View Full Version : Very afraid
I've deliberated over posting this on the forums as I don't even know if it belongs on an anxiety website. Last Saturday Mrs F revealed she has a lump in her left breast, that she has had discharge and flaky skin from the nipple. She last had a mammogram in late 2015 which showed a total of 7 cysts. On Monday she phoned the GP and was seen within an hour. In fact he was a registrar but anyway he's referred her to the breast clinic. They phoned yesterday morning but Mrs F was recovering from an epileptic seizure so couldn't take it, they will phone back on Monday.
I resisted the urge to google for a few days but gave in. Some info was reassuring and some frightening. Today we went for a drive through the countryside, then got some chips and sat in the car. Its just one of those everyday things couples do but when we got home I blubbed like a little kid. My mood has swung from between despair, relief and panic. The anxiety thinks its Christmas but I can't let it get in the way. Mrs F needs me now more than ever. I really cannot entertain the thought of life without her.
There's nothing anyone can really say I know.
MyNameIsTerry
11-08-19, 03:48
There's nothing wrong with asking for a bit of support mate, it's what this place is about :hugs:
I suspect the women on here will be your best bet for information on this. Breast clinics get a lot of referrals for all sorts of reasons from what I've seen and due to more recent NHS campaigns GP's have been using them more often, even with the fast track, as a just in case. In fact, the hospital director at mine was even in our local chip paper citing this as a resource problem causing them delays because GP's who referring for things that in the past they wouldn't because there are being wary.
So, perhaps with there being cysts and your wife's other health complications you have a GP that is making sure?
I would have thought flaky skin and discharge are things that happen to women, one of the many wonderful things they have to put up with?
She will need to be seen at the breast clinic and will probably have a mammogram (because she is overdue for one) and other investigations, hopefully all on the same day. All lumps need to be investigated which is scary but good because she will get a definitive diagnosis and if she had cysts before she is going to be prone to them.
Carys is the "expert" on this but I've had a couple of fast tracks to the breast clinic so I know what happens in my area.
It must be very frightening when you don't know and are assuming the worst but I'd just advise you to take it a step at a time and make the appointment when they ring tomorrow. If Mrs F can't take the call then make the appointment yourself at the breast clinic for her. Don't delay for your peace of mind's sake. The sooner you find out the better-rumination is worse than knowledge of the true situation.
Fishman, just because Mrs F has been fast tracked to an appointment doesn't mean it's the worst.
Many women get cysts and just that, but the GP is covering him/herself.
The fact it has been weeping in my opinion is good news.
I'm prone to cysts myself and they are very common with us ladies. Get the appointment rearranged with the thought that it is just a follow through and not think the worst. x
Oh goodness- the slings and arrows of life...
It is completely natural to feel the way you do. You love your wife and you are scared. Your mind is running away with you. But there is every reason to feel optimistic in this case. Firstly, the most likely outcome is that the lump will be benign. But, even if it is not, breast cancer is very rarely a death sentence. If the “worst case scenario” comes true you and your wife will get through it. It will just be a bump in the road. Good luck Fishman xxx
Thank you so much you lovely people, I think I'm more scared than Mrs F but she hides it better probably. I'm trying my best to keep the house running and went for my walk around town this morning, albeit on legs as rigid as wood.
The discharge has been going on for about three months. I just need to make sure I can drive her there, the last time she was in hospital was 2014 for a gall bladder removal. She had to stay in overnight and I was a mess but I've not had a chance to rectify that. I could take extra diazepam but really don't want to as the GP surgery would be on my back.
If it's possible why not get a taxi there and back? Then you wouldn't have the hassle of being able to drive, finding an elusive parking space if you do drive, feeding money into the machine if she has to stay for a few hours etc etc.
Of course she may prefer to go by herself? I always do as I can't bear to have anyone with me when having tests. I just want to get on with it and not have to worry about anyone else.
Hiyer Fish,
Sorry only just seen this. DONT PANIC......you know why.....as even if it is a form of breast cancer (which it might well not be with 80 percent of referrals to the breast clinic being for benign reasons)....the chances are that it will be highly treatable. I know SO MANY people who have had breast cancer, myself included, and modern treatments are individually tailored and highly effective. For the vast majority of women, treatment is totally effective and they go on to carry on quite happily with life. Going to the clinic and possibly have a mammogram, ultrasound and (IF needed) biopsy are psychologically awful, waiting for results even worse, but there are so many many thousands who have been before you and as cancer forms go this is the most treatable. I truly hope that this turns out to be something benign, of which there are many things it could be, but if not then you need that hope, optimism and statistics will be firmly on your side. Its frightening I know, but you would get through it. :o)
In a wee bit of a rush right now, but if you have any further questions or concerns I'll come back and check.
Carys is the voice of reason and experience in all this, Fishman. It's so important not to catastrophise before you know anything at all and you don't know anything at the moment. Fix up that appointment and take it one step at a time? DON'T google-it's a pointless and meaningless activity guaranteed to cause panic and distress. You don't need that xx
Pulisa and Carys thank you so much for your input on this. Well thank you everyone of course but you know what I mean. Pulisa the hospital is about 20 miles from here so a taxi would be a bit pricey. Our county hospital is closer at about 13 miles but Mrs F opted back in 2013 to go further afield because of our hossy's poor reputation. I shall just have to bite the bullet and drive. Googling must be the greatest curse of the modern age, Pandora's Box but yes I'll try to keep off it.
