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Waiting for results

FionainScotland
Posts: 14
Joined: Jan 2012

Hello, I am writing this for my Mum Fiona. She is 65. I am 36yr old daughter. She is my advisor, my go-to when I am unwell, or have to 'chat' about life/men/jobs. I work aborad a lot. But I can't leave her now. She has raised 3 children as well as looking after a husband and cooking 3 course meals for 35 years (and going out to work too). I do not know what I would do without her. Her Mum, my grandmother, just died last year, aged 93. My Mum looked after her for 10 years. My grandfather (her father) was 90 when he died. My Mum has good genes if she has theirs, but she has absorbed so much stress in life, and never 'lets off steam' or puts herself first. Her health was always last. And she has had no treats or being taken proper care of by her husband who always came first and was always about to have a heart attack - despite good health (nothing wrong with him for 40 years, but he went to hospital with heartburn for 4 days).

It is so helpful to read others who have had experiences which suddenly have exploded into our lives. There is never a good time, but this Christmas was awful, my mum had fallen out with her husband badly.

She is in hospital in Scotland waiting for results from a biopsy (which was of her peritoneum). I think my Mum had the 'vague' symptoms for some time. Way back in May 2011 (it's now Jan 2012) we were in Spain and she had a very sore abdomen and bad constipation or diarrhoea. She even went to the Dr there, as a tourist, and the Dr did an ultrasound. She prescribed vitamins and said it was an infection, charged lots and packed her on her way (she was due home in 1 day). But now Mum has said the Dr looked her in the eyes as she did the ultrasound. She visited her GP when she got back, and this again is rare for her. She is an avoider (maybe as she smoked almost 40 years - stress she says) and has to be at point of collapse to go to Dr. Her GP didn't do much.

Then we get to this December. She cooked a turkey for her husband, even though she felt sick. I could see she was looking so unwell. Then she started to be sick early in morning, waking to do so even though she had almost empty stomach. Her abdomen is very swollen. The GP sent her to hospital, I took her in my car. It was just 3 days after Christmas. Outside the hospital she said 'I think I feel better, let's go back'. Then, after struggling to walk to the ward, she collapsed when they took blood from her. I had to sit and wait, mind racing. They did a Ct to rule out an emergency anuerism. It was not this, but there was a large 'mass' pressing on her aorta. She was admitted and given a single room where she finally got a bit of rest (from stress at home and being sick and then worrying about cleaning up etc).

Next day they did the biopsy under the scan at same time. Involved a long wait and then recovery lying flat. Back to her room...I was told they would not send her home inbetween the waiting for results/results and any possible operation. But then they changed their minds and suddenly they said she might come home today!!(she doesn't want to as she had stress with her husband and they were not even speaking when I took her to hospital, now he is insisting on visiting her and she doesn't want to see him, partly I think what made her so ill). I have spoken to about 5 nurses (never her Dr who never seems to be there when I ask) and explained that she is too ill (clearly - even just her palour is so awful, and she can hardly move and can't get comfortable). They moved her onto a ward even though she having diarrhoea, and today while I was there she had to ask for pain relief (again, she would not do this unless it was severe). They gave codeine but no difference, and so she finally got morphine. She has lost a lot of weight as she cannot eat much at all, and yet not on a drip or anything. She does not like the ward as she is now far from the toilet, and in her private room she was not making it on time, and then having showers in middle of night.

I have been in each day, but visiting is only an hour at a time, and doesn't seem long enough. I'm scared as my Mum's abdomen looks so big and swollen (but her cheeks sunken) and she is in so much pain. She looks pale and frail. They have said results might be 2 weeks. My goodness that seems wrong, as does moving her onto ward, as does any talk of sending her out (the nurse agreed today and said no, she is not well enough). It's a brand new hospital btw!!

If anyone can describe how their diagnosis went, or if this sounds a normal experience, it would be so helpful. I know most of it will be different as this is an Amercian site, but that is also a good comparison, as I have (worryingly) read that they might be less likely to wish to operate or explore all such options here in UK. I hope to show my Mum this site soon (but not sure I want to show her the name of the cancer which I am worried it might be, I think she is still ignoring what they said about the biopsy location). I am poring over the site and any others to get hope which I will pass on, people who survived, people who lived through the chemo and radiotherapy and even some who mention many years. I am not married, no kids. I never thought my Mum would miss it all. She deserves to enjoy her retirement, which she has hardly started. She deserves to travel and relax and be pampered.

