual diagnosis is, and most importantly not being able to cope away from the safety of the cancer ward. She felt so safe there, everything was done to a strict routined timetable, OBS, breakfast, bloods, washed, cup of tea, lunch, OBS, bloods, snack trolley, etc. The day was so organised.

I am trying to replicate that routine, but unfortunately just get snapped at. I tell her not to overdo things and politely get told not to be silly, yet I’m right when this morning she is in pain, from doing too much...

She normally enjoys Christmas so much, but this year it has passed her by, the worry before hospital and the 10 days leading up to it, have robbed her of that Christmas feeling this year, she is now just sitting, waiting for the call to say that Kings have made the “lead judge” decision and she can get on with her treatment.... roll on the NewYear!

Stay strong for her fella.......she needs you not to react to her feelings other than to give her a hug. Wishing you all the best...cancer is a ****, don’t let it dominate your lives.

 

[Bry Nylon]

Sun Comes Up It’s Tuesday Morning

The delight of being told she could come home was short-lived. My wife is struggling, struggling to cope with not now knowing what her actual diagnosis is, and most importantly not being able to cope away from the safety of the cancer ward. She felt so safe there, everything was done to a strict routined timetable, OBS, breakfast, bloods, washed, cup of tea, lunch, OBS, bloods, snack trolley, etc. The day was so organised.

I am trying to replicate that routine, but unfortunately just get snapped at. I tell her not to overdo things and politely get told not to be silly, yet I’m right when this morning she is in pain, from doing too much...

She normally enjoys Christmas so much, but this year it has passed her by, the worry before hospital and the 10 days leading up to it, have robbed her of that Christmas feeling this year, she is now just sitting, waiting for the call to say that Kings have made the “lead judge” decision and she can get on with her treatment.... roll on the NewYear!

I know this doesn't mean alot, and it doesn't change anything, but tonight you and your family are very much in my thoughts.

Peace to you all.

 

[zefarelly]

Just do your best to enjoy what you can, it's painfully difficult, and I've only had minor experience with my late father.

Just be true, to yourself and your wife, that's why she loves you, you can do no better. No one will ever expect anything different.

 

[Blue shirt and passport]

Sounds to me like you are doing a wonderful job being there for your wife and family.

Wishing you all a merry Christmas.

 

[cheshunt seagull]

Sun Comes Up It’s Tuesday Morning

The delight of being told she could come home was short-lived. My wife is struggling, struggling to cope with not now knowing what her actual diagnosis is, and most importantly not being able to cope away from the safety of the cancer ward. She felt so safe there, everything was done to a strict routined timetable, OBS, breakfast, bloods, washed, cup of tea, lunch, OBS, bloods, snack trolley, etc. The day was so organised.

I am trying to replicate that routine, but unfortunately just get snapped at. I tell her not to overdo things and politely get told not to be silly, yet I’m right when this morning she is in pain, from doing too much...

She normally enjoys Christmas so much, but this year it has passed her by, the worry before hospital and the 10 days leading up to it, have robbed her of that Christmas feeling this year, she is now just sitting, waiting for the call to say that Kings have made the “lead judge” decision and she can get on with her treatment.... roll on the NewYear!

Sounds like you are having a really rough time. This is a really scary stage as you are waiting to know what the treatment will be but I hope that when a plan is agreed you will be able to settle into a routine. I totally understand how she feels about leaving the ward. I couldn't wait to get out of hospital in July and then felt vulnerable without the attention. All you can do is to hang in there, she will really be appreciating what you are doing but maybe finding it hard to show it. All the very best.

 

[Motogull]

but unfortunately just get snapped at. yet I’m right

Sounds about right. That's your 'place'. She needs you to sound off at if you know what I mean. You can take it just don't take it personally because it isn't meant that way. It shows she loves you.

All the best.

 

[LamieRobertson]

Sun Comes Up It’s Tuesday Morning

The delight of being told she could come home was short-lived. My wife is struggling, struggling to cope with not now knowing what her actual diagnosis is, and most importantly not being able to cope away from the safety of the cancer ward. She felt so safe there, everything was done to a strict routined timetable, OBS, breakfast, bloods, washed, cup of tea, lunch, OBS, bloods, snack trolley, etc. The day was so organised.

I am trying to replicate that routine, but unfortunately just get snapped at. I tell her not to overdo things and politely get told not to be silly, yet I’m right when this morning she is in pain, from doing too much...

She normally enjoys Christmas so much, but this year it has passed her by, the worry before hospital and the 10 days leading up to it, have robbed her of that Christmas feeling this year, she is now just sitting, waiting for the call to say that Kings have made the “lead judge” decision and she can get on with her treatment.... roll on the NewYear!

Seems inadequate to say...but thoughts with you.

 

[Lever]

Sun Comes Up It’s Tuesday Morning

The delight of being told she could come home was short-lived. My wife is struggling, struggling to cope with not now knowing what her actual diagnosis is, and most importantly not being able to cope away from the safety of the cancer ward. She felt so safe there, everything was done to a strict routined timetable, OBS, breakfast, bloods, washed, cup of tea, lunch, OBS, bloods, snack trolley, etc. The day was so organised.

I am trying to replicate that routine, but unfortunately just get snapped at. I tell her not to overdo things and politely get told not to be silly, yet I’m right when this morning she is in pain, from doing too much...

She normally enjoys Christmas so much, but this year it has passed her by, the worry before hospital and the 10 days leading up to it, have robbed her of that Christmas feeling this year, she is now just sitting, waiting for the call to say that Kings have made the “lead judge” decision and she can get on with her treatment.... roll on the NewYear!

Thank you once again for sharing your experiences; all the very best to you and those you love.

