Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Lynne888 on February 05, 2017, 12:03:54 PM
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It was suggested I post on this section of the forum as I have been discussing it on a post elsewhere. I've had a horrible 10 months. I found blood in my poo last April and immediately went to see my GP who didn't really think it was anything serious and only referred me as *none urgent*. 4 months later I hadn't heard anything so I went back and spoke to my GP who said it had *only been* 4 months and I would probably hear something soon. 6 months later the bleeding was worse so I went back again and this time she did refer me urgently and within a week I was seen by a consultant. I then had a failed colonoscopy. The pain was absolutely awful and also my bowel hadn't cleared well so it was all a bit of a nuisance and a delay. However, a large polyp was found. I then had a few CT scans and was called back in to see the specialist in November. I was so relieved to hear I hadn't got cancer and the only thing that needed doing was the polyp taken away which would be done by sigmoidoscopy. This was done 2 weeks ago. I got a phone call last Tuesday asking me to the the consultant the following morning. Absolute terror gripped me at this point. I knew it was bad. So it transpired the polyp was cancerous and I now have to have an MRI scan to see if it has spread. The CT scans were not strong enough to see any cancer (and I'd already had a panic attack at a previous MRI and just couldn't do it). I don't know how I'll get on at the next one but I have to try and do it. The consultant said there is a 95% chance the cancer is contained. I wish this made me feel better and maybe 3 months ago it WOULD have been half decent news, but after being told I didn't have cancer and now being told I do, I don't have much faith in the news I'm afraid. If the CT scans didn't pick anything up and I had cancer, it may not have picked other areas up surely? I'm told it may have only been in the polyp and I could be cancer free. The alternative is that the cancer is in a few spores around where the polyp was and I would need chemo. If it has spread to the glands then I will need major surgery. It's a lot to take in. I hope it's treatable. I'll keep you informed.
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So sorry to hear your news. It is a lot to take in and I know exactly how you feel as I am currently receiving treatment for ovarian cancer. Like yourself , at various stages I was told that things weren't as bad as they subsequently turned out to be and that has made it harder for me to place my faith and trust in my medical team as much as I might otherwise have done.
Hopefully your MRI scan will reveal that there has been no spread and you will need no or minimal further treatment - chemotherapy may be offered if they feel there is any risk of reoccurrence from stray cells. It isn't pleasant but it is doable. If you want to see how several of us on here have/ are coping with it there is a thread about it on this part of forum. Update on my breast cancer is title I think.
Whatever happens, try to relax as worrying doesn't actually do anything except make you feel rubbish ( easier said than done having spent a weepy weekend) - it is a scary journey that no one wants to take and at times you'll feel like you are alone with it all - that is normal, as are all the other strong emotions that seem to come out of nowhere . Always here to listen x
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Thank you coldethyl for your really lovely reply. It makes me feel better to know that someone else has had their trust shaken in the same way albeit not a nice feeling for any of us. Chemo frightens me a lot. I don't tolerate any drug well. Different GP's have ben trying for 8 years to try and sort out a blood pressure pill that either works or doesn't make me feel ill. Everything has caused side effects. Some of the blood pressure pills have sent my blood pressure higher. The doctors look at me as if I'm lying! Myself and my brother (also diagnosed with cancer) both have problems with drugs as did our dad so it's obviously in our system. We both have to have enough dental block to knock out an elephant as it just doesn't take on us, so naturally enough I'm wondering just what sort of effect chemo is likely to have on me. Thank yo again for your kind words, I shall read your story now. x
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If you need chemo , your oncology team will be aware of your issues with medication and may admit you onto ward for first infusion so they can support you and any reactions for few days. A lovely chap I talk to at my infusions had to have this done as he has heart issues and he is fine. They also administer lots of anti- allergy meds and can infuse very very slowly over hours so that side effects are reduced.
Often surgery alone is all that is needed with bowel cancer so hopefully this is the case with you. It is hard to learn to trust again and I have to say the tales of misdiagnosis are quite high amongst those I've spoken to at the oncology unit. All I can say is that my oncology team have been no cause for concern - it's much more usual for the problems to be at getting your GP to do anything - once you are in the system , things seem to get done and people take your concerns more seriously x
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Dear Lynn you certainly have had a horrible time. I don't think your GP has been following the guidelines.
When you have another scan, could you take something to calm you. Generally though it is very difficult to keep calm and not worry, I try to distract myself by doing nice things.
Sending you hugs and all the best, 95% is good odds
Flutterbyx xx
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Aw Lynne I have no advice but couldn't ignore your post
I'm so sad for you ladies going through this ((hugs))
I hope you both have happy outcomes xxxx
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Hi Lynne888 - I did respond to you on the other thread - I do hope you get some better treatment soon. :hug: DG x
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Lynne :bighug: So, so sorry this has happened. As for your GP :bang:
I was given a tablet to take about an hour before my MRI to help me relax as I don't do confined spaces. Helped heaps.
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Lynne,
You'll be fine, most times a polyp is the way our bodies find to get rid of nasty cells. The bleed was a bless, it warned you (and should have warned your gp as well). If you need chemo, the colon is one of the best places to rapidly absorb it and that predicts good outcome. Take any drugs they offer you to feel more relaxed and good luck!
:hug:
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Thank you each and every one of you for your lovely warm comments. It's so lovely to feel supported! Dancing girl, I read your reply on the other thread and now on here. It's so very kind of you to offer support and I'm so grateful
Coldethyl I had no idea that the hospital did that if they were concerned so this is really informative information and again thank you!