I am not religious, but I pray anyway, and I will water my Rose of Jericho and pray that the same burst of life is infused back into my Mum. I had to tell my brother (33) a bit more today, as it was clear he was assuming all fine. I've never seen him cry and he just broke down and wept. I had to say 'it might be fine, there might be lots they can do, even if it is PPC or another 'bad' diagnosis'.

I am not religious, but I pray anyway, and I will water my Rose of Jericho and pray that the same burst of life is infused back into my Mum.
Gailxx

stella65
Posts: 150
Joined: Feb 2011

OMG I was wondering as I read your story which country you were living in and feeling grateful for being in the UK, then I read you ARE in the UK!! Where do you live? We are in the south ( New forest) Mum has pretty much had very good care, she was diagnosed after having severe pain in her tummy ( this has always said not to be cancer related but they can't find another cause) It was during a scan for this pain that they found the cancer.... Then it was straight in for an operation and immediately after she started chemo, you can read about some of her journey on this forum if you think it would help, in my opinion your mum is not getting good care and you need to shout on her behalf, please keep us updated......... Much love to you and your mum X Sue

FionainScotland
Posts: 14
Joined: Jan 2012

I will go in and see her again today. But first I am going to call to see if i can also speak to her Dr (and they have yet to give me one name of who it is or at least a person who is in charge while we 'wait' to see which member of the team she will see - what they told her was they don't know yet who she will be 'called back in' to see, imho that is if she gets out - she looks so unwell). I want to request she has a private room, with at leat a toilet ensuite so that worry is lessened for her (trying to get quickly across ward and worried as it is a shared toilet). I don't want to make her thought of as a difficult patient, but to be honest the Dr who I have seen so far doing his rounds has so far been very poor. Mum says he has not looked her in the eyes (so he certainly has not been near her or examined her) and he just hovers by door and is halfway out while the nurse looks up Mum's notes.

We are in Scotland, a new hospital (I won't name it yet, in case Mum kills me). She thinks the NHS is wonderful, but I have feeling of no continuity, overworked nurses and Drs who were in a rush to get home (esp during Xmas). I have a cold today and need to be so careful when in seeing her, as last thing she could take is any infection. I'm just wondering Sue, did your Mum have a biopsy before the operation (I intend to read all her story later today and thanks so much for your reply. It is a horrible time just now and it is amazing just to be able to read a few words from someone with similar experiences). I texted her this morn to ask how pain was, she said not so bad so far today, maybe the morphine helped last night xx

stella65
Posts: 150
Joined: Feb 2011

Hi again, yes mum had a biopsy and a laparoscopy (sp?) she also had another biopsy when she had her op, you are right it is a very horrible time, I just to try to take it one day at a time, I hope you can at the least see your mum more comfortable soon as it is so horrible to see them so poorly and then push push and push again to get her the treatment she deserves, we are all here for you X

FionainScotland
Posts: 14
Joined: Jan 2012

Hi Sue, thanks so much for your replies. I am just about to go in and see her for evening visiting. I expect she will ask for morphine again this evening. I am wondering if Mum should ask to see her CT scans (and if they let you). Again, don't want her Dr to feel she is annoying, but if it was me I would probably wish to know all. She likes to know, and makes notes of all her symptoms...makes her feel a bit in control at least. I will keep this updated, I can talk to friends but unless someone has direct experience it is hard and I don't want to burden people with worries. Your Mum seems to have had very quick treatment, and I know my Mum is actually hoping for surgery, as I know she will think the worst if they say they don't want to operate.
Thanks Gxx

FionainScotland
Posts: 14
Joined: Jan 2012

Hi Sue, thanks so much for your replies. I am just about to go in and see her for evening visiting. I expect she will ask for morphine again this evening. I am wondering if Mum should ask to see her CT scans (and if they let you). Again, don't want her Dr to feel she is annoying, but if it was me I would probably wish to know all. She likes to know, and makes notes of all her symptoms...makes her feel a bit in control at least. I will keep this updated, I can talk to friends but unless someone has direct experience it is hard and I don't want to burden people with worries. Your Mum seems to have had very quick treatment, and I know my Mum is actually hoping for surgery, as I know she will think the worst if they say they don't want to operate.
Thanks Gxx

Carolyn68
Posts: 39
Joined: Aug 2011

Gail, I am so sorry that you have to encounter this poor care. I am sure here in the US she would have had immediate attention and care. I knew on a Tuesday they thought I had cancer from they thought a bladder infection and pain on my right side. CT was done, and surgery 4 days later. They removed my tumor and took it to pathology right away. I knew when I woke up 4 hours later, that I had PPC cancer. Then, things rolled from there....I knew I was to have chemo...and two weeks later a port was place and chemo the next day. Even with the excellent care I received...we still demanded answers. Your situation seems so passive....are there other hospitals around, onc? or cancer clinics....you definitely need a second opinion. You can live with this chronic disease, but seems chemo is your answer and definitely surgery. I pray for all your doctos and nurses.....and you and your Mom!
This can be alot of stress for everyone...and the clock is ticking withoout results...it should not take 2 weeks for a biopsy result, especially since you Mom is already so ill.
You need to get aggressive....good luck, and yes, I do believe in prayer...and I will pray for your Mom!...and you and your brother.