 

[Icy Gull]

Stay strong, thinking of you and your family and hoping for some positive news for you all.

 

[Weststander]

Hi [MENTION=33649]darkwolf666[/MENTION]. I hope you guys have a nice Christmas Day, despite the circumstances. All the best.

 

[murciagull]

Thougts are with you as well. Reading this thread makes all the small things we have to suffer seem insignificant.

Fingers crossed for a better new year.

 

[Green Cross Code Man]

Just stumbled across this thread. All the best to the OP in such hard circumstances. I hope things start to get better soon.

 

[Wardy's twin]

Sun Comes Up It’s Tuesday Morning

The delight of being told she could come home was short-lived. My wife is struggling, struggling to cope with not now knowing what her actual diagnosis is, and most importantly not being able to cope away from the safety of the cancer ward. She felt so safe there, everything was done to a strict routined timetable, OBS, breakfast, bloods, washed, cup of tea, lunch, OBS, bloods, snack trolley, etc. The day was so organised.

I am trying to replicate that routine, but unfortunately just get snapped at. I tell her not to overdo things and politely get told not to be silly, yet I’m right when this morning she is in pain, from doing too much...

She normally enjoys Christmas so much, but this year it has passed her by, the worry before hospital and the 10 days leading up to it, have robbed her of that Christmas feeling this year, she is now just sitting, waiting for the call to say that Kings have made the “lead judge” decision and she can get on with her treatment.... roll on the NewYear!

One thing you will have to learn very quickly is to develop a thick skin. You will get sessions of being shouted out when you are at your most helpful but that is the way it is so focus through it. It hurts but you (and I) have to be strong to make sure that you have it covered. The balance between helping and treating her too protectively is a fine line which you will transgress many times but for most of the time the support will be greatly appreciated.

I read your update in the other post ,at least now you know what you are dealing with and they will come up with a plan not sure if that would be RChop as I think they use a different chemo for lump based Lymphoma.

Christmas is not the same for us, it is lower key this year (less time to worry about presents etc) but certainly more intense and a focus on important things i.e the family and fun. I know that is hard to do and might sound wrong under the circumstances.

All the best.

 

[darkwolf666]

One thing you will have to learn very quickly is to develop a thick skin. You will get sessions of being shouted out when you are at your most helpful but that is the way it is so focus through it. It hurts but you (and I) have to be strong to make sure that you have it covered. The balance between helping and treating her too protectively is a fine line which you will transgress many times but for most of the time the support will be greatly appreciated.

I read your update in the other post ,at least now you know what you are dealing with and they will come up with a plan not sure if that would be RChop as I think they use a different chemo for lump based Lymphoma.

Christmas is not the same for us, it is lower key this year (less time to worry about presents etc) but certainly more intense and a focus on important things i.e the family and fun. I know that is hard to do and might sound wrong under the circumstances.

All the best.

You my friend are a diamond. There have been some wonderful posts here from people who clearly care, and from those with personal experience, like you. Your posts always resonate with a deep understanding borne out of personal experience.

To quote Tiny Tim - God bless us everyone!

 

[zefarelly]

I had to break into my step dads house 3 years ago, he was virtually comatose in bad, had been for 3 days . . . . Pneumonia (on top of a degenerative MS/MN type illness) having got him an ambulance etc . . .the following day, in intensive care, he ****ing ranted like crazy at me, said horrible things. Off his trolley on assorted high quality medication which was keeping him alive.

I'm thick skinned, guessed I was actually making matters worse by being there, spoke to the Dr, and we agreed me going home was probably for the best. . . . . . The Dr put him into an induced coma for his own safety! A few days in ICU and he started to recover . . . . And doesn't remember any of it.

Cantankerous diamond is still here thankfully.

A lot of medicine has bizarre side effects, hopefully that raises a small smile and you will look back similarly one day. . . I'd pretty much forgotten about it until I just read a few more posts here. . . . Keep the faith.

 

[darkwolf666]

Manic Monday and Sun Comes up It's Tuesday Morning - Part Two

Well, after enjoying a quiet Christmas at home together, my wife got a call to go back into the hospital on Monday. King's have had a look at the biopsy, and the results of the Norwegian jury are in, let's just hope it's not nul points.

Previously my wife had two diagnosis, initially bowel cancer, then high grade lymphoma - now the new current diagnosis is low grade lymphoma.

Low grade says everyone, that's got to be good - well no, it transpires that on this occasion low is actually "high", or at least potentially bad.

The noises before Christmas were all about cure - "we can cure this they all said, the chemo might be a bit nasty, but we can cure you". Now, that has changed, now they are saying they can't cure, but they can treat - low grade follicular cancer, grade 2, stage 4 - apparently there is a 50% chance of surviving 10 years, wow, that's a real comfort.

My wife, not surprisingly is in bits again - it's been a ****ing rocky rollercoaster of a ride, which now appears to have hit the buffers - I tell her to be positive, that everything will be ok, but deep down I'm thinking "she's going to die" - maybe not now, maybe not this week, month or year, but she is living on borrowed time. What am I going to do without my soul mate.

We are second marriage, I feel like I wasted nearly 50 years of my life waiting to find her, now the meter is running, and I don't think I can pay the fare...

She keeps saying, "I think I will wake up one day, and find it was all a horrible dream" - I really wish she would!

 

[Motogull]

I really don't know what to say [MENTION=33649]darkwolf666[/MENTION] other than I'm really sorry the news isn't better and to reassure you we are all here for you.

 

[darkwolf666]

I really don't know what to say [MENTION=33649]darkwolf666[/MENTION] other than I'm really sorry the news isn't better and to reassure you we are all here for you.

Thank you, thank you all for your very kind words - I keep seeing the ads on TV "we're going to beat cancer", well ****ing hurry up!