Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Sorry I forgot to mention I’ve changed my username from moorfool to grateful3

I'm due to have a PET scan next week, then outcome of that is 'possible radiotherapy'. I have a large tennis ball lump in my groin so god knows how that will work, but it's in all my lymphnodes as I have Folliclular Lymphoma.
Will I be hospitalised for the day? Or am I looking at weeks?
I hate the uncertainty of it all. 😔

@PaddingtonStareBare do you mean hospitalised for the day for radio or the scan? They do the scan in 1 day and I would imagine if you need radiotherapy it'll be one session of about an hour each day for a number of weeks for the correct dosing. You don't usually stay in hospital for radiotherapy.

Sorry you're having such a shitty time of it. I'm still waiting. Which is horrendous because I work in paediatric oncology now and previously I worked in oncology theatres so I know what it's fairly likely to be, I know they're ruling out stuff but I hate not being in control

I have just read that NICE are seeking to remove their approval Niraparib for the maintenance treatment of all women with ovarian cancer regardless of BRCA status. This is obviously a lifeline for many and a source of hope.
Target Ovarian cancer are collecting casestudies from women who have been treated with Niraparib they need these stories to present to NICE, they meet on the 9.9.21.
The withdrawal of approval won't affect you if you 've already started Niraparib.
I hope nobody minds me posting here but it is close to my heart and a comfort to know that it's a option for me if/ when I need it.
Bloody cancer just when you start to lift your head up again something else comes along

@Runningwithoutstopping I read this on Saturday and my heart sank. I hope to go onto Niraparib in the next few weeks as a first line maintenance treatment. The article I read stated that NICE were proposing withdrawing it for second line treatment for ladies who are BRCA negative, is this what you've read today? You're so right, just when you pick up, something else comes along to slap you down.

Your right it is 2nd line treatment.I guess I'm getting ahead of myself no one has ever said that I will need Niraparib but it was nice to know that it might be a option if/when I need it.
If it's removed from the NHS it feels like another avenue shut down.
Hopefully you will be able to start your treatment. X

Anyone on Niraparib ? I have started 2 weeks ago and my blood pressure has gone up despite me being on BP medication which has been increased ! Wonder how high it has to be before its a concern and I would be taken off it. Cant seem to contact any of the CNS for info.

It's a very bitter sweet thing to keep having tests and scans. OTOH you need to know and OTOH you don't want to know and the waiting around is endless. Just waiting for a date for a CT brain scan. I was expecting 'oh don't be paranoid Acinonyx, just take some pain killers and see how it goes.' This is going to be a Zen challenge

The waiting and not knowing is the hardest thing. I find it almost impossible not to catastrophise.

I had my pre-chemo assessment yesterday and felt so much better after talking to the nurse. All the oncology nursing staff at my local hospital seem wonderful - very friendly and knowledgeable and supportive and kind. I'm much more calm today than I was this time yesterday. First chemo is this afternoon.

@Acinonyx2 sorry to hear that, will be keeping everything crossed for you. I've been having some paranoia about brain mets over the last week. I'm putting it down to the massive amount of drugs I've had for now. Sending Zen vibes your way.

@SewingBees I was a complete mess at diagnosis. It's really hard not to think the worse. I found the constant mental challenge by far the most difficult part of all this. Meditation has been my friend throughout. It is the only time I forget I have cancer.

@TopOfTheCliff hope you are managing to swerve Covid. I was shocked at the rates your way. I cancelled my trip to Devon after your post.

@HauntedDishcloth thanks for the Manuka honey rec. I'm doing the vegan thing at the mo but have got some for the DC's. Im slightly obsessed with their health these days.

@Bakewellisntjustacake sending a big hand hold while you wait.

My feet seem to be holding out, no skin peeling thankfully. I've manage to put 3 of the 4 kgs I lost and did a proper work out yesterday 💪. My digestive system is still not happy though and I'm bordering on some pancreatic issues again I think. My next chemo has been delayed a week and I'm definitely asking for a dose reduction. A suitable dose for my weight would be a start.

