As I happened to be at GP’s for an unrelated matter, I mentioned the delay to the nurse. So when the hospital told me my appointment would be another 2 weeks, i went back to the nurse to ask for her advice, as she’d said they have an obligation to see me within the 2 weeks. The upshot is that practice manager at my GP’s is speaking to the hospital, as apparently this has happened to a few other patients, so hopefully I may be seen a little sooner. Is just very frustrating when you have a date in mind and nothing happens. Hope you get yours sorted soon too Di. Marge xx
Just got home to a letter informing me that appointment is cancelled and has been put back a week - 5 weeks from seeing GP, not a happy bunny especially as being out of work is not straightforward and I had just done all the prep for someone to cover for me next week! Grrrr
I just wanted to say how much I feel for you both, with this awful waiting - it really is the pits and makes me realise how fortunate I am to live in a city with a huge teaching hospital. You’re right to keep the pressure on though, and I hope that, although the wait has seemed intolerable, your eventual results turn out to be a massive relief and you can say cheerio to this site! Wishing you all the very best, Anna x
Thanks Anna. Even if it is good news (if and when I eventually see someone!), I will still come back here from time to time to read the many inspirational posts. I’m hoping to do a big walk in June and had been wondering which charity to raise funds for - decision made, BCC is a fantastic organisation. x
Hi Marge,
Just read your posts, I am sos orry your are getting messed about, more than I am in fact (which I thought was bad enough).
I know the hospitals are busy and have lots of people to see but they must realsise how much stress the waiting puts upon us. They should therefore atleast try to get us in to been seen and diagnosed (one way or another) in a reasonable length of time. It really does make me frustrated and a little angry that people are put through this.
I hope you get another letter to say they have had a cancellation and they will see you earlier…
Thinking of you hun, I know how hard it is waiting.
Hugs Di x
Hi Ladies
Its terrible that you’ve been made to wait this long. I had a two week wait and actually went to casualty after a week as my boob had swollen up and was really painful. Those weeks were terrible. Your imagination goes through all scenarios, so I totally understand where your coming from.
I hope that when you do get seen the lumps turn out to be nothing sinister and you can get on with your lives. Do come back and let us know how things go but in the meantime my advice would be ‘avoid google!!’
Take care and best wishes
Emma x
Hi everyone i am a newbie diagnosed with IBC on March 27th amd had my scans April 10th and according to my paperwork have to wait 2 weeks for results.I have however received an appointment to see my consultant in a weeks time so hopefully the waiting will finally be over.
I understand exactly where everyone is coming from when you say that the waiting is the worst…its been doing my head in !!
Fingers crossed for you Marge 44 and Frilly xx
Jane xx
Thanks ladies. I am at stage now where it isn’t at forefront of my mind too much, but I just want to know and get on with life either way, you just feel in limbo. The 2 weeks I was off work were horrible as I thought my appointment was imminent, so I was hanging around waiting for a call or letter and dwelling on possibilities more than is a good idea.
I spoke to my GP again today and he said the referral should definitely have been within 2 weeks (not the 5 it’s now scheduled for) and gave me the name of the hospital manager, so I have sent an email complaining not so much about the delay, but about mismanagement of worried patients’ expectations. A bit of grumpy old woman style ranting always works a treat, I find 
Thoughts are with everyone who is struggling, whether at waiting or treatment stage. I guess whatever the outcome, life will never be quite the same again. I have already decided to alter my working hours as I’ve been way too stressed for last few years, so my lumpiness has at least brought one silver lining for our family. xx
Find keepimg busy best thing for me.
There are times when i feel my head is spinning with all sorts of thoughts and times when i just think oh well theres nothing i can do about it just gotta get on with treatment.Then i either switch off from it or think about chemo etc.Wednesday will soon be here and i find out everything…nervous lol
Yes, keeping busy is the key. We can’t change anything, whether we know today or in a fortnight. And if there is a problem, there’ll then be another wait to find out the extent of the damage. Life is full of surprises, both good and bad - but I firmly believe that good things always come out of difficult times. When tough times arrive, you find out who your true friends are - that can be painful, but is ultimately a really valuable experience. Best of luck for Wednesday x
Thankyou x
Am finding this site a valuable support.
The waiting game i think seems compounded by the fact you have family and friends keep asking if i have heard anything yet.
Am finding out who my friends are and i have to say i have been really touched by kind words and offers of help and support,It means a lot to me.
I saw 2 doctors over a period of 2 and a half months before doc said he could suddenly feel a lump under my armpit before referring me.
