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.

Lovely to hear a good news klaxon iVampire! Although IBS doesn't sound like much fun I hope yours turns out to be same diagnosis Peapod

London that sounds amazing! And if the palliative care over there is good then I would definitely go. It would be lovely to spend your remaining time relaxing in the sunshine

Thanks everyone, I knew what was coming but to not have to see my oncologist again makes me feel like I'm free falling now without a safety net
I remember the time from Leslie needing her wheelchair full time to not being able to get out of her bed and thinking how fast that happened but I think once treatment stops things start speeding up. I'm getting more abdominal pain now despite them upping my fentanyl patches and my oncologist has told me the hospice is the best place to get my pain under control.
It just feels like the final step so I'm trying to hold off until next week when I see my nurse again, he came today but my mam was here and she's barely holding it together as it is

An unMNetty {{hug}} purple

I’m so sorry to read that the fentanyl isn’t doing the trick any more (I’m not allowed it, but I heard it’s usually good stuff) and I hope someone can sort out a new pain relief regime for you swiftly

@purpleunicorns so sorry to read your update. 

Onc appt on Monday was ok. Registrar was lovely and has requested mammo. My liver scores have improved ( yay).

Waves to all.

Purple it's quite understandable that you feel cast adrift now that you will no longer be seeing the oncologist. There will be those on here with far wiser words than mine, but I do remember this well when I was with each of my parents when they first got in touch with the hospice. The one thing I would say was that the hospice staff were very reassuring, whilst still being realistic and offered all sorts of things to keep their patients comfortable. I think my father in particular found it quite a relief to be in touch with them and to have the appropriate care and pain relief so readily available after soldiering on at home for some time.

In terms of your mam, it's also worth knowing that the hospice staff can be of great support not only to the patients but definitely also to relatives.

Also in terms of your DH and your son, if your hospice is similar to the one here they may also offer services to help them too

Thank you, purple. It’s helpful to know that at least one person doesn’t think I am bonkers considering a move to SA.

A few months ago I could not have imagined saying those words, or considering end of life matters. I am quite sanguine about it. For now.

purple, your openness and honesty are so grounding for me and I am sure it is for others too. You and Leslie have given us an insight that our medics shy away from. That we cannot discuss easily with our families.

I know it’s just words on a screen but I am sending all the love in the world to you right now, as you and your family get your heads around the next phase. I am so fucking sorry that you are going through this. We are with you for as long as you need us xxx

Crikey. My last post was overly maudlin. I should, in MumsNet style, have at least offered some and and a bloody

Where are my manners?!

Big love to you, purple xx

Purple, that's a lot to take in. Sending you so much love

Oh purple I don't know what to say, I can imagine you must feel like you are free falling now. I feel very insecure coming to the end of active treatment, so cannot begin to imagine how it is being at the end of all treatment other than palliative care.
Don't get into pain by holding off on the hospice for fear of upsetting anyone. They will be more glad you were pain free than uncomfortable. I think peapod has good advice there regarding the hospice. I haven't personally had/got any experience of them.
I'm sorry those patches are not hitting the spot as well as they did. Lots of love to you and your family x

Good to hear from Amber so many years on from diagnosis/treatment too. Thanks for the update. I am feeling quite gloomy when I stop and think about things, so that helped alot.

London I don't think you are mad for a potential move to S.A. for the sunshine when you feel it is right. It sounds like your partner would also have support on hand there too, which will also be beneficial.

knicker well done on the last chemo. Are you nearly done with the side effects now? I hope so. Also keepcalm well done for the last radio. I hope you are not too shattered...

Good news weebarra .... My daughter's are 5 & 8 and have had mentor support at school. They have both handled it well so far, but the eldest (who is quite sensitive anyway) has spoken to the mentor recently about her fear of it returning, so I hope she isn't overly worrying. She hasn't said anything to me. I hope your son relaxes more now this is not anything sinister (as someone said, it is amazing what quantifies as good news now!)

Welcome to snow too, sorry you find yourself here, but it is a great place for support and questions etc.

Well done on taking one for the team there TQ!! I haven't watched the stand up to cancer bake off. Mainly as after getting sleepy so early I have kind of missed early evening tv shows. I must catch up on it.

I am organising to do an organised 10 mile walk with my friend as a fitness goal to raise money for a couple of local centres near to me, so am walking my dog doubly far in prep! They have been there if needed & offer advice/counselling/massage, acupuncture etc. I am making use of a few of their services now, so thought I would try to fundraise for them as well.
Looking forward to trying their pink ribbon pilates course too, so I can be guided with what I do going forwards in a regular pilates. After my op (lumpectomy & node clearance) it will be good to do there 1st where there is understanding of movement/scar tissue after an op. Has anyone else tried anything similar?
I had acupuncture on Monday too which is supposed to help with the hot flushes.

Apologies to anyone I have missed, hello & waves to all

Thinking of you purple - I haven't anything helpful to say but you know we are here for ranting at and any support we can offer, just as you support us. Sending you hugs and

Thinking of you Purple and so sorry you are facing this.

purple I'm thinking of you, and after all the support you've given everyone on this thread it's time for us to support you . If there's anything you need just say.

I'm doing ok, 2 weeks post radiotherapy and the area where I had the boost is a bit of a red, pealing, swollen mess but it's getting better gradually. I'm having to drag myself out of bed in the morning, but I don't know if that's the after effects of the radio, the tamoxifen or the mirtazapine! I still haven't had any hot flushes, which I'm sort of pleased about but also worried tamoxifen is not very effective for me. But I'll ask about that at my next check up.

Hi lovely lacies....