FionainScotland
Posts: 14
Joined: Jan 2012

Thank you so much Carolyn.

Ok, so it's all a bit of a blur, but I am fairly sure it was the 28th December I took her in. It is now the 8th of January and still no results (and they said not this weekend). I have no idea why this would be. New hospital, the pathology lab is in the hospital. I am beginning to think almost of conspiracy theories. How can they leave someone waiting like that??

She is actually unwell, IN the hospital and showing all signs of being unwell, not like she is an outpatient who is well and waiting for results. So far various Drs have said words like tumour, chemo, radiotherapy and surgery or maybe not. All without even a result. When I said to one of the nurses she was clearly too unwell to go home and wait, and that we waited for a biopsy with much worry and chance it might be cancer, she said 'yes in all likelihood it is'.

Worst part is my Mum praises the NHS so much, but it is easy to see how it falls down. It's an (sometimes very, disastrously) imperfect system for all, rather than a perfect system for a some. But right now, I'd rather have the chance to pay whatever and have better continuity (always a new nurse and she still doesn't know which Dr assigned to her if any, as they say they wait for results before that). It scares me so much. what if this represents how seriously they take her care and how hard they will work for her to be better?

Going by what I've seen so far, I wish she could go somewhere else, for instance the one Sue mentioned above. But She is stuck there and I know would be completely stressed by any move, plus the accommodation and moving away would be impossible.

She wanted an op asap, and now she thinks they may not be wanting or planning to operate at all. It is pressing on her small bowel as it is (she says they said that from the scan - as well as pushing her aorta to the side), and that is probably what causing the toilet probs and some pain too.

I want to start trying to help, and of course pray it is (by a miracle) something benign, but if not, I want to read how to help, and read about survivors and try to gather as much hope for her as possible. I don't know how she stays so calm, when she knows she is unwell and these days surely might be important.

Thank you so much for your replies, I will keep coming back here. Really praying for my Mum, for the other Moms/women/families on here and really find it informative and comforting to not feel so alone.
Gx

Lovingmymom's picture
Lovingmymom
Posts: 44
Joined: Nov 2011

Gail,
I am following your story closely and thinking of you often. My mom began her cancer journey a few short weeks ago. We started chemotherapy yesterday an I am relieved to report that she is doing great!!! No side effects whatsoever,

I want you to come to new York with your mom and stay at our home. I want to find a cure for this horrible disease as well. I am frustrated for you as i have been in your shoes and know your frustration. My mom was once hospitalized and I had everything I could do to hold it together while I was being given the run around. That was at our local hospital. We are now seeking treatment at one of New York's best and have an excellent team of Dr's.

Stay focused and remain her advocate. Your mom is dealing with many of her own emotions and will not retain the information the Dr's and Nurses relay to her. Get your family and friends on "Team Fiona" as there is strength in numbers. Take it one day at a time.

I too cannot imagine life without my mom. She has always been my right hand, my first phone call to find advice on everything from boys, bad bosses, what colors match with what and how to cook a turkey. We are all here for you - stay strong.

Xoxo
J-

FionainScotland
Posts: 14
Joined: Jan 2012

9th January, she had the biopsy on 29th December. Fully 10 days later, and the results came back 'inconclusive' this evening.

She has to have more biopsies (plural?) tomorrow, say they will take more tissue this time. She didn't enjoy the first one at all, and was in quite a lot of pain afterwards, plus bad diarrhoea etc.

The fact it came back inconclusive makes the wait even more pointless and wrong. Each day I am going once or twice to the hospital 40 mins drive each way, flooding, winter and storms. Thought one night I was there it was like a bad film, it literally couldn't have been worse, there were trees down everywhere and Mum was lying in hospital. And now another biopsy (she orginally said 'just please operate, I don't mind that'!) My Aunt (Mum's sister) has been out a few times which has been good, but they live quite far away.