The consultant suggested valium the night before and the morning of my MRI. I'm not sure it's the right thing, I'll probably just feel sick but I'll give anything a go as I really HAVE to do this MRI. There is an open one in Aberystwyth and also an even more all singing all dancing one opening in Cardiff next month but the consultant said they are not as good as a normal MRI - I would have thought it better than no MRI at all and would have happily paid to get that type of MRI but they wouldn't let me :(
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I had an MRI many years ago for possible tumour - it isn't the most pleasant of things but doable - I kept my eyes closed and focused on my breathing as best I could and managed it - the staff are aware that ii isn't nice and will be looking out for any signs that you are panicking etc. A Valium may help take the edge of it. Are you used to taking them as you might want to have a trial of one first as they can make you feel a bit weird which might add to your scan anxiety on the day?
As Megamind says, some chemo is actually just a tablet that you take yourself - Marras is just taking something similar for her appendix cancer as she struggled with the infusions as well as the tablets. They really are very good at juggling treatments to help you get least symptoms and best outcomes x
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Coldelthyl.. I've never taken valium. I was given a shot of something during the colonoscopy which didn't actually kick in until I got home and I just felt drunk. I couldn't stand and felt fuzzy and had to go to bed for 3 hours.. I'd rather be *normal* and try and manage but I don't know how it will go. Interesting about the tablets. I think my neighbour had them too as she wasn't good with the other stuff. I've read that chemo can be very resistant to colon cancer, a lot of different mixes of different types of chemo are often tried. I've read where people have done their stint of chemo only to find that the cancer is actually worse and the chemo didn't touch it. I think colon cancer is the worst for this and other cancers are not so resistant. We just can't help reading all this stuff can we!!!
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I haven't googled my cancer or asked for any statistical prognosis as I was told by a nurse on the ward that you never find the good news stuff online and a statistic isn't me.
Certainly those I've seen being treat for colon cancer seem to get a variety of mixes but this is true of many cancers as different regimes tackle different aspects of cell division and tumour formation. There are also lots of different types of bowel cancer and this will impact on success of treatment too. Try not to get caught up in the what ifs at this stage as you may not even need further treatment and I've learnt the hard way that you can't unsee or unhear less than positive stuff.
X
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coldethyl - great post - so true. Lynne888 - really try to resist researching bowel cancer online - like HRT, the horror stories tend to be highlighted. Once you've had the MRI and they have decided the best treatment, I would then have a few questions written down to ask the doctors or the specialist nurse and get the full truth from them.
We're here to support you so do keep us posted. DG xxxxxxx
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I would advise not to google or at least until you have all the test results back. You are only scaring yourself reading statistics etc.
It may be that the cancer was contained within the polyp but of course they have to scan and test you to double check that it hasn't spread. In the meantime, try to remain positive that it won't have spread and that the removal of the polyp is all that was needed. You may not need any further treatment.
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I haven't researched bowel cancer online, I have been on forums and read what others have said. I was actually told if I wanted to look online to go the reputable websites like cancer research uk etc. I think medial specialists know that most people will so advise as best they can.
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Macmillan and cancer research are both very good but it is still scary and generic information and forums tend to attract those struggling the most or the most unfortunate cases. I often read the blogs on Macmillan but had to be selective and stop when I realised I was behaving as if I had stage 4 incurable bladder cancer after reading one tragic tale. I have actually found talking to people with different cancer to my own at unit or on here and my diabetic forum better as you have shared experiences but aren't talking the same pathways. I know it's natural to want to be informed but I've learnt that actually what they know and can say for certain is quite small and only adds to the difficulty of coping with the uncertainty.
Try and focus on what you can control such as getting through the MRI - we all of us only have today really and living too far in future is as bad as dwelling on the past as we miss so much xxx
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As I said in your other post and which you acknowledged: keep in the front of your mind that it is the POLYP that is cancerous. When the Surgeon removed my breast lump he told me "I had in my hand what I expected to find" and I thought "Lucky you!" ::) ..... however, at histology the lump was found to have 'changes within' so lymph glands were removed which were clean. Preventative treatment followed.
I suggest that you make notes B4 the next appt with all your worries. That way you won't forget to ask the important questions to sort things in your mind, my Surgeon insisted on my having a list each morning when he did the Ward round: he was so thorough with his explanations that I didn't need the list ::). Some medics do not have the foresight to put themselves into where the patient might be: because they are dealing with similar situations they often don't make an effort to put the patient's mind at rest! So do ask.
Don't feel that you are being pushed into any procedure or treatment that you aren't comfortable with. Even if there is spread don't feel that you have to start treatment until you are ready to proceed. 24/hours of going home to think won't make any difference. Once I got into the swing of treatment and apps. I felt that I was tackling any problems sooner rather than later.
Do ask when you are at the appt. which support web-sites are the best to access, hopefully you will have a dedicated Nurse who you will be able to contact when necessary. If this isn't offered, do ask.
If you have delayed reaction to medication, ring as soon as you get the appt. to make sure that the Staff are aware. It may require medication the night B4 for example, or a different relaxant to what is used. I find Ativan good at relaxing me .... a small blue tablet and I was away, didn't care who saw my beautiful body ;)
:bighug:
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sending you my best wishes at this scary time x
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Really sorry to read your news. I'd be really angry to be kept waiting sooo long and then to find that it was cancer after all. My Aunt had similar with bowel cancer. I really hope that it is contained and you don't need chemo. Fingers crossed :)
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So sorry to hear but do not get too down, my mom had the same thing in her 70's. Had to have 2 colonscopies, only to be told, it was a polyp turned cancerous. Surgery to remove it and no further treatment. She is now almost 90 and has never looked back, just wanted to reassure you.
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CLKD you are always a light at the end of the tunnel, thank you! Also thank you to everyone else for you lovely thoughtful words and great support! Cassie, you have made me feel so much better. When you said your mum had surgery, was it just to remove the polyp or was it surgery after the polyp had been taken away and found to be cancerous? I'm so pleased it was a good result for her and fabulous she's now almost 90!!
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Keep posting!
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Hi Lynne, sorry to hear your story and the delays you've had.
