Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

Oh zorgo I so feel for you. It's strange isn't it that savoury foods are ok for you whereas sweet was all I could tolerate. I couldn't eat bread either, nor toast which I love and which any sensible person would say is bland and suitable food. I couldn't tolerate it. I remember taking a bite and having to spit it out....tasted and felt disgusting. Spicy food was absolutely out for me as well as it burned a lot. Basically just find what you can manage and eat that until its over. Not long now although I'm.sure it feel a like an age
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meercat not really. I think I'll have a better idea at my next scan. Will have been on heart meds 6 weeks by then

Hi all, I'm jumping on board after a 10 year absence, think I was holstenlips back then!! Anyway, aaaargghh, I have the fear, big time, pain in back pelvis hip waking me at night, loosing a bit of weight, just waiting on tests

@pnutter Poor you, waiting for results is the worst! Do you know when you can expect to hear?

Hi Piggles, I've had a pelvic ultrasound, nothing was flagged up to me anyway, I called nurse specialist yday as pain is mostly back, hip she is going to get back to me after talking to consultant. It is the first time I've felt terrified, I have 2 kids on my own. I'm not scared for me, but for them. This could all be something entirely else of course, like old age, I'm 48 BTW, or arthritis??

Hellos and love to everyone x

I had a productive meeting with surgeon yesterday. After he has performed the lumpectomy, he's going to give me a 'therapeutic reduction mammoplasty' which is basically a boob reduction and boob lift. Unfortunately he won't do both boobs at the same time because I need RT in-between. So will have wonky boobs for three months.

The irony is I have wanted a boob reduction and lift for years! And now I'm getting one for free, from a really top surgeon. You couldn't make it up. So I'm hopefully going from a 34G to a 34D. I'm really trying hard to see it as a silver lining.

I've also already lost 6lbs as I have cut out all sugar and any junk and drinking green tea by the gallon [sick]

Just praying hard that the sentinel node biopsy is as clear as it looks on the ultrasound, and that they get clear margins.

Have been doing a lot of research and reading and can highly recommend reading "Oestrogen Matters" by Prof Avrum Bluming and "The History and Mystery of Breast Cancer" by Prof Michael Baum. They're both top surgical oncologists, specialising in breast cancer. Really fascinating and eye opening and debunks so many myths and misconceptions. An awful lot of what we think we know, we don't!

for everyone going through this shit x

pnutter it could well be a menopause symtom. One of my first meno symptoms was very painful ankles and hips on waking, I used to limp until lunch time. I thought I was getting arthritis at only 43! Started HRT and the pains disappeared, apparently aching joints are classic signs of lowering estrogen.

@pnutter I’m sorry you find yourself on the thread again. Everything crossed for you that it’s nothing. But hopefully all tests are speedy and you get some answers soon.

@peaceanddove that’s a good silver lining and a positive way to look at things. My silver lining was going to be weight loss.. I’ve gained

@Zorgothslugofdoom that sounds absolutely horrid I’m sorry you have to put up with that on top of everything else. I have come slightly addicted to potato waffles have only eaten them once before in my life maybe you could give them a whirl?

Just had bloods done and waiting to see dr. Only took two attempts at bloods this time.
I’ve well and truely got the fear with blood tests now as soon as the first one didn’t work I burst into tears . My bruises are slowly fading from the bloods a week and a bit a go I had in A&E. Stupid dr said he wanted to avoid picc line (spelling?) if he could. Should have stood my ground.

Thanks everyone and sorry that you are all here too 💐 for info my original cancer was vulval. As I said I've had pelvic /back pain for a long time and it is now worse in the back hip at night it wakes me up. I am in bed as I feel particularly rough today but I think that's a cold or flu on top. If the pain is horrendous tonight I may just go to gp or a+e tomorrow.

Hi all, I posted here last week for the first time, after finding out I am pregnant one week after having 2 moles removed for biopsy. 2 weeks tomorrow since I had the op. I did try to get a call back from one of the consultants to get some sort of reassurance but never got a call. Then this evening, I was at home with a friend cooking dinner, at 7.30 I received a text from the hospital offering a face to face appointment, for 1st April. No explanation what its for. All I remember is the doc before the surgery saying, and if it's melanoma we get you back in here to talk about the next steps. I rang the hospital straight away, answer phone message to say the reception is closed for the day. So now i'm sitting here thinking the worst. Would they really make me wait 7 weeks to tell me i've got melanoma? (Or 9 weeks from the op) if I have then i'll need more tests, another 2 weeks if i'm lucky, then another 6 i'm guessing for a diagnosis. If the pregnancy is healthy i'll be about 20 weeks by then. This is all too much.

So my plan, ring the hospital first thing in the morning and demand to know what the appointment is about, what the results are, and if it's not good then I can't wait that long for more tests. I am pregnant. Having a cancer diagnosis would change everything. I also have my first midwife appt at the GP tomorrow afternoon, I am just so worried and anxious, I feel like a nervous wreck. I have a history of anxiety, I don't handle this level of stress very well.