I tried to keep her pepped up after last biopsy, sat for 3 hours as she was waiting in a backlog (the radiology dept running 3 hours behind as it was very busy over Christmas) and then in recovery. She will be dreading tomorrow now, and I feel so sorry for her, and also annoyed at the waiting which has been for nothing. Wondering how much tissue they need this time, since the last biopsy was done guided by CT scan with dye.

This post has nothing good in it, but can't see any just now...:-(
Gxx

FionainScotland
Posts: 14
Joined: Jan 2012

9th January, she had the biopsy on 29th December. Fully 10 days later, and the results came back 'inconclusive' this evening.

She has to have more biopsies (plural?) tomorrow, say they will take more tissue this time. She didn't enjoy the first one at all, and was in quite a lot of pain afterwards, plus bad diarrhoea etc.

The fact it came back inconclusive makes the wait even more pointless and wrong. Each day I am going once or twice to the hospital 40 mins drive each way, flooding, winter and storms. Thought one night I was there it was like a bad film, it literally couldn't have been worse, there were trees down everywhere and Mum was lying in hospital. And now another biopsy (she orginally said 'just please operate, I don't mind that'!) My Aunt (Mum's sister) has been out a few times which has been good, but they live quite far away.

I tried to keep her pepped up after last biopsy, sat for 3 hours as she was waiting in a backlog (the radiology dept running 3 hours behind as it was very busy over Christmas) and then in recovery. She will be dreading tomorrow now, and I feel so sorry for her, and also annoyed at the waiting which has been for nothing. Wondering how much tissue they need this time, since the last biopsy was done guided by CT scan with dye.

This post has nothing good in it, but can't see any just now...:-(
Gxx

stella65
Posts: 150
Joined: Feb 2011

I cannot believe what I am reading, how dare you be treated like this, I am so angry and upset for you, what are they playing at in that hospital!! I don't know what to say to you, I just hope things improve for your mum very soon, you are both very much in my thoughts X

FionainScotland
Posts: 14
Joined: Jan 2012

So, a further 5 days or so? She had a further 3 biopsies (she hated it, it is not nice) on Tuesday 10 January. Then she was discharged on Thursday 12 January. Today it's Sat 14th. She was not well enough to be discharged. She needed a wheelchair to my car. She was told these results would be quicker, but up to a WEEK. That will make it about 20 days since she first went in (and that is if the resulots come by this Weds).

However...she has no appetite and today she called me into the lounge to say 'I am not well at all, whatever it is I don't have long, it's clearly serious'. She feels nauseous and lightheaded. She looks grey and has black circles under her eyes. She asked for a sick bowl but when I said I needed ot call the hospital, she says 'what can they do?'

My brother and I spent about an hour 'debating' with her (and trying to ourselves stay calm) that we need to say to the hospital that she needs her results. I said to her 'Mum, there are treatments, you you might feel much much better after one round of chemotherapy or surgery'. But she just shrugged and said 'yeah, chemo', all implying she bwlieves she is 'not well at all'. she of course did not communicate this to the Drs, or say 'no, I insist'. She should have argued her case (she does not want me to, it ios killing me and I even had to tell her today it is a bit selfish, I feel bad for sayng such things but she must know how painful this is for otehrs - I mean I can already guess we will have to call an ambulance or, as she will insist, I will have ot take her back in if she starts to have severe sickness or diarrhoea again).

We got her 'agreement'..almost, thay I could call the hospital. The Dr in charge of her case so far is not on at weekends, but there is another one who has seen her on one of his rounds (he is only about 22 and a very, very young one at that, appears more like 16, and I don't say this is necessarily a bad thing, but I did find he came across as inexperienced and not seeing the big picture. He said with a big smile he'd call pathology agina, and last thing they wanted was her to come back in if they discharged her...but the call made no diofference, we still waited, and yes, she was discharged). I called 7 hours ago, and they said he would call back, but he didn't. So I called again, and again he was not around, so they said he call back (but that if he didn't, I am free to call back in a few hours). I explained all (again, again) to a nurse who knew nothing. I said 'please, she needs a diagnosis, if anything for some hope. She has waited already so long.

Her husband (my dad) has moved into the house next door which they also own and where my grandparents used to stay(and they are still not speaking which is understandable - longer story not for now). It is a dire situation, and my energy is so low but I'm trying to do what I can (just the washing, tidying the things she tells me, she tried to look through some paperwork too today, trying to get some affairs in order).

I think I will just say to the very young and not in charge of her case Dr that he might think I am exaggerating as a caring relative, but that I believe my Mum is not going to be around much longer. Does the hospital really want that to be the case without her even having a diagnosis?

