Hi Everyone
Ashamed to say I’ve neglected the forum as ‘I was better’! Anyway I’ve had double mastectomy in March 2006, immediate re-construction; Chemo: and on Arimidex since end of Chemo.
Pre Xmas 2007 and since I’ve had bad back; feel very tired; weepy; can’t sleep; the odd stabbing pain in my right side. I’m scared to go to Dr and ask his opinion.
I really have been such a ‘good patient’ previously but, think my fear is now taking over any rational thinking.
I was due to have bowel resection in March 2006 and then this ‘problem’ took presidence. Chemo seems to have helped with the Chrohns problem.
Husband had his marching orders in July 2006 - was long overdue but this brought me to my senses in what I did/didn’t want in my life and what I was/wasn’t prepared to put up with any longer. I have constant money worries to add to all of this stress. Sorry to be such a whinge but I need to air all this somewhere and really don’t want to have to utter my fears out loud yet as it might make it real? Sounds mad doesn’t it? Thanks for listening.This forum was so great for me initially. Thankfully it’s still here for me now.
Just wanted to add my next appointment with the oncologist is May. Seems ages off. Also my left arm lymphedema probs seems to be worse at the moment.
My saline implants are uncomfortable too - gosh how much more can I moan about- maybe I’m just feeling depressed 'cos of the time of year. Perhaps I should just shut up and put up?!?
Hi Pinkerbell,
Its good to hear you have a little rant, it reminds us were not all perfect and the blooming mask can slip.
I love the term giving your husband his marching orders. Its amazing how we refocus our lives isn’t it?
I am still in a little bit of a fog but then I am having treatment, I know once it has stopped I can think straight again.
Take care
Carol
Hello Pinkerbell
Sorry to hear that you’re worrying at the moment. I think all of us on here understand about the fear and about not wanting to utter it out loud yet.
I had stabbing pains in my right side a few months ago and the more I worried about it the worse it got. I saw the oncologist and had an ultrasound which revealed nothing. I’ve had IBS for years and the pain is almost certainly the IBS playing up. Is it possible that your pains could be your Chrohns?
But I don’t think you’ll feel better until you’ve seen someone - May is a long time to wait. Why not at least talk to your GP.
Take care and let us know what happens
Anthi x
Hi pinkerbell,
Please don’t wait til May, make an appointment with your GP, its probably nothing but please don’t feel you aren’t a good patient by making an appointment with them, thats what they are there for, but they can’t treat you if you don’t go along to see them.
Take care,
Allie
Hi, Pinkerbell
Sorry to hear of your problems, of which you have a lot. I’m new on the site so am still finding my way around. There are so many categories and then threads etc. So much to do and so little time!
I agree with Allie, I think you should either see your GP or bring your hospital appointment forward. You’ll have more peace of mind. My next appointment was at the end of this month, only two weeks away (I last saw him 3 months ago) but I’ve been feeling so rotten the past couple of weeks that I phoned up this morning and I’m going to see the onc on Tuesday. It’s only a week early but I feel tons better already.
Know what you mean about giving your husband his marching orders. I did the same to my sister. I need peace of mind, as we all do at this time, and, selfish as it sounds, I have to think of me and whose company I want to be in.
Good luck, and best wishes to everyone xx
Hi Pinkerbell,
I agree with the girls…
get to your GP and get your complaints looked at…
If I am worring about something and don’t act I seem to get lots of other niggles as well.
It is always great to have a rant and I hope it helped, we all do understand…
Let us know how you get on…
Hi Everyone
Aren’t you all fantastic! You made me feel better already - and obviously I need to see sense and get my appointment brought forward and/or see my GP as well.
GrannyScouse - loved the fact that you too have decided to think about yourself. I do feel all of us who have been effected by the physical illness also have a major emotional battle as well and, hard as it may be at times, some dead wood has to be pruned back! How bad does that sound!!!
The pains could be from the Chrohns but they are quite different from those I’ve experienced with this previously but, then again my whole body is different now isn’t it? Not only the surgery it’s the effects of the chemo too I expect.
Anyway I will let you all know what happens and you are all so fantastic -
Love to you all xx
Hi Pinkerbell,
I think I finally learnt that its actually ME who had to control my treatment instead of reminding the onc. “arnt i supposed to have another scan etc” There are times when I just have had enough and want to forget that I ever had cancer!
take care and keep fighting, and good on you for doing some pruning!
love suzy
Hi All
Just checking in to let you know that I’ve taken control (thanks suzy) and I’ve spoken with my Breast Care Nurse today. She rec. I see my GP next week (booked for Monday am) and get some sleeping tablets first of all to get me out of this zombie state! Then she has brought my onc. appointment forward to next Wednesday am and also she will see me either before or after that clinic to have a chat.