I used to be on the boards a couple of years,ago when I was diagnosed with breast cancer (er/pr+ her2-).. I had lumpectomy and radiotherapy but no chemo.. and am.now on tamoxifen.
I'm delurking to say to caz that I've had v few side effects from tamoxifen and was assured that didn't mean it wasn't working!
Also purple I'm so sorry to hear your news... must be terribly hard and I know that you're incredibly selfless and worried about everyone else. Lots of love and hugs to you.
tq your stand up to cancer taking one for the team made me chuckle.. hope all is well with you
Waving to everyone. And if anyone ever wants to hear from someone two years the other side then feel free to ask me anything. Happily I've just had my two year mammogram etc and so far so good!!

Hi all, just to introduce myself. Recently diagnosed with breast cancer. Had surgery last month. Was told that I would need radiotherapy and probably tablet treatment. I am glad to find this thread although to be honest it is one I would have preferred not to be eligible for.

Yesterday they told me that the tests on the tumour show that I need Paclitaxel weekly for 12 weeks, Herceptin every three weeks and Zoneclodic Acid every six months for 2-3 years.

I have been emotionally quite numb about the whole thing so far but hearing about the chemo for the first time yesterday has hit hard. Today I feel quite weak and shaky.

I know it is ridiculously shallow of me but the bit that has hit hardest is the hair loss. Everything else I can cope with in my own way only telling those I want to tell. Hair loss will be obvious to all and sort of takes away my choice about who to tell.

I am planning on opting for the ice cap even though it doesn't sound particularly pleasant. Any advice from others that have used it would be welcome. How did it work for you. Was it worth the discomfort?

Glad you made the leap over meercat. No-one wants to be here really but you'll find a lot of support and answers to questions.

At the top of the thread you'll find introductions from everyone on what kind of cancers we have. I had taxol but not for BC. I didn't cold cap

It's not shallow to be concerned about your hair btw. Some people do find it very distressing .

Thank you for the link TwitterQueen

Hi meercat I felt exactly the same about chemo - that losing my hair was akin to waving a placard at the world announcing I have cancer! I kept it within very small circles for the first 8 months. Having said that, I chose not to cold cap as I didn't want to be in for treatment a minute longer than necessary, however the lady opposite me did - and although she suffered a little thinning, still had a full head of hair at session 4.
I had ECx3 then Docetaxal x3 and Herceptin 3 weekly. I go back on the tamoxifen in a couple of weeks. Feel free to wail/gnash teeth/ ask any questions here. Some of the side effects can be a little unexpected

Purple - thinking of you and hope your pain can be brought under control.

London. If you feel like a move to SA will be better for you then just do it! I think living in sunshine is so much better for us.

Meercat. Welcome although sorry you have to be here. I found losing my hair upsetting from the point of view that any internal vestiges of denial about having cancer could not be maintained. However, once it was gone I adjusted suprisingly quickly. I found some nice headscarves and didn’t end up wearing the wig I had bought. I didn’t cold cap mainly because I just wanted to be in and out of hospital as soon as possible on chemo days xx

Hi Meercat
I pop in from time to time and have found this thread so supportive , I had BC treatment in 2017 and used the cold cap it did not work for me and still I lost most of my hair and ended up wearing a wig but I did keep going with it as nurses said my hair would come back quicker which it did and I was never completely bald about 90 percent though, It is uncomfortable and adds extra time before and after treatment, around me it worked for plenty of others so you can always give it a try, good luck my advice would be take a painkiller as they turn it on or beforehand

Thank you for the welcome and for the advice. It is all a bit strange and daunting at the moment. I am really grateful to have somewhere safe to come and talk

Thanks again you lovely lot, you've all gotten me through the last 18 month so I'm sure you can put up with me for a couple more I'm definitely feeling the love and will take all the and on offer.

I've had my Mam round today and we've talked and cried and both feel better for it I think, she's joined a Macmillan forum to talk to others in her situation so I think that's helping her too. I'm going to ask my nurse if he knows of anything else online she can access as I don't think she wants to talk face to face with people just yet.

Noodles let me know if you have an online donation page and I'll sponsor you

Brilliant news about your mammogram Freddie! What a relief

Welcome Meercat. It's not shallow at all worrying about hair loss. I never tried the cold cap but going bald was nowhere near as bad as I was expecting it to be, some of the wigs are so realistic now you can't even tell. Do you have much support in real life?

Delurking to send love to purple. IME as a family member of a cancer patient, hospices are fantastic places. They provide support to the patient and their families, and seem to be top notch at pain control. It’s a hard step to take emotionally and mentally though, but may help stop that free falling sensation. They did for us.

Sending love to purple and her mum 💕

Do you mind if I ask you all a bit of a silly question?


I was diagnosed with ER+ Inflammatory Breast Cancer (Stage 4) in September, and put into chemical menopause. The hardness and firmness of the affected breast doesn't seem to have lessened at all though.


Should I expect the primary tumour to be reducing at all on hormone therapy? Or is it usual for it to stay the same?

Sorry to hear your update purple

I have serious Chemo brain at the moment so I apologise in advance for not being able to follow things very well. I got totally confused at a shopping centre I often go to yesterday and ended up in tears as I couldn't workout where I had parked. A very lovely lady took pity on me and helped, she was so lovely it really made my day.

Meerkat I am doing the cold cap, had my first chemo session on the 26th March. It does mean you are there for longer, I think if I didn't do it I would be in and out in a couple of hours and it is four hours if you do the cap. It wasn't as horrible as I thought tbh although I did what the nurse had told me to and took paracetamol an hour before my appointment which apparently really helps. It only started getting really uncomfortable twenty minutes before the end (when I guess the paracetamol would be wearing off). Like others I am keen to avoid the visible label that is hair loss. Twelve days later my scalp still feels a bit tingly. My next session is on Tuesday so I can let you know how I go if you like.