Is that unfair of me, is this all weird or 'just what can happen' (which is what the hospital says - that 'yeah, it can take up to 2 weeks, nod nod'. And 'yes, in all likelihood it's cancer'. I think WE KNOW it's a cancer, but please, can she have some treatment, please???

Normally, she would be beginning a divorce, but she can't, and has no energy. He is next door and might ask to come back to get stuff. I would hate that, as would my brother.

As the day went on, her nausea receded, and when I was trying to tell her that there are many treatmeents and years survived for many people, she talked about whether she might get other opinions (when and if she ever gets a result/diagnosis). I said yes, of course, this is the thing to do.

Just awful waiting.

FionainScotland
Posts: 14
Joined: Jan 2012

So, a further 5 days or so? She had a further 3 biopsies (she hated it, it is not nice) on Tuesday 10 January. Then she was discharged on Thursday 12 January. Today it's Sat 14th. She was not well enough to be discharged. She needed a wheelchair to my car. She was told these results would be quicker, but up to a WEEK. That will make it about 20 days since she first went in (and that is if the resulots come by this Weds).

However...she has no appetite and today she called me into the lounge to say 'I am not well at all, whatever it is I don't have long, it's clearly serious'. She feels nauseous and lightheaded. She looks grey and has black circles under her eyes. She asked for a sick bowl but when I said I needed ot call the hospital, she says 'what can they do?'

My brother and I spent about an hour 'debating' with her (and trying to ourselves stay calm) that we need to say to the hospital that she needs her results. I said to her 'Mum, there are treatments, you you might feel much much better after one round of chemotherapy or surgery'. But she just shrugged and said 'yeah, chemo', all implying she bwlieves she is 'not well at all'. she of course did not communicate this to the Drs, or say 'no, I insist'. She should have argued her case (she does not want me to, it ios killing me and I even had to tell her today it is a bit selfish, I feel bad for sayng such things but she must know how painful this is for otehrs - I mean I can already guess we will have to call an ambulance or, as she will insist, I will have ot take her back in if she starts to have severe sickness or diarrhoea again).

We got her 'agreement'..almost, thay I could call the hospital. The Dr in charge of her case so far is not on at weekends, but there is another one who has seen her on one of his rounds (he is only about 22 and a very, very young one at that, appears more like 16, and I don't say this is necessarily a bad thing, but I did find he came across as inexperienced and not seeing the big picture. He said with a big smile he'd call pathology agina, and last thing they wanted was her to come back in if they discharged her...but the call made no diofference, we still waited, and yes, she was discharged). I called 7 hours ago, and they said he would call back, but he didn't. So I called again, and again he was not around, so they said he call back (but that if he didn't, I am free to call back in a few hours). I explained all (again, again) to a nurse who knew nothing. I said 'please, she needs a diagnosis, if anything for some hope. She has waited already so long.

Her husband (my dad) has moved into the house next door which they also own and where my grandparents used to stay(and they are still not speaking which is understandable - longer story not for now). It is a dire situation, and my energy is so low but I'm trying to do what I can (just the washing, tidying the things she tells me, she tried to look through some paperwork too today, trying to get some affairs in order).

I think I will just say to the very young and not in charge of her case Dr that he might think I am exaggerating as a caring relative, but that I believe my Mum is not going to be around much longer. Does the hospital really want that to be the case without her even having a diagnosis?

Is that unfair of me, is this all weird or 'just what can happen' (which is what the hospital says - that 'yeah, it can take up to 2 weeks, nod nod'. And 'yes, in all likelihood it's cancer'. I think WE KNOW it's a cancer, but please, can she have some treatment, please???

Normally, she would be beginning a divorce, but she can't, and has no energy. He is next door and might ask to come back to get stuff. I would hate that, as would my brother.

As the day went on, her nausea receded, and when I was trying to tell her that there are many treatmeents and years survived for many people, she talked about whether she might get other opinions (when and if she ever gets a result/diagnosis). I said yes, of course, this is the thing to do.

Just awful waiting.

stella65
Posts: 150
Joined: Feb 2011

I just don't know what to say to you, I feel so angry and very upset for you and your mum, You must feel like screaming at the Dr's All I can do is send positive healing thoughts to you all and let you know that although my mum is being better cared for I understand your fears and how scared you must be, Lots and lots of love to you and your mum X

FionainScotland
Posts: 14
Joined: Jan 2012

The Dr at the hospital never called back. I called twice, once at 2pm and later at about 6pm.