@peridito - can I ask if you are able to lie flat? My body longs to lie down. I did try in the bath the other day as I miss the feeling of having my head under water but it was unpleasant.

@quinin - hi ,no I'm not comfortable lying flat .

In bed I make myself a sort of nest with pillows behind me and an assortment of these
www.amazon.co.uk/Highliving-Half-Moon-Memory-Cushion/dp/B07639QQ9Y/?pf_rd_p=7da34691-fdd2-4c5f-8b6d-169e92629be0&encoding=UTF8&pf_rd_r=744QMSCG6B8CVG1DQKM6&pd_rd_wg=J5Ugx&ref=pd_gw_ci_mcx_mr_hp_d&pd_rd_w=smbHH&tag=mumsnetforu03-21&pd_rd_r=a7b7384a-569f-4a38-891d-126c3aab3914
which I have to support me at either side and behind my neck.
And it can be useful to position one under your knees to help prevent you slipping down .
Some people use wedges ,folded up duvets etc .

Dental chairs often need adjusting but this isn't a problem .I find backwash sinks at hairdressers tricky ,but I think this may be more due to the scar on my neck .

You're body will still be recovering from the surgery and dealing with chemo ,you must be so weary .I remember longing to lie down so that I could rest my head . Can you prop yourself up so that you are more on your side rather than lying propped up on your back ?You might find it easier to rest your head in that position .

Hi all, just had day 3 of radiotherapy. All going well, will catch up later as it's made me feel a tad tired 😴

HC x

Found a lump in breast yesterday evening. Family history, DM and aunt (DMs sister) both had it in their early 60s and survived it. I am early 40s. They were told there was no link between their two cases but they had same type, grade, size and location, so I’m unconvinced. I don’t know the type and grade but I remember it was aggressive.
I have accompanied a friend to the local breast clinic for exam so I kind of know what to expect. Concerned about being fobbed off by doctor. Going to go down there at opening and ask for urgent appointment and ask for referral. I won’t accept an ‘it’s normal go away’ response. I check them monthly so I know it’s not a normal lump for me.

@PineappleVision I’m sure your GP will take you seriously. If you know it is a change for you then the breast clinic are the best people to check that out.
I hope you manage to get hold of your surgery today to set that in motion.

@Acinonyx2 That does need some serious zenning. I hope the scan comes round quickly and finds nothing.

@SewingBees I hope chemo was kind to you yesterday.

I’m plodding along, bones don’t hurt as much as last week but I now have scabs up my nose and great big spots all round my nose and mouth. I’m supposed to be going to see Jenny Eclair tonight but I may need a paper bag over my head.

@MrsPnut The mouth & nose thing is overgrowth of staph bacteria in that area. Try an antibac cream or antibiotic one (Eg Fucidin). I think Jenny Eclair's fab - have a good night!

@PineappleVision How did you get on with your GP? Mine did my referral over a phone consultation, which I was very grateful for. They mostly seem to take it seriously these days.

@Acinonyx2 Sending zen vibes. Any scan date yet?

@HumphreysCorner I'm a month past rads now & have a square of sunburn on my chest that can feel a bit tender & hot. I'm longing for a deep bath so want it to go away asap. Keep up with the moisturising!!

@MrsPnut @HauntedDishcloth
Went ok thanks. Nurse called. Went in to see doctor face to face. Referred to breast clinic.

Greetings all. I’ve been lying low this week as I was wiped out by my birthday weekend. Energy levels are fluctuating weirdly.
We kayaked up the River Dart and camped out under the stars which was magical but since then I have ached all over. The BCN has said I can try a month off Anastrozole to see if it helps. I feel a bit guilty I haven’t just toughed it out.

@Quinin the Covid-19 is all around us. I am back in hiding for the time being but I spend most of my life outdoors these days anyway which seems to be safe enough. Good call to avoid Devon and Cornwall.

@Acinonyx2 I feel for you. Muttering It Will All Be Fine is the coping mechanism in this house. I hope time passes quickly while you wait.