My friend was here when I got the text so I ended up telling her everything and she was very supportive, but she's gone now, partner is working so i'm on my own. I am just writing this as a distraction to try and not lose my sh*t. Sorry for the long worrisome post. Xx

Hi Qwerty, so sorry you have been left worrying, it happens a lot in my experience 😢 I think talk to your midwife tomorrow, if you get on with her, she will hopefully support you, plus maybe she can pull a few strings that's just a possible, I don't know. But talking about your feelings until you get your results definitely, sending you a hug

Hi Qwerty I’m so sorry you’re going through this. Your plan sounds like a good one, but if you don’t get the answers you need then maybe think about calling Macmillan or one of the melanoma charities to talk it through.

I had stage 2c melanoma last year. I had a lot of scans but it hadn’t spread so surgery to remove the melanoma was (hopefully!) enough. Your pregnancy (congratulations, btw xx) may impact on the scans you can have, so it Is worth flagging with your team sooner rather than later.

In the meantime, please vent on here as much as you need to xx

@QwertyGurty, how worrying! I genuinely don't think they'd leave it that long if it were bad news: in my experience things start to move at breakneck speed. You definitely need to speak to them though- it's not right to leave you in a state of anxiety.

@Zorgothslugofdoom I really feel for you, having hardly been able to eat since this this disgusting infection took root in my lower jaw. Russian Fudge yoghurt from the Co-op should be sponsoring all my posts!

This week the dental surgeons took a sample of my jawbone, which was exactly as traumatic as it sounds! Along with FOUR TEETH . The others are probably too loose to survive a future cull too, so dentures beckon, I reckon.

The good news though is that the biopsy of the nodes in my neck was completely clear of cancer cells, and once they get the results from my teeth and jaw, it's entirely possible that the CT of my head and neck was simply misinterpreted.

What IS known though, is that I have a nasty infection, so AT LAST I have been given appropriate anti-biotics, yay! I can't drink a drop of alcohol for two weeks, which is a slight bummer, given I've got delightfully boozy friends visiting tomorrow evening, but I'll manage. I'm still losing weight (hurrah!), and I expect that I'll be feeling positively Paltrowesque after a fortnight on the wagon .

Love and luck to everyone here for next week .

Thanks BitOfFun, pnutter and toofaroutallmylife, for your responses, it really means a lot. And thanks for sharing your experiences, if this has taught me anything it's that we are not alone! When I have some answers I will keep you posted. Well wishes to you all. Xx

@QwertyGurty I really hope you get some answers quickly and it's not bad news. 1 April does seem like a long way away if it's something they're worried about but the waiting and not knowing is absolutely awful. Congratulations on the pregnancy and I'm so sorry it's turned out to be such a worrying time.

Just caught up with everything here - I haven't been online much for the last couple of weeks. After my treatment today I'll be half way through radiotherapy, it is going sooooo slowly! The travel up to chelsea every day is hard, although I've found the easiest way to do it is drive the whole way, there's a carpark near south kensington tube which is £££ and tiny so not always easy to park but it's easier than parking further away and getting the train and tube. It's about a five hour round trip if the traffic is ok. I'm beginning to feel really knackered and I'm getting the dreaded dire rear (pelvic radiotherapy). I've lost about five kilos since diagnosis which isn't that much, but I'm looking a bit gaunt and skeletal (as my mother so kindly told me) and my skin is hanging off me attractively - four pregnancies has left me with a bit spare anyway - and I'm feeling a bit down. No reason for the weight loss other than stress I think. I have another radiology appt after my treatment today, I'm getting pain in my sacrum where they're focusing the radiation which is making it very uncomfortable when I try to slouch on the sofa, but I don't think there's anything to be done about that.

Healing thoughts to everyone

@QwertyGurty I don’t think I replied to your original post? I find it so hard to keep everyone inline on this thread but I don’t attempt it. Like others above I think 7 weeks is way to long a wait for bad news! I would have thought they would want to get treatment started straight away if it was something. You have a good plan though about calling up and finding out what the hell is going on.

I am supposed to be having my last (before scam) round of chemo start tomorrow. I spent Tuesday night in the Marsden getting bloods done has I had a temp everything came back with no infection but they have given me antibiotics just in case. Still had temp last night none so far today but I still feel like absolute death and not sure how i will manage chemo on top. They mentioned about pushing it back a few days, will have to ring up this afternoon to discuss.

@BitOfFun glad you are finally on some decent antibiotics! Jaw biopsy sounds horrendous! Fingers crossed the CT scan was misread!

Yay for half way through treatment @DaisyBD! I’m not surprised you are feeling completely knackered with that journey. Hope they can do something about they pain you are getting.

Well, it looks like I’m going to be spending more time on this section of MN than I had hoped, or expected. Recalled after first mammogram. High likelihood of breast cancer in right breast. Can’t feel any lumps or anything. I’m very shocked.