I'm surprised/horrified that it was left so long before you got referred. I had some bleeding (after a gallstone attack) and doc made me do the sample test and one of those came back positive and of course I went into panic mode. However, the surgeon I was seeing for my gallstones was also a bowel cancer specialist. He wasn't that worried and said most serious cases don't have any symptoms and I do know a couple of people who have had it and had no bleeding, unusual tiredness was their main symptom. I had to have a colonoscopy but I was knocked out, thankfully all was clear and no polyps found.
Me being me, did lots of research, looked at lots of forums whilst I was waiting for the colonoscopy appointment - I try not to but you just can't help it! Polyps are very slow growing creatures and can turn cancerous and then if not caught early can spread. Although as the gut wall is fairly thick it's also a slow process. In fact a bleeding polyp is probably a good thing as otherwise some people aren't altered to the problem.
I do feel for you with the MRI but it's better to have one to be on the safe side. I was only in there 15mins and I didn't mind the enclosed space it was the clanking of the machine even with the headphones on. Then I missed what the man was saying plus I had to breath out and hold it which is a darn sight harder than breathing in and holding it! Then I laughed because the voice was a Lancastrian accent in Australia!
As CLKD says take a list of questions with you, I found that really helped. I have an enquiring mind so I like to know the ins and outs and how things work.
Take care as I know the waiting in between appointments and procedures is the hardest part. I won't say don't worry because you will as we all do but sending you a hug!
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Hi Lynne888 :)
Must be a worrying time for you- sorry.
My friend has just had her 10th chemo out of a 12 cycle for colon cancer. Throughout she has remained her glamorous self and worked up until Christmas when she was signed off as a precaution, as she works in Early Years and the little ones are 'proper germ factories' this time of year.
She has had excellent care and support by the team looking after her and has just gone with the flow of treatment explained to her at the start of it all.
I think you'll amaze yourself with the strength you can muster when needed, so try and keep strong as you face this challenge ahead of you. Good luck :bighug:
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Strength will arrive once you have the next tests/appt. ;). Also, if you feel supported by the 'Team', you will be easier of mind; it's the in between appt. times!
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I have nothing to add to these posts but wanted to give you a hug :hug:
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Ive nothing to add to the excellent advice you've already been given Lynne by the other ladies. Just sending you a gentle hug. Take it one step at a time. x Put on your big girl knickers, take a big breath and give the MRI your best shot :)
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Hi Lynne
I am sorry to hear what you are going through and I just want to add another success story for your further encouragement I have a friend who had bowel cancer over 17 years ago. He had an operation to remove the infected part and didn't need any other treatments. He is still going strong now at the age of 77.
Sending good wishes and wishing you well x
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Thats really heartening news Autumnlady, thank you! x
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How has today been Lynne888?
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CLKD... I'e been OK, the thing is, I feel absolutely normal and at the moment I'm just doing the things I always do, go shopping, dog walking etc. The problems start if I need treatment because it zaps the life out of you doesn't it? People always look fine before they start treatment and then go down hill quickly for a while. I haven't been thinking about quite so much (although the middle of the night is a real pain as I can't sleep and I go over everything in my mind - over and over and over.. ) I forget about it for a few hours and then it comes back to me and I have a real panic but I keep telling myself to worry about it when it happens. On saying all of this, I might well have myself dead and buried tomorrow! There is no continuity to it! Thanks for asking you lovely woman you xxx
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Your brain will be whizzing round, of course it will!
Did you get a :scottie: in sunshine today?
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No! It pee'd down all day!! A beach walk is not so lovely with sand blowing in your face!! :-\
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Mum was the same as Autumnlady's friend, she had an op to remove the bit that had turned cancerous, no bag after, they just did a kinda bypass and joined the 2 bits of her colon again, was home within a week and has never looked back.
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Cassie, you make me feel a lot more positive thank you for being kind enough to try and put my mind at rests.
Teresa, I'm so pleased your chemo was successful. 33rd infusion? I had no idea it went on that long :-\ I hope you are now cancer free and living life to the full xx
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Little steps. Make a list to take to the appt. ;)
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Cassie, you make me feel a lot more positive thank you for being kind enough to try and put my mind at rests.
Teresa, I'm so pleased your chemo was successful. 33rd infusion? I had no idea it went on that long :-\ I hope you are now cancer free and living life to the full xx
it's a typo Lynn- panic not. I know Teresa only had the normal number which is around 6 or 8 for most cancer types as far as I can tell- my stoma nurse said it's usually about 26 weeks for bowel cancer which is bit longer than the one I am on for OC.
Everything you are feeling is normal for an abnormal situation- in the early days I was too numb to think but gradually I'd wake up in middle of night and it would hit me or every morning was a bit like groundhog day as I'd wake up , stretch then think " oh hell I've cancer."
You do slowly find a new normal and it isn't always on your mind x
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coldethyl, you describe everything I am feeling. I forget about it if I"m chatting to friends and then it comes back to me when they have gone. I wake up fine and then a few seconds later I get this dread and think 'something major is wrong' and then it all comes flooding back to me - I have cancer. Its just awful. Then I have the nights I can't sleep at all and worry about the most ridiculous of things. Even being cremated ;D ;D ;D What the hell is wrong with me!!!!
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So that's the Service sorted then ::) - now get on with making that list and keeping in touch ;). Sorry, I can't remember when your next appt. might be scheduled for :'(
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coldethyl, you describe everything I am feeling. I forget about it if I"m chatting to friends and then it comes back to me when they have gone. I wake up fine and then a few seconds later I get this dread and think 'something major is wrong' and then it all comes flooding back to me - I have cancer. Its just awful. Then I have the nights I can't sleep at all and worry about the most ridiculous of things. Even being cremated ;D ;D ;D What the hell is wrong with me!!!!