Carys you have given me some perspective. Its the word 'cancer' isn't it. I don't know why it petrifies me so much, well I do because I lost my Mum and brother to it. My Mum was lung cancer even though she never smoked and my brother had it between his heart and lungs. Having anxiety skews everything though doesn't it, this last week has been hell though Mrs F still manages to sleep? Though I do but that's the mirtazapine. I think at least 50% of what keeps going round and round in my head is originating in my own thought patterns rather than in reality.
As I've said here many times.... It's not cancer until they say it is. I know it's not much solace but it's a mantra among warriors and survivors.
Sending...
Positive thoughts
Take it one step at a time Fishman.
Of course you'll be able to drive, we always manage to find that inner strength when we need it. x
Thank you both for your very helpful input. OK we were promised a phone call for this morning but it didn't come so I phoned them at about 4pm. They didn't know of any call back and the waiting time for an appt is 6 to 8 weeks. Yes weeks. So what happened to the 2 week guideline? And this is the 'better' hospital? So a week wasted and we phoned the GP surgery for another referral, hopefully a quicker one this time.
Anxiety today has been on another level. And everything I enjoyed seems pointless somehow.
Dying_Swan
12-08-19, 19:28
Hi Fishman.
I don't have much I can add, but didn't want to just read and run. I found the statistic Carys shared reassuring, about 80% referrals being benign. Waiting around is so difficult, and I hope you and your wife soon get some answers. Wishing you both the best x
Thank you both for your very helpful input. OK we were promised a phone call for this morning but it didn't come so I phoned them at about 4pm. They didn't know of any call back and the waiting time for an appt is 6 to 8 weeks. Yes weeks. So what happened to the 2 week guideline? And this is the 'better' hospital? So a week wasted and we phoned the GP surgery for another referral, hopefully a quicker one this time.
Anxiety today has been on another level. And everything I enjoyed seems pointless somehow.
Wait - what?? A six to eight week wait for an urgent referral to a breast clinic? How can this be?
Hi Fish , sorry to read you are going through a rough time again , you are doing what we both have done time and time again , one of our family isn’t well and our minds have fast forwarded to worst case , death , funeral and how our lives will be without them , but how many times has it not turned out not to be as bad as we thought ? Too bloody many and hopefully this will be the same , I know it’s pretty much impossible to stop your mind running away with itself but the best thing is keep busy and carry on doing what you normally do .
On hospital appointment days ( every other week in our house ) I still carry on the same , walk the dogs , do some bits and bobs until it’s time to go , I take half a diazepam to take the edge off and make sure I’ve eaten and drank something.
You can get through you’ve done it before .
Sorry to hear that you went through it Carys , there is so much we don’t know about people’s struggles on here and what they’ve been through to bring them here , it’s good that you have kept your sense of humour and positivity.
Take care mate .
Yes, how can it be ? Its not usually even that long for a non-urgent referral. That is a disgrace! Did the GP definitely send the referral marked as 'urgent/two week rule'. If she did, and the hospital cite 'volume of referrals and patients', then one would question how on earth they could be so far off the NICE guidelines and be mismanaging their resources.
Anyway, that doesn't help you right now, and it is downright cruel to expect someone to psychologically cope with that timescale, besides having messed up even getting back to you anyway. I am glad to hear you have recontacted the GP, and if they can make no further headway then consider another hospital! If you need further advice then I would highly recommend the helpling at www.breastcancercare.org , which isn't JUST for people with BC as there is a board there for benign conditions and they are there to help anyway at any point in the process of assessement. Sometimes they can come up with some good suggestions and support for those who are having some difficulties with the NHS processes.
Sorry to hear that you went through it Carys , there is so much we don’t know about people’s struggles on here and what they’ve been through to bring them here , it’s good that you have kept your sense of humour and positivity.
Over three years ago now Buster, hardly in my thoughts much to be honest apart from at times of mammograms. Thanks for your kind words though.
Thank you all, you're such a brilliant bunch of people. Buster yes anxiety paints a wonderful picture of the future doesn't it. I've had visions of the funeral, how will I cope without her? One thing though that really really does scare me is that Mrs F has a set of illnesses as it is. Epilepsy, crohns disease, fibromyalgia, hip problems and a fatty liver with some cirrhosis.
But one step at a time. The anxiety has been a raging monster. I can't believe its been a week since we were referred by the GP, it feels like a 40 years. Oh for private medicine eh? Carys it was sent as urgent, the woman I spoke to said the unit is having 'capacity issues'. PC speak for too many patients? Must get to bed guys. Night all.
MyNameIsTerry
13-08-19, 02:11
I think you should go back to your GP about this. As far as I know, I'm sure Carys can confirm, you have a legal right to a 2 week window if that's what the GP has requested (England only). You waive this right if you choose to ask for a different appointment because you can't make it. There may be a possibility they have made a mistake in thinking this is a rebooking because of the missed call (which is a competence issue at their end, of course) or perhaps the person spoken to didn't notice it was an urgent request.