@PineappleVision welcome to the friendliest thread. You are at the Keep Busy stage while you wait. Distraction and the Calm app were my friends. I weeded my whole allotment last year during the waiting time. It’s horrid but it doesn’t last forever and you will so much better when you know what you are dealing with. Sending hugs x

I’m feeling a bit mopey now. I’ve tackled all the boring jobs and paperwork and tidied up so I’m going to take a flask and some cake and go and peruse the latest crop of weeds on the Lottie. I am in need of a treat that doesn’t involve too many calories!

Regards to all

Top

I'm beside myself here now. I had a breast clinic appointment next Wednesday and I've just had a phone call from the hospital saying that they've had to cancel the rapid access clinics for 12 weeks due to staff having to cover covid wards, so they can see me in November I've said that's not good enough as my GP had arranged for the biopsies of my lymph nodes in my chest to be done at the same time.

The most disgusting thing is I can book privately to see the same dr at the same time for £1700.

My county won't allow my GP to send me out of area even though there are 4 other hospitals nearby who could see me, they're not in the same county as my GP so they can't refer there.

I'm writing to my MP because this is a death sentence

That's awful write to as many people as you can and make a big noise and hopefully this can be changed for you.

@Bakewellisntjustacake - that is some bullshit, I hope you are able to get that sorted out but there is no reason at this stage in the Covid game for urgent diagnostic services to be delayed again. Wow - and to not even offer any options?

I have a question for everyone, I guess for those who had a lumpectomy without reconstruction and no corresponding reduction on the other side - what do you do for bras? My breast lump has reduced quite a bit and if I size for the good side, the bra is too big for the bad side and the wire stabs my axilla. I also have a breast divot and something that would make that less obvious so I could wear a tshirt without worrying would be nice. Would a specialist mastectomy bra fitter be the right person in this case? Is there a good chain folks can recommend? (note: surgery not planned, so this needs to be a long term solution/adaptation)

@Bakewellisntjustacake That is terrible news for you and a really shocking attitude to a critical service. So frustrating too that it's a postcode lottery. I agree that you should make an enormous stink about it if there are opportunities to get a better service close to you.

I'm now 24 hours post my first chemo and feeling surprisingly ok. Last night was not pleasant - very bad headache, very nauseous and extremely tired but my mind was racing so I couldn't sleep. Felt like a very bad migraine. But the headache has eased and I've slept today so feeling ok now and have eaten. The steroids I took today will wear off soon so the nausea may return. I took the good advice of others on this thread and have been taking anti sickness meds whenever the nausea has hit and it has really helped.

@Bakewellisntjustacake I'm appalled at what they have said. You cannot wait that long. X

@SewingBees I remember my first chemo and was very sick until I rang the nurses and DH went and collected better meds. X

@HerbalRefreshment since diagnosis I've worn sports bras from Primark, cannot see me going back to pretty Lacy bras due to my huge difference in size of boobs. X

@TopOfTheCliff thinking about you today as my hair is growing and I now resemble you when you did the TV appearance. Big hug x

@PineappleVision any news lovely? X

@MrsPnut big hug to you too. X

Big wave to everyone else x

Have my last radiotherapy on Monday. Feels strange to have no more treatment planned. Planning DS 12th birthday 🥳 x

HC x

@ Humphreyscorner although my cancer affected different organs cancer made me feel that life was way to short for Lacey,wired bras and silly lacey knickers. I'm big comfy pants and sports bras all the way. I'm living that mumsnet favourite saying ' pull up your big girl pants'

Hi all. Have just caught up with the thread.

@Bakewellisntjustacake - I’m horrified on your behalf. Are you able to pay privately? I hope you are able to find a way to bring your appointment forward.

@Acinonyx2 - I’m interested to read about how Kadcyla is going for you. I completed EC and Docetaxel at the start of August. I have Phesgo till I don’t know when and a reconstruction next Monday. The oncologist told me that for someone with my type of cancer (her2 positive) it will be 50/50 whether or not I’ll need Kadcyla. I’ll find out at the end of September when they’ve got tissue sample results.

Best wishes to all of you xx