There's nothing wrong with you - all those feelings anc thoughts are normal for someone given a life changing diagnosis - you'd be more abnormal if you weren't experiencing them tbh. I remember my link nurse sling me if I thought I'd get better and I said I'd already picked my hymns- she gave me such a look and went on and on about being nowhere near that and I thought she just doesn't get it - how your mind instantly wants to make those leaps - sometimes going to the worst place is a form of self protection as if you are challenging yourself to see how you'll cope - keep posting - it does help to voice your fears x
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Also if the Service is sorted it can be put away until absolutely necessary!
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CLKD.. No appointment until the MRI date comes through. Thought I'd answered you, I do apologise, it couldn't have posted!!
Things keeping me awake last night were:
Will I feel anything if I am cremated ???
Will my husband re-marry and if he does will she be blooming well thinner than me :'( :( >:( (I hate her already!)
Will she use my AGA - I mean, I have to draw the line somewhere, she can have my husband but I'll haunt her if she has my AGA :lol:
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Ha ha, you will be ok Lynne ;D
Your have a fertile mind, start writing a book! The idea has crossed my mind... I'm on chapter one, not sure if it's going to be mystery, terror or suspense >:D
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You won't feel anything after you die. The Spirit will have floated away ...... [long story short ;)].
I don't worry about Himself re-marrying, I think he'll be too busy fishing, walking, photography, house-work ;D
We don't have an Aga to worry about ...... and as I don't cook it won't be an issue :-X
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Oh Lynne - been there done that . I have my ethyl with a Thai bride enjoying my pension in a camper van. Some days I think maybe he could get two for price of one and fit junior up as well as he's not very forward on the woman front and I worry who'll do his washing etc.
It's only natural to wonder and worry about stuff but actually worrying won't change anything just make things less enjoyable in here and now. I had a psychologist 's session today and we talked about doing things that are helpful and sometimes our imagination isn't at all helpful as it runs away with us. Some day I can joke about my husband's life without me and that is ok but when I start to overthink it and have junior disinherited and a family of other children in my home, I know it's time for a bit of self compassion and a talking to. X
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Have you talked with Mr Ethyl? When I ask what himself will do if anything happens to me, I get a variation of answers ::). He's no help in putting my mind at rest :D
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Have you talked with Mr Ethyl? When I ask what himself will do if anything happens to me, I get a variation of answers ::). He's no help in putting my mind at rest :D
He just says I'm going nowhere . Tbh why shouldn't he remarry ? I don't want him lonely and old. It's the practical stuff we need to sort out so our son gets this place and not any future wife and we've decided that cancer or no cancer, it's a good time to rejig our wills and arrange enduring power of attorneys.
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Which reminds me - still waiting to sign our updated Wills ....... must make another call to the Solicitors >:(.
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Mine always says he's had enough with the one he's got so he's not after another woman! lol! On saying that, we already have a VW campervan and I wouldn't be happy if he bought himself a wife and took off with her in the van!!!
I feel sad if something was to happen to me because hubby took early retirement last year at 56 and we moved to a bungalow by the sea (to be by our daughter and grandchildren).. we worked until last March so we have hardly had any time to enjoy it. We've been doing the bungalow up and so haven't had weekends away as we planned yet. We walk on the beach most days though and try and enjoy our environment.
I'm more worried about the dog and cat. If I could outlive them I could cope!
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My mother in law had a right hemicolectomy after a diagnosis of bowel cancer a few years back in her late 80's. She recovered well and has had no further problems.
We also have a friend in his 50's who had the same op in his late thirties and he has had no further problems either.
Human nature makes us fear the worst and has us turning over awful scenarios in our minds. Maybe we need to go all through that before we can put those thoughts away.
Ariadne xx
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Ariadne.. I think it's a safety mechanism. We have to fear the worst and hope for the best otherwise, if we get bad news it shocks us even more and it's difficult to deal with. It's great to hear about your mum in law and your friend. These stories really keep me feeling positive! x
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Mine always says he's had enough with the one he's got so he's not after another woman! lol! On saying that, we already have a VW campervan and I wouldn't be happy if he bought himself a wife and took off with her in the van!!!
I feel sad if something was to happen to me because hubby took early retirement last year at 56 and we moved to a bungalow by the sea (to be by our daughter and grandchildren).. we worked until last March so we have hardly had any time to enjoy it. We've been doing the bungalow up and so haven't had weekends away as we planned yet. We walk on the beach most days though and try and enjoy our environment.
I'm more worried about the dog and cat. If I could outlive them I could cope!
I'm glad we retired nearly 4 yrs ago from farming as we've had a few years of doing nice things. I'm 51 next month and am sad that I might not get to have the life after child rearing and working that I thought I'd have. my MIL died at 62 not long after retiring from cancer and I always felt sorry that she had got a bad hand - I may get less but I'm determined to try and enjoy life now whatever happens. A lady at a and e yesterday was telling me about her friend who was in rude health last Monday evening and dead a few hrs later so we none of us know what will happen.
I know it feels like if you worry you'll cope if it happens, but actaully that's a bit of wonky thinking if you read psychology stuff. It just makes you lose enjoyment of now and only if it is practical stuff like sorting will out etc will it take any burden off the future nasties. All my life I've worried about getting ovarian cancer to the point I'd switch a programme off or throw a newspaper out if I saw the words - part of me thought if I thought I'd get it, of course I wouldn't as how likely would be getting the thing I feared the most? Didn't work out well for me as magical thinking is just that- useless and time consuming and as rubbish as the magic in Harry Potter. X
X
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coldethyl.. coping is a strange thing. Last year when I thought I had bowel cancer I braced myself for bad news and was told I was cancer free. I let my guard down once I knew this so finding out now that I DO have colon cancer has knocked me for six because I wasn't braced for bad news.. I guess we are all different. I won't change now whatever, I've been this way all my life! My husband copes by burying his head in the sand and not wanting me to talk about it.
I'm glad you have had 4 years of early retirement! It's not long enough of course but hopefully there will be more to come :)
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Oh Lynne, I think you are coping quite well considering that you were told not to worry and then the opposite!