But 6-8 weeks looks suspiciously like the timescale of the non urgent referrals to NHS depts.
EDIT: Just noticed the 'capacity issues' bit. Well, then it comes down to which patients know their rights and make noise as opposed to those who accept a fob off :winks:
MyNameIsTerry
13-08-19, 02:28
See 1.8 P8-9:
https://researchbriefings.files.parliament.uk/documents/CBP-7171/CBP-7171.pdf
You might find that legal right is affected by the ability to offer an alternative testing location although patient ability to reach it would also be a consideration.
Also see https://www.cancerresearchuk.org/cancer-symptoms/what-is-an-urgent-referral#howquickly as it differs outside of England.
Fishman I can't help thinking why Mrs F had no follow-up in 2015 when they found 7 cysts. I'm not saying they are cancer related and being as it was 4 years ago would probably point to them being anything more. But I find it strange that Mrs F didn't follow that through for investigation and also her GP at the time.
7 cysts on your breast is an incredible amount.
4 years after and the situation is being looked at.
And this 6-8 weeks wait sounds like a time from an patients request not a GP referral of urgency.
Something is amiss here. I think you need to speak to the GP yourself and find out what's what. Why has she waited so long to get this checked out?
How has Mrs F reacted when she found out it was up to a two month wait? I know I wouldn't be best pleased.
I know when my mum had breast cancer it was dealt with very quickly and there was no doubt that she did have it on examination.
Fishman, the situation has already upped your anxiety. Find out as much information as you can, because you need to know the facts here, it's all a bit obscure as it stands. x
I agree with Carnation. An urgent referral means just that-within 2 weeks no matter which hospital is involved.I thought Mrs F had had a recent mammogram because you mentioned your anxiety regarding the imminent test?
I'm really surprised you didn't get a call from them yesterday too. I know there's "patient confidentiality" but I think you do need to at least try to find out what is going on here.
Hi guys and thank you so much for the advice, suggestions and statistics. OK the mammogram in October I think? of 2015 showed the 7 cysts, Mrs F was reassured as was I but it never occurred to me that it would need following up. So if breast scans are carried out every 3 years then she should have had one last October. I can only conclude that she had a reminder letter but didn't act on it. I'm hoping that won't prove costly.
Mrs F phoned the GP surgery late yesterday afternoon and left a message on their system requesting a referral to a different hospital. She then phoned again this lunchtime and got through to the receptionist, who promised she was on to it, as in referral request. I heard her explain that the previous hospital had the 6 to 8 week wait and that she wasn't happy with it. We've had no return call so am assuming they will either phone tomorrow or send a letter?
Also something I'm wondering. When she is referred to a different hossy, does the 2 week limit start over again from today or from the original date which was a week yesterday the 5th? Surely the latter.
PS - Pulisa the scan you're thinking of was an MRI which she couldn't attend, Friday the 9th. That was for the fibromyalgia though.
PPS - she did have an X-ray at the end of June though on her hip I think. It's difficult to ask her these questions as she is asleep so often, she is now.
Dying_Swan
13-08-19, 19:44
Hi Fishman.
I had a 2-week referral a while ago and it was 2 weeks from the date of referral, rather than from the date of the appointment. I have a feeling they booked it there and then on the phone through the Choose & Book system, though I can't quite remember. I definitely got an appointment letter quite quickly. With mine, there had been a bit of confusion as I had thought it was a 2-week referral, but the GP had put it in as "urgent", and the wait for "urgent" was more like the 6-8 weeks your wife has been given. It was then upgraded when I called to ask about it. It's possible something like that has happened, and I'd be inclined to advise your wife to contact the GP surgery again to confirm that the referral has been completed and what the expected timescale is. I hope you hear something soon. It's very hard waiting.
MyNameIsTerry
14-08-19, 01:54
It's 2 weeks from the date of request by your GP. It no longer remains a right if you choose to change the appointment, say you can't make it or ask for a different location as you are waiving your rights. If they could slide the 2 weeks back on the basis of them changing hospital it would allow the NHS to start massaging their lead times so I don't think that would be allowed (or at least it wouldn't once the media got a hold of it...bosses may certainly try such things until they are caught out :whistles:
). However, from a practical point of view it may not be reasonable in certain circumstances e.g. the first hospital drops the ball and the second only has 48hrs to make the target, but certainly nothing like 6-8 weeks but it may be legally considered "as soon as is possible" which then becomes subjective (I've worked with lead times in regulatory environments in the utility sector and this tends to be how governance word any it to allow for later appraisal of whether the service have attempted to do as much as they can, but I can't speak for the NHS lead times). It may say in one of the above docs.
There are a load of NHS pledges on top of this that cover diagnosis and starting any treatment but they aren't legal rights.
Dying Swan and Terry, thank you for your posts. Mrs F phoned this morning, she was promised a return call from the referral secretary which never came. So she phoned again and the secretary had gone home. So, we are to phone at 8am. From your post Terry I understand that means the 2 week scale starts again then? Ten days of this hell already, the anxiety has been unbelievable.