Yeah, I feel like screaming at them :-o :-0 , but I don't even know which ones to direct such frustration at (never even met the supposed one in charge). I said to my Mum, I have had more awkward and probing and demanding questions asked to me as a high school teacher than we are asking of the Drs. I honestly need to speak to them alone and be assertive as I learned to be, had to be, when dealing with so many parents and hundreds of teenagers a day.

One of the nurses suggested NHS 24 (for anti-nausea medicine, this nausea was the main problem this morning and lightheadedness) and so I called, and also passed the phone to Mum. The lady nurse there was very helpful but she said she wanted a Dr to come and look over my Mum and that he or she would be able then to leave nausea meds. Well, I said 'my Mum won't want a fuss made, she is wondering if I can go and collect anything from the hospital' but the nurse said that there are plenty of Drs on call for all hours for just this purpose. Anyway, we agreed a Dr would call back and speak to Mum. After an hour or so one did but he was very brief and did not wish to come out at all ;-0 and said that he would arrange for anti-nausea medicines to be left at the A and E of the local hospital. So, at 9pm this eve, I was to go in. But...got to the bottom of the road and (it's Scotland...;-) freezing blanket fog and can't see a thing, no further ahead than one white line on the road. Called Mum and explained, she said come back. Took 15 mins to find a turning point. I could have made it eventually, at 20mph, but frankly it would turn into a full disaster if I break down or get stuck. So, guess I go first thing tomorrow instead, fog or no fog.

I hope tomorrow is a better day. So far, there's no reason to hope that the results would be ready by Monday, going by what we've experienced so far. I am going to call the hospital again tomorrow. I know the results won't be there, or the Dr in charge of her case, but I will also call on Monday. I will be explicit on Monday, if the results are not ready. If she is not urgent, what is?

My Mum has empty records, the nurse was even surprised at the hospital. She never goes for tests or checks. It's commendable to be self-sufficient and to not use resources, but to be ill for long, or have symptoms and still now be reluctant to 'admit' or ask for anything better, it's very, very hard, for us to see and to help.

Selfishly, I need my Mum here for a while longer yet. I am trying to conserve energy for what I hoped would be a 'fight' and a process which involved treatment. I need her to be on board and to fight to stay here. She even said if these results were inconclusive she would not get any more biopsies (I can only pray this is said as an exaggerated response - it sounds an awful procedure but she must surely have a diagnosis). Thank you so much Sue for all your replies, in fact, this board is the only place that I can 'speak to', crazy as it sounds. So far, she has not wanted to tell any of her friends (partly due to the sudden situation with her husband which any joint friends will be surprised about and will probably ask questions which right now she has no energy to answer). Luckily she has a good relation with her sister, so at least my Aunt knows.

Still reading all the other posts on here, and happy to see the positivity of many and all the stories of successful remissions. And I'm now thinking each day of all those going through similar battles. xx

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Can I ask have they done a CA125 test on your mum? it was the first test they did my mum, she then had a ct scan within the week, and started chemo the week after,I cannot fault the care the NHS gave her, I live near Lowestoft Suffolk. Keep pressuring them , don't let them fob you off.Best of luck to you and your mum ,Liz xxxx

FionainScotland
Posts: 14
Joined: Jan 2012

She is is bed right now, but I'll ask her tomorrow, and also hopefully the Drs. I am not sure what this test is or means, but see it in a lot of the discussion here. I'll go and google it now.

Finally got her anti-nausea medicine (Domipidone or something...sp?), collected from local hospital. She is going to get the GP to come out tomorrow and see her to get mor eof her other medicines (morphine tabs and syrup, ibuprofen etc etc). I want to call hospital in morning too, to speak to the Dr in charge and say she needs her results. Fingers crossed these are ready, finally, and whatever it is, they give her some hope, so far, they not giving her anything to look forward to, no rousing speeches about 'well, we have treatements for most things these days, and whatever it is, we will try to help...'. No reassurance at all, nor to any of her family. Just told 'yes, it's likely cancer'.

Fingers and toes crossed. Just want her to feel a bit better soon.

Thanks for reading and replying Liz, you are very kind.

Lovingmymom's picture
Lovingmymom
Posts: 44
Joined: Nov 2011

Toes and fingers crossed here in NY for you. Soooooo frustrated for you! Hug mom give her comfort ( and for you too!) tomorrow is another day.
Be well. Prayers for you all tonight.
Jessica-

stella65
Posts: 150
Joined: Feb 2011

How are things sweetheart X

FionainScotland
Posts: 14
Joined: Jan 2012

I've been so snowed under, thank you for your good wishes, they mean a great deal.
So...Mum had been told the second biopsy results would 'only' be a week, but of course, delayed...

