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



Thunder Bolt

Silly old bat
I'm trying, I really am trying, but it's getting harder by the day.

I always try and put a light and cheery face on things, but I'm seriously struggling at the moment!

It's ok not to be ok. Ask family and friends for help, and don't feel you have to cope alone. Talk to the medical staff and get advice, maybe from Macmillan.
We're all behind you but we're only the Internet crowd.
 




darkwolf666

Well-known member
Nov 8, 2015
7,651
Sittingbourne, Kent
It's ok not to be ok. Ask family and friends for help, and don't feel you have to cope alone. Talk to the medical staff and get advice, maybe from Macmillan.
We're all behind you but we're only the Internet crowd.

You may be the IT crowd, but I feel like I can be truthful here. When the nurses and doctors and even the Chaplin (no not Charlie) come round and ask how I'm doing I always make light of things. They go away happy, because they have asked the question..
 




Thunder Bolt

Silly old bat
You may be the IT crowd, but I feel like I can be truthful here. When the nurses and doctors and even the Chaplin (no not Charlie) come round and ask how I'm doing I always make light of things. They go away happy, because they have asked the question..

They are waiting for you to say you need to talk, especially the chaplain. Nobody can force you to open up, but don't say you feel fine when you don't. It really does help to talk it out.
If you can't talk to the professionals then talk to somebody you trust, in the family or a friend. You may find they want to talk about it too.
 








darkwolf666

Well-known member
Nov 8, 2015
7,651
Sittingbourne, Kent
They are waiting for you to say you need to talk, especially the chaplain. Nobody can force you to open up, but don't say you feel fine when you don't. It really does help to talk it out.
If you can't talk to the professionals then talk to somebody you trust, in the family or a friend. You may find they want to talk about it too.

I need to talk, but how do I say that in front of my wife, when I’m supposed to be in charge of looking after the 3 kids and home.

I guess it feels like a sign of weakness on my part...
 


Thunder Bolt

Silly old bat
I need to talk, but how do I say that in front of my wife, when I’m supposed to be in charge of looking after the 3 kids and home.

I guess it feels like a sign of weakness on my part...

It isn't a sign of weakness. Your wife knows she can trust you with the children and your home, but you may think of things to ask that she is frightened to.
You are going through this battle together.
 




Weststander

Well-known member
Aug 25, 2011
69,252
Withdean area
I need to talk, but how do I say that in front of my wife, when I’m supposed to be in charge of looking after the 3 kids and home.

I guess it feels like a sign of weakness on my part...

Along with your thoughts on this thread, that shows you’re a good guy and family man, simply recognising your very human emotions.
 


Wardy's twin

Well-known member
Oct 21, 2014
8,866
I really don’t know, they haven’t really explained in any detail, or we haven’t understood - ammunition for me to ask for clarity though, thank you!

What I described is what my wife had at the Sussex , it seemed to be pretty standard, certainly for her type of Lymphoma. The steroids certainly 'cushioned' the effects in the first few days.

The Macmillan site explains a lot about the treatment. They work hand in hand with the NHS but are there to support patients and their families. There are helplines as well. Do they have a presence at the maidstone hospital.
 


darkwolf666

Well-known member
Nov 8, 2015
7,651
Sittingbourne, Kent
What I described is what my wife had at the Sussex , it seemed to be pretty standard, certainly for her type of Lymphoma. The steroids certainly 'cushioned' the effects in the first few days.

The Macmillan site explains a lot about the treatment. They work hand in hand with the NHS but are there to support patients and their families. There are helplines as well. Do they have a presence at the maidstone hospital.

Thanks once more for your input. Yes there is a Macmillan presence at Maidstone, though part of the problem, which I think I’ve mentioned, my wife isn’t an asker, she’s not noisy or loud, so for the most part I have to do the shouting for her.

I have found myself too frequently saying “we” when really it is my wife that is directly affected, but it is “we”, as we are a couple and as such it affects us both, just I haven’t got to go through the shitty stuff (though I would, without a moments hesitation).
 




Baldseagull

Well-known member
Jan 26, 2012
11,839
Crawley
You may be the IT crowd, but I feel like I can be truthful here. When the nurses and doctors and even the Chaplin (no not Charlie) come round and ask how I'm doing I always make light of things. They go away happy, because they have asked the question..

Get in touch with MacMillan, https://www.macmillan.org.uk/
 


cheshunt seagull

Well-known member
Jul 5, 2003
2,594
I am not sure what the treatment for Lymphoma will be but if its any help this is what I had for 6 cycles of Myeloma and it will probably be comparable in some ways. Chemo injection each Monday, 20mg of steroids on Monday and Tuesday and a smorgasbord of other drugs each day including, bizarrely, Thalidomide. I did this for six 4-week cycles. It sounds daunting but I found, and others felt the same , that once you had got into the routine it became familiar and much less scary. There is some comfort to be had from the routine and knowing you are in good hands. The biggest impact on behaviour and feelings were the steroids. From Mon-Wed I was like Vyvian, the punk, from the Young Ones and became Neil, the hippy, on Friday. All the very best and talking to MacMillan can be really helpful.
 


darkwolf666

Well-known member
Nov 8, 2015
7,651
Sittingbourne, Kent
Well, after spending the week in hospital, having myriad tests and being visited by countless number of doctors, my wife was scheduled to start her chemotherapy yesterday.

She had made good friends with a lady in the bed opposite, who was undergoing the same treatment. They had sat together while the consultant had talked them through the upcoming treatment, and had made a bond that it appears only cancer patients can make. I guess when you're all in the same boat it does polarise the mind. The lady in the bed opposite had held my wife's hand, while she cried as the consultant gave them all the gory details of their treatment! But they felt together...