SO, did the GP do another referral? She should NOT have to be ringing around people as she is, this is nuts, and makes no sense. I can't work this whole scenario out to be honest Fish, I do think you need to be present when these phone calls/meetings take place to get the facts.
I agree. Stand next to Mrs F next time she phones or better still, you phone with Mrs F next to you.
Thanks guys for your support, it means such a lot to me and I only wish I could be as supportive to you all but I'm in survival mode right now. OK I was at my Dad's and a call came through from the GP surgery secretary on the mobile. She has made another referral to a different hospital again (are you allowed to name hossys on this site?), though whether this one has shorter waiting lists I do not know. I've gone online with the choose and book thing and requested an appt. Is it cheeky to phone the clinic and ask about appt waiting times? Surely we have to accept somewhere at some point?
With Mrs F she is asleep so much I have to make decisions for her or she'd never get anywhere. The clinic shuts at 5pm but its an answer phone all the time. I've even started reading my Claire Weekes 'Peace from Nervous Suffering', that's a sure sign I'm struggling. Bit late now though.
......ok, but Fish, is it an 'urgent/two week wait' referral ?
It is Carys yes, it says so on the letter.
Fishman,
Just want to echo what everyone else says, that it's very probable that it's nothing to worry about. However, I'm a long term carer for my mum who has lung cancer (my dog, sadly, was also just diagnosed with cancer of the blood vessels). When life throws up these challenges we think, as anxiety sufferers, that we'll never be able to cope. Which is ridiculous because we're the strongest people around, we deal with anxiety every day of our lives! Life adapts, we adapt and we do cope, somehow.
I hope you both get the reassurance you need soon x
I'm so sorry to hear that Lissa, you have an awful lot to deal with yourself. And yet you sound so positive in what must be an incredibly testing time for you all. Thank you for your very kind words, there is such a lot of compassion on these boards don't you think? Hope for all of us.
MyNameIsTerry
16-08-19, 01:58
From your post Terry I understand that means the 2 week scale starts again then? Ten days of this hell already, the anxiety has been unbelievable.
You mean if they have to send a 2nd letter to the same hospital? The 2 week would kick in again form that date potentially. However, they should be reminding them this is not a new request and you should take priority over others referred under the 2 week process...but this really comes down to how they manage their customer service and the NHS being a public body are often very bureaucratic so I wouldn't be surprised if you just become a "new customer" which is exactly what I found with therapy and had to complain they were shoving me back down the list when I had already been on it months.
The new hospital will be judged by the 2 week rule because it's not their target failure. The old hospital...will probably just get away with being crap and no one will ever see the service failure if they don't have processes to capture these types of abandoned referrals...again I wouldn't be surprised as the NHS has always had a cover up culture.
I would just keep on your GP's case. They are the primary care giver and responsible for that referral too and GP's often need a nudge to pick up a phone and be arsed to chase things up :winks:
It might be quicker to just make another appointment with the GP eliminating that waiting for the phone to ring or if you are bold enough to go there and plonk yourself on reception until you have an answer one way or another.
Thank you all, real troopers. OK I got through to the latest hospital and they now have Mrs F on their system. I explained the situation, that the original referral was made on 5th August. She said their waiting time for an appt is about 2 weeks and they will either phone or send a letter. It's a hospital outside our county but no further than our 'county' hospital. I don't think we can get any better than that other than going private but we are poor so that's out. This receptionist was much more on the ball and seemed like she actually cared?
So now it's the next stage of waiting. This hospital is where my step-mother died in January 2000, though she had a very long history of alcoholism. Every morning when I wake I suddenly remember what is afoot. Nobody said life was easy did they.
OK the hospital phoned this morning and have made an appt for 2pm on Wednesday. I'm relieved that all the what iffing may come to an end. Of course that depends on the outcome.
Good luck - we will be thinking of you both on Wednesday xx
Dying_Swan
19-08-19, 17:11
So glad you got it sorted and don't have too much longer to wait. Not knowing is so difficult, and hopefully on Wednesday you'll at least have a clearer idea of what it might be. All the very best to you and Mrs F for Wednesday.
I'm pleased you don't have a long wait and well done for getting it sorted.
Thanks guys, you're all a very special group of people, I hope you know that. I keep wondering how much of this is in my head and how much is reality, because anxiety skews everything doesn't it. On the one hand I'm thinking of how I'm going to negotiate the actual visit to the hospital, on the other my reaction to a negative outcome. I have to remind myself that a medical investigation of this kind would be a worrying time for anybody, let alone for us who have anxiety disorders.
So maybe I can influence how I react to the situation and have been trying meditation. There is one I've found on youtube 'Guided Meditation for Detachment from Over Thinking' by Micheal Sealey. Is he any good? Though quite how I'm going to practice it while navigating a very busy town centre en route to the hospital, I don't know.
Well we've dodged the bullet again. We went into see the consultant who gave Mrs F a clinical exam and straight away he said he thought it was fibrous tissue. He ordered a mammogram and ultrasound to make sure, his words. The ultrasound revealed a swollen lymph node in her armpit but nothing suspicious.
So ends 3 weeks of health anxiety which I'm pretty sure I'd be diagnosed with if I went to see a psych doctor. Though in my defence, Mrs F genuinely thought there was something wrong too. And the radiographer did say he would rather we regretted wasting their time than coming in too late to be treated and regretting then.