But the crude truth is that all of us can get cancer anytime even if we have been cleared from a previous one, there's no guarantee another won't strike again, it's all about family history, environmental risks and probabilities, really.
If you take the advice given from coldethyl, Teresa, marras, who are dealing with cancer, then you shall have a great advantage to win the battle. The war is another matter, we all know that all we can do is fight our battles, but to win the war is just out of our hands, and that applies to everything in life.
Maybe your husband is avoiding the issue because he really loves you and it's hard to bear seeing you suffering. It's a process and it takes time, patience, clear thinking (which is impossible now) and much, much love for himself as well.
Anyway, I feel you will get out of this stronger and ready to live each second with less fear, worry and distress. That's my feeling and sincere wish.
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Menomale... My husband refuses to fear the worst until he is told in stone cold facts! His glass is always half full, mine always half empty!! I agree with you 100%.. the battle scars are the ones we carry throughout our life, but as you say, when we get to full on war, that's a different thing altogether. I"m trying to enjoy these days where I have nothing going on.. waiting is a pain, but things may never be as calm as normal as they are now. I'm just off down to the beach.. it's a beautiful sunny day and life is worth living!
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sending best wishes to you both coldethyl and Lynne888. I don't feel I have the right to comment as I have no experience of these issues but I wish you and your families both well, physically and emotionally.
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Yes we all do cope in different ways - just remember that you are facing a difficult time and if you wear yourself out now worrying that if you do need further treatment, you will already be exhausted. It's important to try and live as much in the present as possible I think as the future for all of us, not just those facing serious illness, is uncertain.
Hopefully your scan comes through soon and you will then have a clearer picture of where you are at. A friend recently was diagnosed with bowel cancer and surgery alone was enough though he did have to have a temporary ileostomy whilst bowel healed, now reversed. I ended up with a stoma after my tumour surgery and it isn't the worst thing ever so if you've been googling and scaring yourself over that , don't worry. I have found that you do cope with whatever is thrown at you, not always without help but you cope. xx
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Well I started a blog. One of millions done by people with cancer. No one will read it but it might help me get through this.. I haven't checked spelling or grammar but if you want a read of my first post, see if it will open here:
https://whencancercomescalling.blogspot.com/b/post-preview'token=nHkvIFoBAAA.d71OfQ4BReELad_QLvUyT4XNb38him-BJoO0e4zxIIHY_QbKvPAjADRRVeOFBcLeCar5LX1XXH9HBLF9qgYiSQ.mKzxnSI_b7BRavwUs79laA&postId=4535865052938008961&type=POST
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That's a good post Lynne. I do feel sorry for you being told it wasn't cancerous and then it was. I can quite understand how you now have no faith in the Dr's.
Because you said you didn't really take in all he said once you heard the word cancer. Why don't you ring his Secretary and ask to speak to him again over the phone and understand things a bit more?
I will keep my fingers crossed for you that it hasn't spread and you need no further treatment x
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Hi Lynne,
Just read it, you're a damn good writer (as I already suspected). I couldn't access the comments though, so I just want to say that to have no faith in people's words and to be angry would be my reactions too. As babyjane has pointed out, I'm not in a position to offer advice, but I'm here to read, listen, chat, take your hand (virtually, unfortunately), send a big hug, whenever you ask.
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Nice read Lynne!
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Oh Lynne, my heart goes out to you, what a carry on, its So unfair, you did everything right at your end, but sadly the outcome is not the one you were told to expect ! You are really gifted at writing, its like you are speaking personally to your readers and Im sure your honesty, bravery and humour will help many others facing similar diagnosis and subsequent treatment.
I wish you well with all my heart and hope your results are the best that can be hoped for
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You're all too kind.. I write like a child. This is a better link if you do want to leave a comment and I'd love it if you did!
http://whencancercomescalling.blogspot.co.uk/
I Did speak to the cancer nurse after I had spoken with the consultant and she filled me in on the bits I'd missed!
Thank you all for your continued love, hugs and kindness... you're SO lovely! xxx
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well done for writing it down. It can help. I can understand your frustrations and my own diagnosis wasn't that straight forward as my link nurse misread my report and told my husband that it wasn't good news that my womb cancer had spread- it hadn't - I had two primaries, one of which was the on my ovary and that had shown biopsy mets on other ovary. They are no infallible and no test is either- my ct scan showed no signs of anything other than mass on ovary but they do only show tumours bigger than a cm generally, my surgical reg said there were clear spaces between my ovary and bowel and I'd not need bowel prep or to worry about surgery- I ended up unprepped and needing emergency bowel surgery as tumour fused to bowel wall!! It is easy to feel bitter and angry towards them- it is a normal reaction and I know I have taken an almost irrational dislike to my link nurse and my surgical team. You need something to focus all that hurt on so why not? All I can say is that the oncology lot have been better.
Keep writing. xx
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Hi Lynne - I did comment on your other thread but somewhat belatedly also doing so here - just to say again so sorry to hear about your diagnosis, and wishing you well in your treatment - and hoping that news re the biopsy will be positive ie the cancer is limited to the polyp alone.