@daisypond so sorry you have to stick around. I might be wrong as I have no experience with breast cancer but does that mean they have got it quite early if there are no lumps?

Hi @daisypond sorry to hear your bad news. Have you had biopsies done or been to a breast clinic yet. It does seem that often a cancer is recognisable to a radiologist from just a mammogram. So many do seem to be picked up on screening. The initial waiting and worrying is the worst part in many ways.
If you feel up to reading all the thread there are lots of posts about the diagnostic process. Is there anything you want to ask?

I'm just coming out the other side after 8 months of appointments, surgery and chemotherapy. Last radiotherapy tomorrow. I wish I could say I felt delighted about it but I don't.

@ DaisyBD
Nice to hear from you again and well done at reaching your halfway mark with the Rads especially with your horrendous 5 hour round trip to the specialist hospital . Now that is stress you don't need while having Rads.
I too lost lots more weight towards the end of my rads and for 4 months after, but I went down to 43 kilos, now back up to 51 2 which is still too thin and weak due to muscle wastage.
I also had Pelvic area rads aimed primarily at my bladder and though not having the dire rear, I had painful nerve damage all round the genital area including the rear.
That suddenly eased off but then I hurt my back in bed and been in agony since. That bed we lie on has been called the torture rack for some of us.
Is the Sacrum the lumber region as that is what I have been suffering from and have an MRI scan next week mainly to see if it is being caused by my cancer.
I doubt that anything can be done about that either. And no pain killers work.
My lower abs are now swollen and hard but a CT showed no cancer spread there or anywhere else.
My best wishes for you.

Skap and Squiffy Yes, I have been to breast clinic and they showed the area they were concerned about after my routine first mammogram a couple of weeks ago. There is definitely something there. They did an ultrasound and then a biopsy - which took forever as I have teeny boobs and they couldn’t get the equipment in place easily. I wanted to cry. I probably did. Results next week. I feel strangely calm after being a wreck all week. Odd in the waiting room seeing all these women waiting and then leaving with smiles, and I was counting the odds. Every time someone left, I thought that makes it worse for me. Selfish, but there you go. I was there four hours. I worry about my daughters, in their late teens and early 20s.
I am in awe of so many of you on this thread.

Hi everyone,

Tomorrow I'm going bs k to the hospital for my results from last weeks surgery. I'm fed up of not being able ti scrub my whole body. My armpit stinks I changed the dressing under my arm because I had two on top of each other and it was peeling and stinking. Tomorrow they better be coming off. I'm praying I'm not going to need chemo, but I'll deal with it whatever comes my way now. I've washed my hair!! Hoping I can go back to work Monday.

I'll be giving my idiot bf an ultimatum this evening. If he lets me down tomorrow we are over fir good and no coming back from it thus time. Unfortunately I'm in love with a drug user who has gone off the rails instead of stepping up. I haven't been strong enough to bin him, but tomorrow is too important for him to let me down because he's got off on one the night before. It's gonna be a case of when I'm back to normal and strong enough he's gotta go.

Anyways that's me. Hope you're all ok and good luck to all those who need it xxx

@Nonotmenori do you have someone else to go with you tomorrow? How is your arm / shoulder movement? You really don't want to be let down on this appointment. Will be thinking of you tomorrow.

@daisypond I have tiny breasts as well but I felt a definite lump. Don't be surprised if you feel lumps in the next week or two as the biopsy can cause swelling (I was convinced my lump had doubled in size - it hadn't). My DC are in their early 20s. It's not very MNy but they do still need you when they are grown up and I understand your fears. Do your DDs know about this? Do you have someone to support you?

Just caught up with the thread.
@yoikes how did the fluorescein angiogram go yesterday? I can't imagine what it involves, doesn't sound fun.
@Nonotmenori I hope the appointment goes well tomorrow and you get the bandages off. Is someone going with you?
@digerd you have had a rotten time for ages now, haven't you? Much sympathy.
@Hippiechick162 glad you have an actual date for surgery.
@daisypond very sorry you are facing the likelihood of breast cancer. Waiting for results is very hard so I hope you have RL support and distractions.
@pnutter I really hope there's nothing awful going on for you. Has the nurse specialist got back to you yet?
@peaceanddove you can look forward to having two matching breasts eventually! You'll deserve them!
@QwertyGurty it seems to me too that they wouldn't wait till the beginning of April to tell you if it was bad news. Hope you can find out much sooner than that, anyway.
@BitOfFun that is good news about the neck nodes, and of course I very much hope the jaw issue is not cancer.
@DaisyBD it must be really wearisome having such a long journey for treatment, especially having to drive into inner London. Have you asked anyone about the weight loss? Hope Dire Rear clears up soon.
@Squiffy01 good luck for chemo tomorrow and I hope you're not feeling too poorly with the infection.
My news is that yesterday I rowed again for the first time since I don't know when - maybe last March? Just a short row, but I also coxed the boat for a much longer time, I do like coxing. It was just amazing and made me feel quite emotional - a real landmark of recovery.
Sending very good wishes to everyone here.