She got sent a discharge note from the hospital which mentioned the poossibiulities (the first time Mum had heard these (but then she probably did not ask clearly enough, as is her way, v different from mine). This said the mass (which is 20 x 8 x 10 or so) and CT were consistant with lymphoma but within the differential were 'desmoid tumour', carcinoid mass( or something carcinoid I forget), mesothe...something, and one other thing which is realted to lots of fibrous tissues bundled together. They had been hinting at lymphoma a few times in the hospital. So, we still had to wait for pathology.

She called on Weds, but nothing. Then this morning a call to go to hospital. Me, Mum, brother went to get results. Went in with young female Dr who had not dealt with Mum before, and she said 'it's not good news or what we had been hoping for'. She said teh biopsies showed evidence of lymphoma. I asked if it was 'lymphoma of the abdominal lymph nodes' and she said yes, but she called it a slightly different name. As I worte before, the first biopsy was inconclusive, and she says out of the next 3, one came back negative which is quite unusual, though not impossible. She says the tissues have therefore been sent to another lab, and these reults are not back yet.

We aksed lots of questions, and I had my notebook. Would they operate? No. Can it be removed/cured? No. Would she have chemo ? Yes (and has appointment at oncology this Monday). DO they know any causes? No...mainly it is Hodgkins which has a more genetic link, but non-Hodgekins doesn't (I think, this is just from memory, not my notebook). I had no idea that lymphoma could not be 'cured', and the Dr said children ar eth ones who do have more chance of cure.

So, they said they biopsied the peritroneum, but it seems like it is not that cancer, but lymphoma (and I still live against all logic and hope this other lab say 'no, it;s juts a Desmoid tumour'.

I just have to nip to drs now but will write more soon. Mum is sleeping upstairs, it;s been a lot ot take in today.

Thanks for all yoru thoughts, and I am thinking of all those who post here too. I really find this site invaluable.
Gxx

FionainScotland
Posts: 14
Joined: Jan 2012

I've been so snowed under, thank you for your good wishes, they mean a great deal.
So...Mum had been told the second biopsy results would 'only' be a week, but of course, delayed...

She got sent a discharge note from the hospital which mentioned the poossibiulities (the first time Mum had heard these (but then she probably did not ask clearly enough, as is her way, v different from mine). This said the mass (which is 20 x 8 x 10 or so) and CT were consistant with lymphoma but within the differential were 'desmoid tumour', carcinoid mass( or something carcinoid I forget), mesothe...something, and one other thing which is realted to lots of fibrous tissues bundled together. They had been hinting at lymphoma a few times in the hospital. So, we still had to wait for pathology.

She called on Weds, but nothing. Then this morning a call to go to hospital. Me, Mum, brother went to get results. Went in with young female Dr who had not dealt with Mum before, and she said 'it's not good news or what we had been hoping for'. She said teh biopsies showed evidence of lymphoma. I asked if it was 'lymphoma of the abdominal lymph nodes' and she said yes, but she called it a slightly different name. As I worte before, the first biopsy was inconclusive, and she says out of the next 3, one came back negative which is quite unusual, though not impossible. She says the tissues have therefore been sent to another lab, and these reults are not back yet.

We aksed lots of questions, and I had my notebook. Would they operate? No. Can it be removed/cured? No. Would she have chemo ? Yes (and has appointment at oncology this Monday). DO they know any causes? No...mainly it is Hodgkins which has a more genetic link, but non-Hodgekins doesn't (I think, this is just from memory, not my notebook). I had no idea that lymphoma could not be 'cured', and the Dr said children ar eth ones who do have more chance of cure.

So, they said they biopsied the peritroneum, but it seems like it is not that cancer, but lymphoma (and I still live against all logic and hope this other lab say 'no, it;s juts a Desmoid tumour'.

I just have to nip to drs now but will write more soon. Mum is sleeping upstairs, it;s been a lot ot take in today.

Thanks for all yoru thoughts, and I am thinking of all those who post here too. I really find this site invaluable.
Gxx

FionainScotland
Posts: 14
Joined: Jan 2012

Looked up what the Dr said, she said it was 'follicular lymphoma'. We didn't talmk a great deal about prognosis as the Dr didn't know much herself, and Mum will find out more at oncology. But all I can see re follicular lymphoma is that while incurable and with high recurrance, the survivial and prognosis is so much better than it might have been. Over 3/4 I think get to 10 years, and I even read one with 25 years. There are a few things ot consider, age (over 60) and general health (not good, lifetime smoker), but it might be considered by some people as a chronic condition, just as some on this board like to regard PPC.