My consultant said it remans to be seen if the delay has made any difference to my treatment -so that is something else that is on my mind.
My friend/colleague who is the same age as me also has IBC and has secondarys and in bomes.
Can imagine how you are feeling having to wait and fight for everything
I think the rant was definately justified.
Do you and family and friends think you had a stressful life with your job?
My diagnoses came 6 months after losing my dad and many of my friends this is why i got it.
Take care Jane x
Hi Janey, you certainly do find out who your friends are when you have BC ! However, a lot of people I have found just don’t know what to say . Seems the word cancer makes them think the worst. The one thing I have found is everyone’s cancer is different and so is their treatment and how they move forward. Try and think positive even when you have each stage to get through. A lot of the ladies and men on this site are just doing that. Easier said than done but we live in a time when treatment is good and getting better. You have to be selfish and look after yourself.
I found telling people exhausting so get those who you want to tell those you want to know ,as it saves you the stress of it all and it can get very wearing. There are many reasons why BC starts and I know stress has been listed as one of them and I have had some extremely stressful years recently and wonder if this has triggered it. Whatever has it makes no difference but what you can do now is make sure you spoil and look after yourself. I believe the more positive you can be and you eata healthy diet and take some exercise it helps. I was not really doing any of these but certainly am now!!
Once you know what you are dealing with you will feel more in control. Stop worrying about others just look after yourself and take care. Katy.
I think stress could well be a factor for some of us Janey, the average age of my grandparents was 97 and there is no history of cancer in our family. Very sorry to hear about you losing your Dad. I do try to look after myself reasonably well, but we have such busy lives and my job is both stressful and a lot of hours. We’ve just had 18 months of my OH not knowing if he would still have a job, kids have been doing GCSEs which was seemed relentless, OH then had major surgery in the autumn etc - just normal things that are part of people’s everyday lives, but i think I have probably been at least subconsciously stressed for a good few years. So I’m looking upon this experience as a wake up call whether it’s BC or not - time to be more thankful for what I have and to learn to say no to some of the rubbish I don’t need in my life! Take care x
Hi, I found a lump on Saturday morning but spent most of the time trying to convince myself that it wasnt and that I was pressing too hard, but nevertheless I booked an appointment at the Doctors today, he said that he could feel a hardening and although he was positive and told me not to worry and that he was sure it wasnt anything he still referred me…I really thought he was going to say it was nothing and for me to stop pressing too hard…I went into a complete panic!
I am so glad I have found this forum tonight, I too have been “googling” its really NOT the best thing to do
So, 37 rollercoaster days after finding the dreaded lumps, I have seen a consultant (4 hour process). Had exam, mammogram and ultrasound, which identified 4 benign cysts (showed as black holes on ultrasound), 2 slightly joined together, pretty much as I had identifed. Product of a likely surge of hormones as I speed towards the menopause - woo hoo
It hasn’t been especially fun, but it has been a worthwhile experience. I’ve had excellent support from the handful of people that I chose to tell (didn’t want to worry many, least of all my parents or kids), and have also had a timely reminder of what’s precious.
I wish everyone who is in any way touched by this hideous disease the very best of luck and courage with treatment. Thank you all for your honesty and warmth - there are some inspirational stories on here. Just knowing that others are going through the same thing makes an immeasurable difference at times like this, when it would otherwise have been so easy to feel alone. xx
Wonderful news Marge. A day for celebration I think.
Such good news Marge. Onwards and upwards xx
Thank you ladies. I will keep checking in here to see how you are all doing. Have a feeling this won’t be the end of the worries and I will certainly be a whole lot more vigilant with my checking (i.e. paranoid!). I feel guilty posting good news on here when many are not so fortunate, but thought it might be encouraging to see a good outcome for those who are worrying in the waiting room. My thoughts are with everyone whose life has been touched by cancer of any kind. xx
Hi Marge,
So pleased you got good news today, and so pleased that you came back on to post it.
I have my appointment on Monday and like you said thought was dealing really well with and trying to be level headed until my friend came round and pointed out all the random things I had been doing, kettle in the fridge, cheese in the microwave…guess my heads not where it should be.
Please take care and I hope you dont become too paranoid! (take it from someone who is it’s not a good place to be…one thing I have learned from all the guys on here so far is keep away from google!)
Take Care
HKBaby
Best of luck HKBaby - I think you will feel better just for getting the whole thing underway. It’s a bit surreal, but better to have definite answers. As you say google can be terrifying, though I think that without this website I would have driven myself mad. Hope to be reading your good news next week xx