So I can garden again now and all the other stuff normal people do. The anxiety meanwhile will switch to something else.
Aw, congratulations to both of you, that's wonderful!
Dying_Swan
21-08-19, 18:17
Fantastic news. I'm so pleased for you both. Please don't beat yourself up. Anxiety is normal in some situations and I'd say this was one of those situations. Enjoy your garden :flowers:
PHEW!!!! Best news ever! Now breath!
Thanks guys, I honestly feel exhausted by it all. But the GP needed to cover his back and in such situations you need a consultant's opinion. It was very sobering being in the breast clinic though, thinking of the poor women there who are not so lucky.
MyNameIsTerry
22-08-19, 01:51
My dad said that when he went in for some lumps (not the breast clinic though, although navigating our local hospital can be tricky :winks:). It's what made him finally give up smoking.
Glad to hear it is all sorted. Given your wife has health complications I would expect any GP to be more cautious because she is in at risk grips for things unlike others.
And you've dealt with the really bad part...hospital parking! :winks:
Thanks Terry. Oh yes hospital parking, I've yet to find an easy hospital car park. I'm pleased to hear your Dad packed up the smoking, its the single worst thing we can do for our health I think. You're right about Mrs F's health issues, when you already have a list of diagnosed illnesses it stands to reason that your body can only take so much. But we live to fight another day.
MyNameIsTerry
23-08-19, 02:31
Cheers fishman. He hasn't smoked in probably 10 years now after weaning off. He had give up before many years ago but started again. Been smoking all his life and now in his late 70's. Life gives us a little nudge in the right direction with those near misses.
Our hospital is the same. Caring people will give you their tickets to save you wasting your money. It has always amazed me how the NHS have the cheek to charhe their own staff which is a significant salary cut to many, I'm less concerned about the whinging consultant parking the £60k Merc though :winks:
The weather is pretty good at the moment so you should be ok for a spot of gardening. I often find just garden maintence work is very good for anxiety although I think our resident sparrows were glad I buggered off back in today so they could get at their food.
Maybe you & MrsF can have a nice day out if the weather is good?
WiredIncorrectly
24-08-19, 00:25
Just wanted to say congrats on the all clear.
Thanks WiredIncorrectly. Smoking is notoriously difficult to kick Terry as you well know, so your Dad deserves huge credit for that. My daughter smokes and has made several failed attempts to pack it in. Though when you're 20 you think you're indestructible :wacko:
Mrs F has been in sleep mode since this finished so not able to get out anywhere yet other than my Dad's. I'm enjoying a 'post crisis lull' at the moment but it won't last...
I've not posted much on the forums recently but Mrs F had her mammogram last week and she's been called back. The letter came this morning. I don't know what to do.
nomorepanic
29-10-21, 18:54
I had this and it was a worrying time but was just calcifications so don't think the worst.
Doesn't Mrs F have a history of multiple cysts? One thing you just can't do is jump to worst case scenario mode when you know absolutely nothing about the reason for the recall.
Does she have a date to be seen again? I hope so. You could always ring a breast care charity to talk about your anxiety? The nurses there will be used to explaining how the system works and the possible reasons behind a recall. Better to get genuine information from them rather than from Dr Google?
Thank you Nic and Pulisa. She has an appt for next Thursday the 4th. I always do worst case scenario Pulisa, you know me. And why does it always take times of adversity to make me realise what she means to me?
I haven't consulted Dr Google though and aim not to.
I was recalled a few years ago. It was a cyst and they drained it, I get cysts a lot and have had them in my boobs before. Try not to worry too much (yep I know that's hard), try to keep busy.
Hi Fish ,here we are again in our parallel lives , I just did the making myself ill with worry over my partners breast problem and mammogram, all for nothing and what it has done is pretty much finish off our relationship because all I was doing was focusing on how it was affecting me not her , spiralling into worst case scenarios and for what ? It doesn’t change the bloody outcome, we don’t learn do we ? , both of my daughters have had cysts that didn’t need treatment and recently my uncle had to go to the breast clinic for a mammogram, yeah uncle , he said every woman in there was looking at him like think you’re in the wrong place love , men do get breast cancer but I doubt any would check , anyway his is a cyst as well .
Taking my daughter to hospital this week to see about her future treatment , wouldn’t you just love a couple of years break from going anywhere near those places ?
Hope it all turns out okay bud .
Thank you Catkins and Buster for your very kind comments and reassurances. I'm very happy you both had positive outcomes and I'm hoping for the same. The anxiety this afternoon has been stratospheric. Time has stood still since that letter landed on our doormat on Friday. I'm walking the dog while switched to autopilot, the body is functioning while the mind is trying to predict events a year from now.
Well we've dodged the bullet again. We went into see the consultant who gave Mrs F a clinical exam and straight away he said he thought it was fibrous tissue. He ordered a mammogram and ultrasound to make sure, his words. The ultrasound revealed a swollen lymph node in her armpit but nothing suspicious.
So ends 3 weeks of health anxiety which I'm pretty sure I'd be diagnosed with if I went to see a psych doctor. Though in my defence, Mrs F genuinely thought there was something wrong too. And the radiographer did say he would rather we regretted wasting their time than coming in too late to be treated and regretting then.
