Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Hey. Sorry I've been mia but you know what life is like. I've started my radiation, today is 5/15 and I'm so grateful to the hospital charity who have 4 cars that do runs to Addenbrooks every weekday for those of us who are having radiation. I am exhausted and wouldn't be able to drive everyday.

I've got a port and it's a lot less hassle for me as I'm over weight so my veins hide. Also as I'm quite young I was advised to get a port as they didn't want to ruin my veins for life. It's just a sharp pin prick and a small amount of pressure when they put the Huber needle in and I don't have to worry about bending my arm and kinking the line or catching the cannula when moving around.

I really have got to get my act together and start shifting some of this weight but I've decided not to do anything until I've finished the radiation as I'm too tired to attend sw or go swimming.

Much love to all.

Hi everyone, I had a colonoscopy and subsequent CT scan for a gastro problem. CT scan showed massive cyst on ovary. Had gynae appt this morning and she did not like the look (or feel of it) one bit and is concerned it is malignant. She has referred me for emergency ultrasound - DH is away at the minute. Am trying to be all philosophical but I have been poorly for well over a year My friend is coming round after work with emergency wine but I'm stuck here on me todd and feeling frightened.

Sorry you find yourself here doom - the waiting is always the worst bit.

Our lovely TQ is the in house expert on ovarian cancer and she has her own (very useful and informative) threads about how she was diagnosed.

Other than that we can just hold your hand and keep you busy while you wait!

Thank you Dulcedelecherocks am currently keeping self occupied by scrubbing bathroom tiles with a toothbrush - they are quite shocking. Haven't told DH as don't want to worry him yet. He's going to return to a sparkling palace and a recycling box brimming with wine bottles.

Hello Dame (I'm not going to call you Doom!)
TQ here.
Sorry you to see you here - the waiting and uncertainty is definitely the worst part. Once there is a plan of action in place everything seems much more manageable. Happy to answer any questions you may have. My cancer crept up on me without me noticing. When is your ultrasound?

Flippy OMG that is awful. You don't need the stress of a formal complaint on top of everything else but he can't be allowed to get away with it.

Hi TQ lovely to meet you. I am just waiting, the gynae said a few days. I have had symptoms for well over a year - all put down to bowels. I have lost a lot of weight and am now under 9 stone where 10 is good for my frame. I know I'll be in a better frame of mind once DH is back.
Am a teacher and today is the first day of our holidays so I have time to dwell hence the tile scrubbing and wine. I kept saying to the gynae it will be fine ( am armchair expert natch) and she was shaking her head saying that she does not like the look of it. I might have done a Mariah Carey style lip wobble a bit.
Am going to read your threads and do a cutlery drawer make over - I need to go and get more wine and possibly some posh cheese. Thanks again - it's really helped.

I have a port and it's been great. It was inserted using sedation (very sleepy rather than out cold) and it's been no trouble. It's so easy to access, they use it for bloods as well as treatment.

Flippy that is diabolical. He should surely be struck off for that! Did he really expect it would never be found?!

Meer I haven't had the port but I'd definitely get one if I had the chance as it saves them trying to get a cannula in and taking 5/6 attempts each time like they did with me

Snow losing your hair is tough but once I'd shaved mine off I felt so much better and more in control, I didn't even bother with wigs and just wore beanie hats when it was cold.

Flippy that's shocking! I can't believe they lied and said they'd taken it out. I'm glad you have the letter stating the he said he'd taken it out, hopefully your complaint will go through quickly as he can't deny that he said it when you have it in black and white

Waves to Pandora 👋 I don't blame you for waiting to lose weight. Radiotherapy really does make you tired

Welcome Dame but sorry you need to be here. The waiting part is honestly the worst part of all of this but we're all happy to hold your hand while you wait for answers. I don't have any advice on ovarian issues but TQ is brilliant and will advise you as much as she can

I love a bit of Black Bomber and Roquefort. Also partial to cashews... Accompanied by copious amounts of red wine, though sadly I seem to have lost my taste for it

My other threads are here and the latest one here

My symptoms were not like yours at all though. No pain, no weight loss, no bowel issues. I hope the medics are wrong.