Take care :bighug:
Hurdity xx
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Hi Lynne, first of all I'm so sorry to hear all you have been through and the delays in getting the diagnosis. As has already been said, CT scans only show anything that is over one and a half centimetres and I had an all clear CT scan but they found secondary cancer on my rectum when they opened me up. Also, I had a very painful colonoscopy as well and yet there are loads of people who just sail through it. Although my cancer is appendix adenocarcinoma, because it is so rare, there isn't a chemo specifically for it, therefore I'm having chemo for colon cancer. I've already had extensive surgery where they removed all the cancer and I'm now having belt and braces chemo. What I can tell you is that it isn't as bad as you think and you will get through it. It isn't as harsh as chemo for breast cancer. They give you drugs to deal with side effects and look after you really well in the oncology unit. If your cancer is contained, however, you may very well not need chemo and they may just remove part of your bowel which sounds horrific but actually isn't as I've had two large bits of mine removed and here I am six months later eating everything and having better bowel movements than I've ever had! Sorry if TMI! The waiting is the worst of it and once things get underway you'll cope admirably simply because you have to. Take comfort and support from your family and friends, beware of positivity bullies, rant and rave and have a good cry and then take one day at a time. Everyone on here is fabulous and a great support. Big hugs.xx
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MArras, I love the phrase " positivity bullies." It is up there with the whole "fight" cancer language that deeply offends me. No other illness seems to attract such language - no one told my father in law that he had to fight his altzheimers , yet even my gynae link nurse asked me if I was going to fight it!!!
Lynn, as Marras says, you might just need surgery and nothing else but even if you do need more, you do find the strength to cope - and people surprise you in their support. It doesn't always come from where you expect it either. X
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Excellent post Marras.
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Brilliant Marras (sent you a PM). Agree regarding Positive bullies coldethyl... if only one of my friends would say 'I know you're terrified and I'm damn well terrified for you' it would make all the difference! Im even more bothered now I know that the CT scan won't have picked anything up under 1.5 cm. I'm probably riddled. It's a week tomorrow since I was told.. still no MRI appointment. I shall ring them tomorrow afternoon if I get noting in the post.
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Try not to worry. I think ct scans do pick a lot of small stuff up it is more that they can't properly distinguish what it might be when it is very small.
I find the whole positivity stuff annoying tbh . I wasn't a positive person before this so why would I be now? I prefer to talk about being realistic and focussing on one day at a time. X
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..... do give them a ring. Are you able to take a cancellation at short notice?
....... and don't get me started on "Are you going to eat more healthy foods now?" ......... :kick: as a recovering anorexic I knew exactly what I put into my gob ::) and as we are family who have grown own fruit and veg. for over 100 years and counting :-\ ....... that is on both maternal and paternal ......... I had a knowledgeable background of healthy 8)
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..and those that ignore you because they don't know what to say! Just say *I don't know what to say* and then move on and talk about normal stuff!! I've put this on my blog! I'm going to enjoy that blog! I don't need to have a filter!!!
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..and those that ignore you because they don't know what to say! Just say *I don't know what to say* and then move on and talk about normal stuff!! I've put this on my blog! I'm going to enjoy that blog! I don't need to have a filter!!!
Or people you don't really know that well asking you " what's your prognosis?"
I've never asked my team as I wanted to get through chemo believing it is going to work as its hard enough to do without thinking what's the point. I know enough for me , yet a friend told me I owed to my family to find out exactly - you soon learn with cancer there's no exact and your oncologist can only talk in general figures which are by their nature at out of date as survival rates move with new treatments. Reoccurrence is possible at any time and I've met people on unit who have been cancer free for 22 yrs and now are terminal so none of us are guaranteed a cure, just remission. I was so angry as people seem to think that they can say what they like to you - including the " you might get hit by a bus tomorrow ." Yes , I might, but I am not facing that quite as up close as possibly not making it through cancer.
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Lynne, you should be on the 2-week rule so should be seen within that time otherwise, apparently, the hospital gets fined.
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Yes I can go at short notice if a cancellation comes up.. I shall ring later if there is no appointment in the post.
Agree coldethyl about people you barely know wanting to know all the details! A new woman moved in over the road from me in October. She actually came over for the first time while I was in the middle of my first Prep :-\ I had to tell her I was doing the prep because I didn't want her in the house! She then asked me everything and said 'is it cancer'.. I really took a dislike to her. I just kept thinking, I don't know who you are but you want my life story'!!!!!
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People don't know how to react, don't know what to say so they think they can say the first thing that comes into their head. It's the same with a bereavement.
thank you for these recent comments from your own points of view. A neighbour stopped me in the street yesterday to tell me her husband has been diagnosed with lung cancer. I just listened as that's all she wanted from me.
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Hello ladies.
Just catching up with this thread and wanted to send hugs to you Lynne88 and the other ladies who are having treatment.
I think our sensitivities change over time. When my neighbour was first diagnosed with bowel cancer she told me while we were standing in the street and as I was shocked and saddened to hear her news I welled up a bit. She sternly told me to stop that as " there had been enough tears". Now she readily talks about her illness and the treatment she had. I assume she is more relaxed because it is in her past and she isn't dealing with it every day, plus of course she is now fully recovered and feeling well. All any of us can do is be kind and caring to each other and if we do say the wrong thing we can always apologise and start again!
Take care all.
K.
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Love Marras's comment and the phrase 'positivity bullies'. My Mum lost the plot over this very thing! I won't tell you exactly what she said to one nurse who kept chiming on at her, as it was a bit sweary! My Mum WAS positive, but wasn't prepared to put up with glib comments from other's who hadn't walked even an inch in her shoes.
Sending much love to you, Lynne (and of course you, Marras and Coldethyl). xxxxx
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Things are going very slowly since being told I had cancer on 2nd February. I went for the MRI and managed to do it this time. I was expecting a phone call the following week calling me in to see the consultant.. that's how it's worked up until now anyway. The call didn't come so I rang the cancer nurses and they said the MRI scans hadn't come back yet. They said they would chase it up and I would definitely be on the list the following week. I waited yesterday for the call. It's not easy because for a day or so beforehand it's easy to imagine every scenario known to man and believe me , I DO imagine them all. Anyway, the call didn't come again. I rang the nurses at about 4.30PM saying that I was expecting a call only to be told that my case hadn't been discussed again and that the MRI scans are often passed to outside agencies to be assessed and mine hadn't come back.. they didn't even know where they were. I'm not going to lie, I feel very let down with the whole situation from my GP not taking it seriously and waiting 6 months to see anyone after having blood in my poo to being told in November I DIDNT have cancer only to be told in February that I did. I'm finding it all a bit much at the moment and I keep thinking that things could be getting worse with all this waiting around. Anyway, I await another call today but it won't be to see anyone as they only have the meetings every Wednesday so it will be at least another week before I get to see the consultant again :(
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I'm not surprised you feel let down Lynne, this is AWFUL. Being told you have cancer is everyone's worst fear and then to leave you hanging like this is well..... beyond words
And also given the long wait for the tests in the first place byvthe gp then the wrong diagnosis I'm gobsmacked I really am
Can you complain ? PALS are apparently good at hearing your concerns too. I hope they step up theirs patient care with you pretty sharpish to a level you so deserve
Big hugs xxxx
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I'm reluctant to complain at the moment because I don't want to pee anyone off who may have to treat me. I might make things worse!