So I can garden again now and all the other stuff normal people do. The anxiety meanwhile will switch to something else.
From just over 2 years ago..Recalls are about being extra thorough and protecting women. If anything needs a second opinion the breast care consultant will have the knowledge to make a judgement call. She's got a history of multiple cysts and fibrous tissue in recent years.
From just over 2 years ago..Recalls are about being extra thorough and protecting women. If anything needs a second opinion the breast care consultant will have the knowledge to make a judgement call. She's got a history of multiple cysts and fibrous tissue in recent years.Very true Pulisa. I think I'll print that out multiple times and pin it up all over the house.
Hoping that you have more clarity now re Mrs F's mammogram recall. It must have been a very stressful week for you..
Hoping that you have more clarity now re Mrs F's mammogram recall. It must have been a very stressful week for you..Its been an awful week Pulisa but thank you for your kind wishes.
The doctor thinks the anomaly on the mammo is a swollen lymph node. Mrs F told her about the assessment done at the other hossy in 2019. But because our local hossy (where we were today) doesn't share its records with anyone else, she will have to request them. If this anomaly doesn't show up on the 2019 mammo then Mrs F may be recalled again. It doesn't help not being in there to hear this first hand but covid etc.
I honestly feel worn out. How much anxiety can the body take?
Its been an awful week Pulisa but thank you for your kind wishes.
The doctor thinks the anomaly on the mammo is a swollen lymph node. Mrs F told her about the assessment done at the other hossy in 2019. But because our local hossy (where we were today) doesn't share its records with anyone else, she will have to request them. If this anomaly doesn't show up on the 2019 mammo then Mrs F may be recalled again. It doesn't help not being in there to hear this first hand but covid etc.
I honestly feel worn out. How much anxiety can the body take?
So more waiting but it doesn't sound as if the consultant is over worried? I know this won't reassure you until the doc sees the previous mammo and delivers her "verdict" though.
I think the body can manage anxiety so long as you only deal with what you know and you don't allow yourself to speculate/ruminate on what you don't know.
I agree Pulisa but I do feel reassured that the consultant believes it to be a lymph gland. They must have a fair idea otherwise she wouldn't commit herself like that? And they must look at thousands of such images.
These days I find I need certainty all the time. I can't seem to deal with anything half baked. Its either 1 - yes its cancer and the game's up or 2 - everything's fine you can go home.
I hate the grey areas too..and the waiting. I know it's how the NHS operates but it's gruelling for those with an anxiety disorder.
I do think that today has brought you a degree of reassurance and I hope you can soon get that much needed "everything's fine" option.
Here I am again on this thread. Mrs F has had pain in her chest when swallowing food recently. Now it's highly likely to be down to the crohns disease. Any part of the digestive system can be affected by crohns, she did have two ulcers at the back of her throat not that long ago. But the panic has taken off due to thinking its something worse. She tried to get a call back from a GP but none are available and we'll have to try tomorrow.
Mrs F herself doesn't seem overly concerned.
Pain in her chest or at the back of her throat?
In her chest Pulisa. She was prescribed ABs a couple of weeks ago to address sores on her stomach and arm. I wonder if there's a connection there?
Erythromycin by any chance?
Erythromycin by any chance?I'll find out, she's asleep right now. They were prescribed 21st December. it does seem a bit odd?
Erythromycin by any chance?Flucloxacillin.
It could be ulcers in her oesophagus maybe? Does she take omeprazole daily?
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You see because she sleeps so much, she'll be taking these and laying straight back down. And this is aside from the volume of tablets she takes. Dihydrocodeine, atenolol, paroxetine, trazadone, fentanyl patches, carbamazepine, metformin.
It could be ulcers in her oesophagus maybe? Does she take omeprazole daily?
Sent from my iPhone using TapatalkIt could well be Scass. My anxiety jumps to the worst case scenario as usual. She doesn't take omeprazole I'm sure.
A common side effect of flucloxacillin - stomach upset, feeling sick, heartburn, indigestion. This on top of crohns disease?
You see because she sleeps so much, she'll be taking these and laying straight back down. And this is aside from the volume of tablets she takes. Dihydrocodeine, atenolol, paroxetine, trazadone, fentanyl patches, carbamazepine, metformin.
Who is prescribing all this, fishman?
Who is prescribing all this, fishman?Its all on repeat Pulisa and gets reviewed each year. In actual fact none of those are for crohns disease. She used to take olsalazine for it, I remember them being a yellow tablet. She's also had prednisolone for flare ups in the past.
The GP phoned back this morning and has ordered blood tests and an endoscopy. He seems to think its a crohns flare.
Anxiety has really hit this afternoon.
Will the GP liaise with her crohns consultant about her symptoms?
Will the GP liaise with her crohns consultant about her symptoms?They always have done in the past. Though she's been off the books of any crohns consultant for a good while now. The last one she saw must have been 2017. The GP can't prescribe crohns meds without a consultant's say so.
Having the endoscopy will show if the crohn's is affecting her oesophagus and then she would be referred back to the gastro team which may give you more of a sense of security knowing that you had access in theory to a specialist rather than a GP? It may just be a case of reflux though especially as she sleeps so much. Could you try propping her up a bit more when she sleeps?