Hi Dame. Welcome but sorry that you're here. I hope your friend and the emergency wine helps and you find out what's going on soon.

Pan, I struggled through rads too, much more than I did with chemo, it was exhausting. Rest up.

@TQ, that's it exactly - he can't be allowed to get away with it. As well as working in the NHS he holds two private healthcare positions. A quick google threw up a negligence case where he was supervising in theatre - patient lost litres of blood and almost died. I knew he'd screwed up in not diagnosing me properly etc, but complaints are supposed to be brought within 12 months and at that point I definitely didn't have the energy. I've just found out about the IUCD though and I was not best pleased! @Knicker, I don't know what he thought - maybe that I'd have a hysterectomy and it wouldn't matter? Although it would have been found in the pathology lab. @Purple, I hope it goes through quickly too, it's frightening to think that he's still seeing other women.

I'm p'd off because my GP said I'll need to have surgery to have it removed - admittedly only a small day surgery, but I could do without it. I'll mention it to my onc when I next see him - can't imagine he'll be best pleased either, as it means I've had a progesterone releasing device for over 2 years since I was advised to have it removed because of progesterone + BC.

Just when I thought things were going to be quite dull for a while!!

Have you tried Idiazabal TQ? a friend gave me a whole cheese she had received from a Spanish student. Two days and the entire thing was gone.
Am only a couple of pages in but you are an amazing lady and just reading what I have so far is really helpful. Thank you so much. I hope you are well.
All cheese recs gratefully received.

Pandora I didn’t do much whilst I was having radiation. I think it’s enough just to get yourself there and get home. There was quite a lot of waiting where I went and that can be tiring in itself xx

Sorry you find yourself here Dame but hope gynae is wrong.

I didn’t have a port or picc line (had 7 rounds of chemo every 3 weeks all via cannula). Do your veins eventually “recover”does anyone know? I wasn’t told about any long term risks to veins from the chemo. At least don’t think I was

I thought you were recommending a new chemo drug dame!

I'll look out for that...

I have a hickman line and it's an absolute god send. No needles, no struggling to find veins etc. I had a picc line before the Hickman line, but chemo has made my veins shrink, hence the Hickman. I'd recommend it to anyone.

Flippy I can't believe what you've been through with that doctor! Surely the last thing you need to deal with. His behaviour is shocking and he shouldn't be treating patients! You must be so angry.

Dame Sorry you're here, waiting is definitely the worst. I hope your obgyn is wrong too!

Damn I'm struggling to follow this thread. Chemo brain!

Quick question: Chemo or chemo induced early menopause is giving me awful hot flushes. Do you think I can ask for anything to help with them (make them stop!), or will they want to wait until chemo is finished? I'm on so much medication, I imagine they won't want to add anything else to the mix.

The hot flushes are the WORST, aren't they? I end up having to change my pyjamas in the middle of the night.

I've been told that there's a new medication which was designed to help bladder problems but actually helps with the flushes, but I don't know the name of it, I'm afraid. I'm definitely going to ask next time I see my doctor.

Aha! Found it by googling. Oxybutynin.

Thanks bitoffun I'll mention that the next time I see my doctor!
And yeah they are the worst. I don't know how I'll cope in summer!

Tahiti I've been 'enjoying ' the delights of hot flushes too... Noodles has highly recommended acupuncture to help. Have you a cancer centre near you? They should offer free sessions xx

Meercat hope you got on ok at your pre chemo chat yesterday? I found mine terrifying had to go for a couple of wines to de stress!

My mum is having a port on 10th of may as they are struggling to get veins now

KnickerBocker The pre chemo chat was OK. Total information overload though. They were lovely but I did feel that they were going through the information more so they could tick off that I had been "informed" than for my benefit. Having said that I also have lots of written information that has been helpful.