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Lynn, you don't have to lodge a complaints exactly just discuss things with them - pals or here in Wales it's patient support services. You've every right to chase things up and I know myself, things get missed or lost. Why not make the phonecall or email them as you need reassurance. They won't be able to give you clinical information obviously but maybe can reassure you that everything is in order.
Thinking of you, difficult enough - you do not need any unnecessary stress and anxiety.xx
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OMG Lynn, this is terrible. You are being so patient, I know I definitely wouldn't be. The situation is NOT acceptable. I think you need to start making a fuss, you have been told you have cancer.
By making a fuss it surely cannot makes things worse, they have already made things bad for you.
Please start making phone calls and tell them exactly how you are feeling.....
What disgusting treatment......only my opinion of course. 💐💐💐💐💐
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Contacting PALS isn't complaining. The people in the Office liaise between patients, relatives and staff and were VERY helpful when I had recent communication difficulties when Mum was 150 miles away, in Hospital, hallucinating so that I didn't know which way was 'up'!
This is not the best way to treat anyone waiting for diagnosis and a treatment plan, however, it is the end of the Financial Year >sigh<.
:bighug: - give PALS office a ring and ask if they are able to find out where your Scans are. I know when Mum was in Hospital 3 years ago her late-night CT scan was 'read' in Australia ::)
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I don't see it as complaining about those treating you- I imagine they are as frustrated with the system as you are- you can just outline what has happened and say that you feel they ought to review their arrangements for handling scans and notifying patients- if they had said that it might be a few weeks before you heard then you would not have been up and down so much , but they didn't and gave you the expectation and assurance that it was going to be within a give time frame.
PALS would be a good place to start - you don't need to go in all guns blazing just a calm explanation of your problem. xx
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So sorry you're having all these problems Lynne. Nothing to add except PALS is a good way to go. Sending big hugs.
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Or ring the Consultant's secretary: "In order to stop me worrying any more than I am already, having been told that I have cancer, could you chase up my scan results please? " [we don't bite, honest ..... ]
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How are you Lynn?
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I can really relate to this. For just over a year I've had problems with my pancreas - started with excruciating pain that landed me in A&E but nothing specific could be found. Thankfully I have a very switched on GP who sent me for an endoscopy (horrific but over quickly) which was clear so the consultant who did it suggested I gave an ultrasound to check my gallbladder. Again my GP pushed this through and it was discovered the head of my pancreas was inflamed (suspected pancreatitus). I was put under the care of a specialist consultant at the RBH in Reading and had two CT scans, two specialist MRIs and an EUS plus innumerable blood tests. Always told I had suspected pancreatitus - bloods only ever showed inflammation and slightly elevated blood sugar. Always told no cancer. This carried on till Feb this year when I suddenly became very jaundiced and had indescribably bad itching and ended up in hospital where a stent was inserted in my bile duct and a biopsy taken. Well guess what? It's cancer. A big 5cm tumour and borderline operable. Things have moved incredibly quickly since the day I was told (22 March). I'm having a Whipple procedure on 13 April at the Churchill in Oxford - my only chance of a cure. I may have to have mop-up chemo. The op has a three month recovery and they remove most of your biliary system. I'm a fit, healthy 52 year old (apart from the cancer!) and I refuse to even contemplate not beating this, whatever it takes. Maybe I'm in denial - I know what people think when you say you have pancreatic cancer - but at least they're going to try to save me. At least I know what I'm up against after a year of not knowing. My poor husband only found out the week before that his mum has bowel cancer (she's had her op and is doing well although doesn't know yet if she needs chemo) so he's the one I worry about, not me. The thought of my massive op in three days time terrifies me but I have no choice and I will face whatever is to come one day at a time.
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Sorry to read that Nikki - ii was diagnosed last year with ovarian cancer and had radical hysterectomy - during op ended up with stoma as tumour fused to sigmoid colon- just finished chemotherapy. There does seem to be a hierarchy of woe when it comes to a cancer diagnosis - I've had several " oh my god-s" on the oncology unit from those with the likes of breast cancer - all I can say is that everyone's cancer is unique and no one can say how it will pan out for anyone- a friend has a friend who has just gone five years with pancreatic cancer and look at Wilko Johnson from Dr Feelgoid who had some radical new surgery - anyway wishing you well with the operation and any subsequent treatments x
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Oh gosh Nikki, that must have been a massive shock after having all those tests. If the tumour was that big how on earth did the MRI's and CT's scan miss it? It's a bit worrying...... I had gallbladder trouble and had MRI and CT and they didn't find anything else but now it makes you think!
It sounds like you are in good hands and thankfully you've been and had all the scans etc, I'm sure some GP's would still be dismissing it as a touch of gallbladder problems and just leave it.