Maybe that is all optomistic, her tumour is large and compressing on organs, however, I think we are not to read much into the size, it is the malignancy and this gives hope, especially as one bioopsy was even negative.

I will update this thread next week after Mum has been for her first oncology appointment, but I think it will be the case that I will be 'moving' home to the lymphoma section (and there are so many different lymphomas there is not a great deal on follicular, though there is plenty on the web as it's not uncommon for non-hodgekin's lymphoma types.

In the meantime, (I hope to be back next week to update), I'm almost sighing a big sigh of relief, even though Mum has cancer (which seems odd, but I hope you can understand my meaning). Thank you so much to Sue (stella65), Jessica (lovingmyMom), Liz (MumtoBellaandWilliam) and Carolyn68. It was not just this illness which came into our lives at Christmas, but a whole load of other stresses and problems. I can say probably this is really a crossroad moment in so many ways, and the next weeks and months the other things, not health related, may even get worse before they get any better. I am trying to see some hope, and clinging to it desperately. Your replies meant so much to me, and I thank you frmo the bottom of my heart, I even wrote to the forum while sitting waiting in the hospital. I felt warmth from your replies, and I felt as if someone cared, and even though you never met me, you sent that warmth, from far afield. I wish I could give eahc of you a hug just now, and so I am sending you one (( )) (is that how it goes??). Thank you so much.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Hi ,

I am glad you are getting somewhere with your mums diagnosis , it is unbearable waiting , I remember it myself.
I also am pleased that it sounds a little more treatable than PPC, hopefully they can keep it at bay for Many years to come. I can always remember saying to mum trust you to get a really rare one! I can also remember saying to people no cancer is good to have but mum has a particularly nasty one, so I get what you are saying.
Replying was a pleasure, I too remember those first few months of utter panic and desperation, it will get easier I promise, you learn to go with the flow, you cannot change what has happened and you have to make the best of a bad situation ,you are in a really good place coming on these boards.
God bless you and your mum, good luck with your journey xxxxx Liz xxxx

stella65
Posts: 150
Joined: Feb 2011

Hi Gail, your post was lovely, I wanted to give you some support, firstly because I know how it has helped me to find the support of this forum and secondly just because I feel your pain, of course I do, I don't need to have met you, I know the feeling of complete worry, feeling helpless, feeling angry, feeling sad, the list goes on! I am glad you have a bit more info now and I hope your mum can get the treatment she needs and deserves, sending a great big hug right back at ya! Take care of yourself as well as your mum X

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Hello....
First of all, I'd like to say that my heartfelt love goes out to you, your mum and your family.

I was in the very dark place your mum has been in. I've had many major operations on my abdomen over the years. Just when I thought I was ok, another scenario turned up last March. Yes, I did have cancer but first of all, I think it's a good thing to wait to see what the doctors tell you. It's not always cancer and, even if it is, there are different stages and different grades of the disease. It depends on where the cancer is too just how serious it is. Many people do get well these days.

I know it might not help, and I'm only saying this because you posted. It's natural to feel upset when someone close to you is diagnosed with cancer. People with cancer themselves sometimes have these feelings. So in feeling the way you do, it's normal and possibly part of the healing.

When I was first diagnosed, I had the exact opposite feelings. I felt calm though I was in a very dark and low position. Everyone is different. My husband felt helpless.

I tried to analyse what was happening to me and my feelings. What I came up with was that no matter what had happened to me in my life, no matter what I had sacrificed for others or for myself. No matter what I did or what others did, nobody was to blame. Cancer just happens. It seems unfair that I could have done things differently in my life had I known I would not live to a very huge age, but foresight is not something we are blessed with. I decided to make the diagnosis of what I had, not an ending, but a beginning.

Once my abdomen was drained, I felt much better. The pressure was reduced and, although I felt very tired, I was allowed out of hospital. I felt very low during the first week of each cycle of chemo, but after the treatment, I improved again. Now, although I'm not the same as I was before diagnosis, I get by and am happy even though I know it will return soon. I feel that life is great and I try to do things which will give me a positive outlook.

Nobody wants those around them to feel miserable so I told my husband, friends and family that too. I know it's hard for him and he has his low points. He keeps it from me but when he's upbeat, we talk about things calmly which he says helps. My husband is going through the same thing as me even though he doesn't have the illness.

I very much hope that your Mum is on her feet soon. With the love that you so obviously have for her, I know she'll have a lot of support.

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