My next question- being as I’m on my own so to speak - (I’ve a gr8 son aged 19 and fabulous daughter of 27 with two adorable children Francesca 4 and Joshua almost 1year old) they are my reasons for being - but I’ve also 2 brilliant sisters. I know how can I say I’m on my own - but even so - I don’t want to worry them but, I do admit to being more than a bit worried about going to see the onc next week. Honestly this is not like me. Really can’t get my head around why I’ve suddenly had this attack of fear and dread! I hate to feel this way. Anyway, sorry for wittering on again - the question is - who do I tell (if anyone) to ask to come with me to see the onc. My gut instinct is my eldest sister - then I worry in case daughter feels I should have asked her.
Sorry for all this think it’s because you girls have all gone through this that you will understand my crazy muddled head is not thinking straight at the moment and I need someone just to bounce ideas off who won’t be ‘emotionally’ affected by my quandary.
Thank you all again in advance. So glad you are there and this wonderful forum
Love to all x x
HI Pinkerbell
Whoever you choose (sister or daughter) to take with you, try and write down the questions that you are going to ask and get them to write down what the onc is telling you. I always take hubby with me. It’s much better to have two pairs of ears listening to what you are being told. As you quite rightly said your head is muddled at the moment and it is possible to misunderstand some of the answers. I was dx with mets in 2006 after being “clear” for 12 years so you can imagine the state I was in when I saw the onc for the first time. It’s normal to feel as you do but there are many ladies on here who have had mets for many years and are doing very well.
good luck with your visit next week
Barbara x
Hi Ev1
Just dipped back in to let you know where i’m at. Had bone scan and then saw onc next day. They then asked if i’d go and have normal xray and come back to clinic. It appears there is ‘something’ showing on my spine and my bladder looks an odd shape. (this may be due to history of crohns and adhesions?) Anyway I ahve to have an MRI scan on 11th and see onc. on Wed 13th (it’s my birthday on the 10th and my original diagnosis was two years ago - used to enjoy my birthdays!) They have said if I get any weakness in my legs I must contact them immediately. All abit scary and worrying and as you all know it’s the not knowing that gets to you the most.
Also, I work ‘casual’ hours and therefore if I don’t work I don’t get paid - I’m worrying about money as I’m on my own - son back from uni and going back in Sept - I just wondered if anyone had first hand knowledge of the best place to go to for financial advise - MacMillans or Job Centre - I just feel so low and demotivated at present and in somewhat of a limbo state - wondering why I should try and work when maybe I can relax a bit at home with my grandchildren to cheer me up and not have to think of the ever present bills.
Keep you posted and thanks for listening - Diane X
Hi Diane
Your local Citizen’s Advice Bureau might be a good place to start, and yes MacMillan are also another good source of information for financial help and advice.
The link to MacMillan website is as follows:
macmillan.org.uk/Documents/Support_Material/About_us/Factsheets/Financial%20help.pdf
Kind regards,
Jo, Facilitator
Pinkerbell
I wonder if you need to extend your support network by getting yourself a friendly macmillan nurse (try your local hospice - you are terminal and so you qualify as you don’t have to be at death’s door to get their help). My macmillan nurse filled all the forms for me to get Disability Living Allowance - are you getting that? the Mac nurses will help ease your money worries and are worth their weight in gold
Blondie
Thanks Jo Tess & Blondie
You have all helped me such alot.
I will get in touch with all of those folk you recommend. I also spoke to my bc nurse today and she has advised that MacMillan will probably be able to provide a one off loan too.
Will let you know how I get on but feeling little less worried than I was.
Diane x
Hi There
Well I’m checking back in to update you all. Having built myself up for the results of the MRI scan I had done on Monday morning I arrived for my 3.oopm appointment with the onc today to be told ‘sorry not got the results - the radiologist is off sick and no report has been done’ “we’ll get a ct scan done to check your bladder as that looked an odd shape on the previous Bone Scan and normal xray so if you come back in 2 weeks we’ll be able to let you know the results of both”
To put it politely I was absolutely gob smacked. I’m still feeling a bit shell shocked to be honest.
I said that wasn’t good enough that both myself and my family (who had journeyed from all over to be there for support) wanted to know much sooner than that. The outcome is that maybe I will get a call before miday on Friday if not I’m to ring my breast care nurse and see if she has any information. Also not to worry as it may be artritis. Strange as the last time she looked the xrays she had she couldn’t say other than let me know if you get sudden weakness in your legs as whatever is on your spine is close to your spinal chord!
Sorry for the rant! I’ll keep you posted.
Love to all.