I wish you lots of luck and fingers crossed all goes well with the op. Please let us know how you get on, we'll be thinking of you. Take care
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Sometimes things just don't show up on scans though you'd think a 5cm tumour would - it is possible that it was smalll at time of scans - saying that, my mum's cousin's husband was recently diagnosed with pancreatic cancer- nothing showed on scans and biopsies clear but they've diagnosed it on bloods alone
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Nikki, theres not a lot I can say that hasn't already been said other than your positivity shines through your post and I pray for a good outcome and that the recovery phase goes well . Three months out of your life is nothing compared to living the rest of it another good many years ! God Bless and this time next week it will be all done and dusted x
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Dear Nikki,
I couldn''t read your message and not comment. I am sorry to hear you have cancer, but want to reassure you that you are being treated in one of the best cancer centres. I was diagnosed with breast cancer two years ago, chemo, mastectomy, radiotherapy, only to be told it had returned within a few months. Treatable but not curable (another Linda Nolan!). I feel so lucky to live near the Churchill and the Maggies Centre there has been such a support.
Best wishes for Thursday
Love
Lindy Lou Lou
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wishing all you ladies sincere best wishes for your ongoing treatments and the future. You are an inspiring bunch and such a support to each other.
People who pooh pooh online groups ought to see the support and caring that goes on in here :hug:
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Well said BJ! Group :hug:
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So sorry to read your post Nikki and what a long way you had to travel to get to your diagnosis. As someone diagnosed with appendix cancer last July and has had two major ops and chemo and am now in remission, just like to say that every cancer is different and treated as such. All the very best of luck with the op. As has been said, you will get a lot of kindness and support from this forum. Stay strong.
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Hello everyone and thanks for your kind messages. Well, I had my op nearly two weeks ago and am now beginning my recovery at home. It went really well (although I feel like a filleted fish!) and I made such a good recovery that I was let out after five days! Initial report is cautiously optimistic in that it looks like they cleared out the tumour and can't see cancer anywhere else but I won't know my results for a couple of weeks yet. The Churchill is an amazing hospital and the care was out of this world.
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Great to hear that your op went well and that recovery had been good - fingers crossed that your biopsy results are equally as good news though don't be too surprised if they do offer some form of post op chemo even if they appear ok as it's far better to mop up when it's only tiny cells that tests can't detect than a tumour later on - wishing you continued better health x
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Really pleased to hear you are doing so well, NikkiDUK. Sending you my very best wishes. xxx :foryou:
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I had radiation to catch any floating cells ......... let us know how you progress! :tulips:
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Hi NikiDUK
I'm so pleased to hear the op went well and it sounds like you are recovering well! Fingers crossed the rest of the treatment goes well. Keep us posted how you get on!
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How is Lynne 888? :-\
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CLKD, I did ask that a while back but she didn't respond but does seem to be logging in each day. Maybe she doesn't feel she can talk about what is going on with her?
If you're reading this Lynne then I hope you are OK.
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I agree - let us know!
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Lynne888 does have a blog she has mentioned before:
http://whencancercomescalling.blogspot.co.uk/
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Thanks Jenna, I must have missed that.
Just read the blog, glad to hear you don't have to go back for a year Lynne and wishing you well.
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Hi NikkiDUK
I've only just read this as I've been away but just wanted to say I'm so sorry to hear about your diagnosis of pancreatic cancer and that it took such a long time to find, but so pleased that your op went well.
Wishing you all the best with your ongoing treatment and recovery. :tulips2:
Hurdity x :hug:
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:thankyou:
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A quick update as I've hijacked this thread enough! Follow-up couldn't have been better - tumour self contained with clear margins, no lymph nodes involvement and no secondaries despite being over 7cm big! Such a relief. The Churchill have recommended mop-up chemo just to be sure there are no microscopic cells left lurking which I will probably do, as insurance (as much as you can be insured against pancreatic cancer) - I want to do everything I can to beat this thing. I've been incredibly lucky - the Churchill said it was a perfect outcome. I can't quite believe it. It's been such a rollercoaster, physically and emotionally. Thanks for all your kind thoughts here. As if menopause wasn't bad enough to cope with as well!
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That's really good news - I had mop up chemo ( I think the posh them is adjuvant - I preferred to call it Hoover chemo) after my hysterectomy for ovarian cancer. Still no guarantees as you say, but at least you feel as though you've done everything you can - if you want to chat about chemo feel free to PM me or there is a thread on hear called update to breast cancer where three of us that had chemo for various things chatted through our treatments. I won't lie and say it's a breeze, but it was not as terrible as I'd expected and the oncology team do their best to ameliorate the side effects as much as possible. X
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Hi NikkiDUK,
I'm so very pleased to hear your wonderful news and thank you for letting us know.
Here is the thread coldethyl just mentioned:
https://www.menopausematters.co.uk/forum/index.php/topic,32792.0.html
Wishing you all the very best. xx :foryou:
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Well done both of you! :bighug:
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As an aside - if the RSPCA won't 'act' then contact the local Vet. practices that deal with horses, our Surgery has a dedicated horse clinic facility. It's like dogs being tied up, as long as they have access to water and a shelter it's not seen by the RSPCA as 'cruel'. However, this particular charity appears not to prosecute unless there's something in it for them, i.e. publicity or funding. The Government are thinking of removing their powers to prosecute unless it's animal welfare rather than infiltrating local hunts!
What happened to the horses? If the owner approaches say "Oh I'm so relieved to see someone, I am worried that they aren't getting enough to eat in the cold/wet/hot sunshine [as appropriate]. What can you tell me about these particular ponies, it's a long while since I got the chance to ride". I think that the owners of tethered horses have to visit twice a day ........
So pleased with your news too Lynne! Hopefully the fear of the cancer returning will ease, the times I felt anxious was about 2 weeks B4 each follow-up appt., in-between because I had done all the Consultant and Oncologist had suggested I 'got on'. Keep up with the blog now that I know where it is ::)
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Nikki, great news, so glad that you are doing so well! Just take care of yourself!
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Lovely to hear this good news - keeping my fingers crossed it's as good for my friend :)
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What a relief for you Lynne, it's much easier when you know what you are dealing with and have a plan ! Take care and rest up !