It’s good that they are arranging appointments for her. I know you’re frightened, but there’s nothing you can do at the moment, and we all know that fear doesn’t help.
Is your daughter out of isolation now? Have you discussed the fact that now your daughter has had it, that maybe your wife could stop living in her room?
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I just wonder whether she is being sedated by these drugs far too much? It can't be good for her to spend so much time asleep?
Hi guys. Thank you for your very kind input. You both make some very good points, but things have gotten away from me this evening so I'll have to reply tomorrow. There are so many things going through my head, what with my Dad frailer now too. Thanks for listening.
OK I've got her an appt for a blood test, the 24th!! So not in a hurry. She is saying her voice is croaky so I'm assuming that's the crohns.
The amount of medication is a concern and I've often wondered which is having the greatest effect, the fibromyalgia or the medication. Her fitness levels must be as low as they can get. The consultant she last saw regarding the fibro said exercise was the key, she repeated this each time we saw her. I suggested short walks with myself in attendance but she won't.
Meanwhile the anxiety has been having a ball, lots of old patterns creeping back in.
It’s good that they are arranging appointments for her. I know you’re frightened, but there’s nothing you can do at the moment, and we all know that fear doesn’t help.
Is your daughter out of isolation now? Have you discussed the fact that now your daughter has had it, that maybe your wife could stop living in her room?
Sent from my iPhone using TapatalkSorry Scass. Yes our daughter is back at work, neither myself or Mrs F caught the virus. Of if we were exposed to it, our immunity must have fought it off.
OK I've got her an appt for a blood test, the 24th!! So not in a hurry. She is saying her voice is croaky so I'm assuming that's the crohns.
The amount of medication is a concern and I've often wondered which is having the greatest effect, the fibromyalgia or the medication. Her fitness levels must be as low as they can get. The consultant she last saw regarding the fibro said exercise was the key, she repeated this each time we saw her. I suggested short walks with myself in attendance but she won't.
Meanwhile the anxiety has been having a ball, lots of old patterns creeping back in.
Would she do something at home? Yoga maybe? That might help her and if you did it too it might help with your anxiety? There are lots of things on YouTube.
The croaky voice could be related to reflux?
I have a chronic pain condition and choose not to take medication on the advice of the pain management consultant and also because as a carer I can't be sedated. I do rely on stretching exercises to help me cope with pain connected to nerve ending irritation which mimics shingles. I know it's hard to understand but exercising helps you break through the pain barrier and get a greater tolerance so that it becomes more like a background irritation. To begin with I couldn't bear the pain and was afraid of it but now I take it in my stride and have got a lot more flexible as a result which is a good thing for a wrinkly!:)
But if she'd rather take to her bed then there's not a lot you can do. It's up to her ultimately. You do everything for her so she has no reason to change her lifestyle.
Would she do something at home? Yoga maybe? That might help her and if you did it too it might help with your anxiety? There are lots of things on YouTube.Hi Catkins. That's a good suggestion thank you. However, if she doesn't want to do something she won't. No amount of persuading will make a difference. It wasn't always like this, in the early days of our marriage she did her share of housework etc.
As for me I already do an advanced 'over 50s' cardio workout most days. Plus dumbbells and stretching exercises. I should probably try yoga too.
The croaky voice could be related to reflux?
I have a chronic pain condition and choose not to take medication on the advice of the pain management consultant and also because as a carer I can't be sedated. I do rely on stretching exercises to help me cope with pain connected to nerve ending irritation which mimics shingles. I know it's hard to understand but exercising helps you break through the pain barrier and get a greater tolerance so that it becomes more like a background irritation. To begin with I couldn't bear the pain and was afraid of it but now I take it in my stride and have got a lot more flexible as a result which is a good thing for a wrinkly!:)
But if she'd rather take to her bed then there's not a lot you can do. It's up to her ultimately. You do everything for her so she has no reason to change her lifestyle.You're not a wrinkly Pulisa. But yes being flexible has advantages.
I'm sure her croaky voice is her crohns as she's told me its in her throat too now. I've been to buy ice cream and yoghurts. She had mashed swede and faggots earlier.
OK I've decided to post my thoughts that run through my head while walking our black lab. Normally I get home and think 'no its not worth posting'. So I don't.
Anyway Mrs F had her blood test results which show her crohns to be 'stable' ATM. Which then said 'no further action'. Also her cholesterol is high. However, she still has the pain after swallowing food. I keep buying her yoghurts and cous cous, because they are easier to swallow. So if the crohns is stable, what is causing this pain? And yes I've leapt to worst case scenario again. Would they have tested for the worst case scenario in this blood test?
She has three other tests that she was supposed to have handed in but hasn't, one urine for diabetes and two stool for the crohns (I think). So are they getting an incomplete picture? I was over at my Dad's today, chatting about old times it I had this sudden realisation of my love for him. Which sounds ridiculous because I knew that anyway. Thinking about Mrs F has likely brought these feelings to the surface, because much as I complain about her on these threads, I do love her.