Having said that, when I expressed some concerns about the port and the procedure to put it in place they were very supportive. They showed me what a port looks like and explained exactly how it will be fitted, that it will be very sore for a couple of days but that it will heal and will be better and have less risks for me overall.

I seemed to spend all day at the hospital yesterday as I also had my echocardiogram. I have a heart murmur so I knew they would take a bit longer over assessing the results because of that but luckily my last echo was at the same hospital and only 18 months ago so they could check that there had been no change and they are happy for me to go ahead with Herceptin.

This morning I saw the wig lady. She was so lovely and very helpful and reassuring. She has taken measurements taken notes of the colours and styles we have agreed and says if it becomes clear that I will need the wig I can just ring and she will have a selection of suitable wigs ready for me within 48 hours.

I have also ordered a front opening shirt to wear for the chemo. Yellow gingham. The brightest I could find!! Now I feel that I have done all that I can do to prepare for this so I just have to wait and see how my body reacts and how I cope with it.

So grateful for the support here. It really does help to talk with people who are dealing with the same issues.

Hello everyone, introducing myself as a new joiner with breast cancer and very glad to have found you on here.

I was diagnosed about two weeks ago with a 40mm lump plus one lymph node affected, it’s aggressive and so the first port of call is chemo. I’m negative for estrogen and progesterone responsiveness but waiting for HER2 result which seems to be taking an age (although it is all relative as I am hugely lucky to have medical cover through work and have been whisked through the process so far).

Meercat I’m finding your posts useful as it sounds as if we are at similar stages and I’m having the pre-chemo chat this week, although I won’t have surgery for a while. I too am most dreading the hair loss and have been offered the port which I’m minded to go for.

We have been away on holiday abroad this week which initially felt like a good idea to go ahead with, in order to have some relaxing family time before it all starts, but in truth it’s been a bloody long week and I’ve been counting the days to get home. It’s not helped that the weather has been a bit shit, where we are is like the seaside town they forgot to close down, the food’s low quality and we have run out of any day trips. We are laughing rather than crying at least and there is always wine .

I don’t think I have reconciled that I am about to start having this heavy duty treatment that is going to change how I look and feel so much. I have told lots of people this news and they are hugely kind and offering all sorts of help and support, but I feel detached from what’s about to happen and like I am not admitting it to myself yet. Only cried a couple of times so far, which feels like very little for this grade of life event.

I hope you won’t mind me asking questions and whingeing on here as it goes along. Reading what you’re all going through is helpful, heartening, saddening, scary and everything else.

Brassica I am sorry that you are going through this too. I know exactly what you mean about feeling detached. If I had been asked before this happened to me how I would react I would have guessed that I would have been a weepy mess. (I am about most things!) In fact it has almost felt as if it is happening to someone else and not even someone I know very well.

I am finding that waiting for treatment to start is hard to cope with. Hopefully once it gets going we will be more able to cope with it all.

I too thought Ideozabal was a new type of chemo and not a cheese

MrsT my veins are starting to get better as I can see them again on my arms and I think my last chemo was around January time although I guess it depends on which chemo you have

If anyone has any suggestions about hot flushes I'm all ears, weirdly it only seems to cause my head to sweat. It never happened before my hair started growing back

Meer you'll be absolutely fine once you get started, I think the fear of the unknown is the worst part and remember they have to tell you about every side effect just incase you do get any but it's extremely unlikely you'll get all of them.
Have you got a chemo bag ready? A book (or kindle if you have one) snacks, phone charger, knitting or any craft stuff you like to do to pass the time and plenty of drinks as it helps flush the toxins out quicker the nurses told me

Welcome Brassica lots of ladies on here with breast cancer who can answer any questions you have. Feel free to whinge as much as you need too, we've all been where you are at one point and we understand how tough the in between bit is before starting treatment