Diane x
Hi Diane,
just caught up with this thread when I saw the dreaded word “Crohn’s”. I was dx at 24 yrs in 1970 with small bowel Crohn’s which over the years is now Pan Crohn’s Colitis. I was dx with idc in 2003 with spread to the lymph nodes. I was doing so well on methotrexate but had to stop it to have FEC chemo -absolute nightmare, as I couldn’t eat any solid food whatsoever and spent 4 months on hospital prescribed Fortijuice, but thankfully lived to tell the tale. Back on mtx and doing fine except for some strictures in my small intestines, due to past inflammation and adhesions,which may need resection. Waiting to see the gastro.
Can’t remember the name, but there is a rare form of rheumatoid arthritis associated with Crohn’s, which I have, along with osteo-arthritis of both hips, hands and feet. I am seeing a Professor of Endocrinology Feb 25th to sort out whether I can continue with Arimidex and possibly change from weekly Alendronic Acid to an annual IV infusion Zoledronic Acid to prevent further fractures. I had two spontaneous fractures in my feet last summer, and am at high risk because of 30+ yrs of steroids, and now Arimidex.
Have you been on prednisone for any length of time? Steroids do deplete bone density which was evidenced by a DEXA bone density scan 2 yrs before I got bc, but a recent DEXA scan ordered by my bc surgeon showed significant further bone density loss since starting Arimidex 4 yrs ago, hence the referral to an Endocrinologist, who has a specific interest in Arimidex and its’ side effects. Have you had a DEXA scan?
I had an MRI scan in Nov 2007 ordered by my gastro to look at my lower abdomen as an endoscopy showed I had one stricture in my small bowel and he talked to me about resection. I heard nothing from him until I wrote to my bc surgeon late December (who seems is the only doctor interested in my mulfti-factorial problems) and copied him. Gastro rang me early January to say that he had not had the radiolgist’s written report but had looked at the MRI on the computer and it now showed 2 strictures!! Wrote to him last week asking for an appt (should have been 3 months - last saw him Oct 2007) and still have had no reply. Going to see my GP to get some action, otherwise I will write to the Chief Executive of the hospital.My breast surgeon has been brilliant, often following up with tests ordered by my gastro, who is apparently overwhelmed by his patients. Perhaps my surgeon has a relative or friend with Crohn’s, which is such a difficult disease to manage.
Weakness in the legs…oh tell me about it. For some 7/8 yrs now I have been telling my gastros that if I bend down I cannot get up without help. They make no comment and look at me as if I am a hypochondriac, which I am not. Last time I struggled to get up on a chair to clean some floor to celing mirrored wardrobes, I fell off as my thigh muscles are non-existent.
After two feet fractures, I am concerned about falling and getting a hip fracture, so I now have a local girl come in to clean twice a month.
Do get a DEXA scan, especially if you have been on steroids for any length of time. Hope you get some good results tomorrow. So sorry that you are having to deal with Crohn’s as well as bc - I have found bc much easier to deal with than Crohn’s.
Hugs,
Liz.
Hi Ev1
Just to update you. Bit confused myself but looking on the positive side of things. Having not received my MRI nscan results yesterday, i 'phoned my bc nurse this afternoon to ask what were the chances of someone reporting the results back to me today. She had checked this morning and the radiologist had written up the report and it was now ‘on computer’. Although my onc wasn’t at the hospital today she said she would try and track gher down and see if she could relay what the report said and if she (bc nurse) could then in turn relay the onc’s interpretation on to me. So in this round about fashion I have been told that there is nothing to ‘convince’ the radiologist of any mets. The onc says that he thinks there is strong evidence that it is ‘possibly’ osteoporosis.
I want to jump up and down and all of my family has but - and I’m sure alot of you will understand my holding back from cracking open the champagne at this point.
I still have to have anoth CT scan for my bladder (booked for 20th Feb) then follow up on 26th to see the onc when ALL results and whatever treatment is suggested will be discussed.
Should I be ecstatic or do you think that emotion is premature? I know osteoporosis is not a good thing either?
Any feedback welcome and thanks to you all in advancexxx
Diane
Ive recently had CT scan which showed small cyst on liver - then had to have ultrasound. Radiologist was really good, going through the ultrasound with me. His words too were, that there was nothing to convince him of it being metastic. His report didnt reach Onc in time for my appointment either - but I could hear his words!!
I would guess at your Onc being Dr Chowdry ???
Who is your BCN? Vicky?
I think that, in your shoes, I would breathe a sigh of relief and start to relax a little but I would really like to hear it straight from the horse’s mouth as such.
Personally, it wouldnt sink in with me until I’d heard a little more if you know what I mean.
(Crikey, this must sound awful but I take a lot of convincing!!!)
Roll on 26th!!! Bottles ready to be cracked open!!!
Love Anne xx
Hi pinkerbell,
I was just wondering how things are going for you?
Angee x