Which brought my thinking looking into possible future scenarios if I lost her. After all, its been 27 years this September since we got together. In all that time I haven't held down a job. She was epileptic already when we met, and its brittle epilepsy which makes it unpredictable. So I've been her carer while more health conditions were added, the crohns, type 2 diabetes and fibromyalgia. So I've been in this carer bubble for a very long time. I joined the family firm (builders) on leaving school and trained as a bricklayer on day release at college. This employment ran from 1981 to 1995, with many 'mental health related' interruptions after 1985.
It became a cycle of breakdown, recovery, back to work, breakdown, recovery etc. I was prescribed diazepam in 1992 and have been on it ever since. Probably some kind of record? 10mg per day, taken whilst still in bed in the morning, giving them 15 mins to get to work and then up. This ritual continues today. I hate it but seem unable to stop it. Whenever I try, life gets rougher so I go back to the same behaviour. How much of this is OCD?
I live in such a bubble now and the lockdowns have really brought it home to me just how repetitive and predictable my life is. I think by the fact I haven't noticed a change since restrictions were largely lifted. I'm still the weirdo who walks his dog at the same time and same route (mostly). I seem to have lost track of what I wanted to say. It was going to be about how I would survive if I lost Mrs F but seems to have deviated.
I suppose that will do for now. The workout calls but I even wonder whether that's really worth doing.
I have many rituals too, Fishman. I'm very predictable but I have to be as it's a way of life for me and would be even if I weren't a carer. I have a terrible fear of getting behind in my "schedule" and can't bear to leave things "for another day"...because I hate things hanging over me. That's my problem though.
What is your worst case scenario for Mrs F's pain? Not related to Crohn's I mean?
I have many rituals too, Fishman. I'm very predictable but I have to be as it's a way of life for me and would be even if I weren't a carer. I have a terrible fear of getting behind in my "schedule" and can't bear to leave things "for another day"...because I hate things hanging over me. That's my problem though.
What is your worst case scenario for Mrs F's pain? Not related to Crohn's I mean?I do notice you're on the site early each day Pulisa, around 8? There is safety in routine. Worst case scenario with Mrs F's pain would be esophageal cancer.
So I take it you've been on US medical sites due to the spelling of this particular cancer, Fishman?:winks: What about simple reflux as an alternative "diagnosis"? I presume food doesn't actually get stuck when she swallows?
Yes you can set your clock by my online habits! I get up at 445am each morning too in order to get the washing done and the guinea pigs fed and cleaned out before the onslaught!:)
So I take it you've been on US medical sites due to the spelling of this particular cancer, Fishman?:winks: What about simple reflux as an alternative "diagnosis"? I presume food doesn't actually get stuck when she swallows?
Yes you can set your clock by my online habits! I get up at 445am each morning too in order to get the washing done and the guinea pigs fed and cleaned out before the onslaught!:)LOL you read me like a book don't you!! No nothing gets stuck AFAIK, though its soft foods she's having. She does spend an awful amount of time laying on her back though, we're talking probably 18 hours in a day.
We used to have two guinea pigs, Pepper and Shrek. They were my daughter's but became 'mine' eventually. I was actually quite upset when they died. Cute little guys aren't they.
Ours are certainly divas!
Why not try some OTC anti reflux meds like nexium if these are compatible with Mrs F's regular meds? Also extra pillows at night?
Reading your latest post fishman I quickly realised that I have thought the same as you if I was to lose Mr C and as far as I know he is in good health as I post. I think it's a very common thought and maybe something we shouldn't dwell on for obvious reasons. Especially as we are told so often to live in the present. And the future is something we can not predict.We can't stop those thoughts and they are natural when we grow older.
So my advice is to not put too much emphasis on the matter and enjoy your time together as much as possible.
Thank you both for your replies and apologies for not getting back to you sooner. I seem to be posting on the hoof lately. I'm certain this problem Mrs F is having is crohns related. Though that nagging doubt keeps on and until she has an endoscopy done I won't be able to relax.
In the meantime I have a dentist appt tomorrow morning and need to focus on that.
I appreciate how much of a challenge dental appointments are for you so wishing you all the very best for the morning and i hope it's an ok experience.
Is there any follow up planned for Mrs F or is it a second GP appointment? My son has been waiting for an endoscopy for weeks at a London hospital as he is choking a lot and needs his operation site widening. Covid appears to have caused so much delay in gastro appointments in London. I hope Mrs F won't have such a wait if it's decided that she needs one. Does she want to push for an endoscopy do you think?
Its all on repeat Pulisa and gets reviewed each year. In actual fact none of those are for crohns disease. She used to take olsalazine for it, I remember them being a yellow tablet. She's also had prednisolone for flare ups in the past.
The GP phoned back this morning and has ordered blood tests and an endoscopy. He seems to think its a crohns flare.
Anxiety has really hit this afternoon.
Looks like she was meant to have an endoscopy last January? Maybe it was shelved as her bloods were normal?
I'd totally forgotten about these posts Pulisa, I'd been going through my handwritten anxiety diaries looking for any mention of endoscopies. Right so he did refer her, but it never happened. Thank you for pulling these posts up, you're good at that I've noticed. Must be the spook in you?
I've retained some of my skillz from the distant past...
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