I got a call from my wife yesterday morning, saying the junior doctor had asked if I was coming in, shortly after, one of the ward nurses had asked her the same question, "is your husband coming in this morning" - my wife is now panicking. "Why do they want to know if my husband is coming in"?

Her consultant comes round and sees my wife is clearly distressed - it now transpires that there is a conflict of opinion. The pathologists at The Royal Marsden had checked my wife's biopsy sample and said she has High Grade non-Hodgkinson Lymphoma, while now the pathologists at Maidstone are saying, no, it's a low grade Lymphoma. Her consultant won't treat her, as the diagnosis is unclear, and has now sent the original biopsy samples to Kings Hospital, for a third and definitive opinion.

This toss of the coin, will decide my wife's regime for chemotherapy! She is gutted, she was psyched up to start her chemo and now is in bits.

The lady in the bed opposite had her chemo, yesterday as planned, and this evening was discharged - my wife was distraught - not only was she losing a " good friend" she had made in a few days, but this should have been her, it should have been her walking out of the door, waiting the next 3 weeks for the next chemo appointment.

Instead, she is being discharged tomorrow, to await the result of the Kings pathologist report. Great news she will be home for Christmas, but not so good that we are back in limbo land - not knowing what exactly is going on.

I feel so sorry for my wife and others like her that are going through this shit every day!
 








Weststander

Well-known member
Aug 25, 2011
69,252
Withdean area
I do hope so. She (we) just want to get things moving. She knows it’s going to be a horrible path to travel, but hey, with me by her side what can go wrong!

The uncertainty at this time causes added anxiety. In my experience (far less than your wife’s situation), the medics and modern knowledge is amazing, albeit with some NHS chaotic admin and communication at times.

Did you manage to find emotional support for yourself yet?
 


darkwolf666

Well-known member
Nov 8, 2015
7,651
Sittingbourne, Kent
The uncertainty at this time causes added anxiety. In my experience (far less than your wife’s situation), the medics and modern knowledge is amazing, albeit with some NHS chaotic admin and communication at times.

Did you manage to find emotional support for yourself yet?

Aside from these illustrious boards, no I haven’t reached out to anyone yet. I have been handed a card by my wife’s councillor for Macmillan, but wouldn’t even know how to make that conversation, or for that matter if I even want to...
 




Wardy's twin

Well-known member
Oct 21, 2014
8,866
Well, after spending the week in hospital, having myriad tests and being visited by countless number of doctors, my wife was scheduled to start her chemotherapy yesterday.

She had made good friends with a lady in the bed opposite, who was undergoing the same treatment. They had sat together while the consultant had talked them through the upcoming treatment, and had made a bond that it appears only cancer patients can make. I guess when you're all in the same boat it does polarise the mind. The lady in the bed opposite had held my wife's hand, while she cried as the consultant gave them all the gory details of their treatment! But they felt together...

I got a call from my wife yesterday morning, saying the junior doctor had asked if I was coming in, shortly after, one of the ward nurses had asked her the same question, "is your husband coming in this morning" - my wife is now panicking. "Why do they want to know if my husband is coming in"?

Her consultant comes round and sees my wife is clearly distressed - it now transpires that there is a conflict of opinion. The pathologists at The Royal Marsden had checked my wife's biopsy sample and said she has High Grade non-Hodgkinson Lymphoma, while now the pathologists at Maidstone are saying, no, it's a low grade Lymphoma. Her consultant won't treat her, as the diagnosis is unclear, and has now sent the original biopsy samples to Kings Hospital, for a third and definitive opinion.

This toss of the coin, will decide my wife's regime for chemotherapy! She is gutted, she was psyched up to start her chemo and now is in bits.

The lady in the bed opposite had her chemo, yesterday as planned, and this evening was discharged - my wife was distraught - not only was she losing a " good friend" she had made in a few days, but this should have been her, it should have been her walking out of the door, waiting the next 3 weeks for the next chemo appointment.

Instead, she is being discharged tomorrow, to await the result of the Kings pathologist report. Great news she will be home for Christmas, but not so good that we are back in limbo land - not knowing what exactly is going on.

I feel so sorry for my wife and others like her that are going through this shit every day!

I can only go from my wife's experiences and my reading on the subject but a few things

a) Has she had a PET scan where radioactive liquid is injected into blood stream and then used to produce detailed images of the body. They often use these at the end of a chemo cycle to determine if it has worked. These are better than CT scan or MRI scans but can be done at beginning to measure the spread of the disease.
b) It is possible that a person develops both Low grade Lymphoma (slow often a lump) and High (very fast growing other associated with blood cells) at same time.
c) low grade is often treated more passively (watch & wait) , high grade usually needs urgent treatment because it is fast growing
d) biopsies are usually quite definitive but given that both conditions could be present then they might need to biopsy more
e) from what i have read if a person has both conditions they treat it as high grade

have they actually defined the staging of the cancer?
 


darkwolf666

Well-known member
Nov 8, 2015
7,651
Sittingbourne, Kent
I can only go from my wife's experiences and my reading on the subject but a few things

a) Has she had a PET scan where radioactive liquid is injected into blood stream and then used to produce detailed images of the body. They often use these at the end of a chemo cycle to determine if it has worked. These are better than CT scan or MRI scans but can be done at beginning to measure the spread of the disease.
b) It is possible that a person develops both Low grade Lymphoma (slow often a lump) and High (very fast growing other associated with blood cells) at same time.
c) low grade is often treated more passively (watch & wait) , high grade usually needs urgent treatment because it is fast growing
d) biopsies are usually quite definitive but given that both conditions could be present then they might need to biopsy more
e) from what i have read if a person has both conditions they treat it as high grade

have they actually defined the staging of the cancer?

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.
 


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