Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Oh @Babamamananarama That's dreadful! I don't know what I'd have done with myself in your shoes. Tears wouldn't have been enough. I'd have felt like punching a wall, like someone in Eastenders.

Don't know if any of you have been following the Hospital documentaries on BBC2. They started pre-covid in Liverpool, I think, as an overview of the NHS, good and bad. I remember the bed-shortage coming up early on. Then covered the pandemic as it affected the Royal Free, when they nearly ran out of oxygen.

Now it's the covid back-log and its effect on the normal workload. Set in Coventry. Shortage of ICU staff and its knock-on effect on surgery - cardio, cancer etc. Juggling priorities. Does an aneurysm trump stage 4 cancer and what about the child living with unbearable pain who needs a new hip?

I suppose somewhere in the chain of demand there must have been a reason for messing you around, but so difficult when it's you who takes the brunt of it.

Btw For those who are not squeamish about watching surgery, there's a lovely patient with Stage 4 ov ca whose consultant manages to get her an appointment with the woman professor in London who specialises in operating when others have shaken their heads. (I referred to her when @thereisonlyoneofme was wondering whether to go ahead.) She couldn't remove all the disease which had moved on to her bowel, little cancer seeds the size of a grain of rice, but hopes to have extended her life by years, rather than months.

Best wishes to everyone else. One day at a time. @TopOfTheCliff - lovely to hear about your maritime exploits. Cheers me right up.

@Thymeout We watched that last night, I cried but then I have always been a crier.
I have been incredibly lucky that my treatment has continued all through lockdowns but my heart ached for the decisions that were being made in the show.

@Littlestelephant welcome to our lovely friendly thread with the kindest ladies on MN. I was where you are with OC before Christmas, I just wanted it to go away and sometimes wondered when I would wake up from this bad dream. The part where you are in limbo is truly the worst and I felt so defeated and sad but once you know what your treatment plan is, you will feel so much better. Lots of us have BC and can reassure you with all your questions .

@thereisonlyoneofme I had my fifth chemo (out of 6) today for OC four weeks after my surgery and am also concerned that it feels so early as I am definitely still healing. I'll be thinking of you tomorrow and hope we are both ok.

@Babamamananarama oh you poor thing, this really is unacceptable. I would have cried too and in fact have cried at the majority of my appointments. We are so dependent on the service they provide but there seems to be no consideration whatsoever that we have other things going on in our lives apart from being a cancer patient - things like children, families, financial concerns because we are too ill to work, plus feeling awful physically and mentally from all the treatment. I have had to put up with 'attitude' from surly receptionists and nurses and it is so upsetting xxx

@Thymeout I have recorded that programme and have read a lot about Professor Fotopoulou and her willingness to operate on ladies with OC who have been turned away for surgery elsewhere. I will have for a day when I feeling strong to watch it.

@TopOfTheCliff how lovely to hear about your boat! I remember we were all talking about sailing with you in our pirate scarves swigging rum!

@MrsPnut
Yes. That poor child. Such a difference when she was finally pain-free.

Fizz Deffo one to pick your time to watch. Just after good scan results would be best. I used to be on the Ovacome site and her name often came up. She sounds v generous with her time.

@Thymeout I am on a FB group for OC where I first heard about her. I have watched some of her videos on YouTube and she seems so kind, calm and knowledgeable. She also looks very young to be a professor! Several of the ladies on my FB group have been operated on by her and speak very highly of her.

Oh my goodness @Babamamananarama that is just awful and I'm not surprised you lost it. I would make a complaint about that, frankly. The further I get with my treatment, the less tolerant I am of being treated like I don't matter. Sending you lots of sympathy and strength for the coming days.

@TopOfTheCliff it is so lovely to hear about your boat! I have a deep longing to see the sea - it has been so long. Hearing about your trip out on the water has made me determined to get to the coast this summer.

@HumphreysCorner So sorry to hear about your PICC woes. They do seem to go wrong a lot! The blood Bath sounds horrendous!

@JeanLannes So sorry to hear about your DF. Hope everything goes as easily as it can over the next few days.

@Littlestelephant welcome to the thread. I am 45 with one DS and I was diagnosed with BC back in September. I had a lumpectomy and then a second op for scrape because they didn't get it all. I didn't have a scan beforehand (I don't think - it seems so long ago!) but they did think it hadn't spread to my nodes. But when they operated, it turned out it had gone into one. I've done six cycles of chemo and now radio. It is hard and scary and unfair, but you just have to put one foot in front of the other and just get through it. Having young children adds an extra dimension of worry to it all, but I have found my DS has been very resilient. I'm so sorry this is happening to you. It sucks.

I started radiotherapy today and it was great. After everything else I was expecting it to be horrible, but just lying there holding my breath was actually very relaxing! The only thing that makes it difficult is the journey (different hospital to my local ones) and the parking, which is an absolute nightmare. So for ten minutes of radio I have to leave over an hour each way. V frustrating!

Meant to say, sending love and good wishes to everyone else on the thread. Sorry not to mention everyone by name - I am popping in less frequently these days and it moves very quickly!

Down to earth with a bump today. It’s raining and I’m sitting waiting for an ultrasound of a new lump in my armpit. I’m being brave getting it checked out. They muttered about a biopsy which would really mess up my day. I’ve scheduled an accordion playing session and a weight training class later!
Regard to all
Top

Hello all, I'm way behind with the thread. Just read through and sending a warm welcome, and sympathy, to @Llioed, @JingleJum, @MadamBuxton, @feelinggeriatric, @Starface, @Orangesandlemons82 and @Littlestelephant. And welcome back to @Jenthefredo - so sorry you have more worries now and that the injections haven't helped.
@ChocolateandCheese the first time my chemo was postponed (low neutrophils in my case) I was outraged. I came to realise they would be postponed more often than not! But it is pants, I agree.
@Babamamananarama what a shit show - that's absolutely rubbish. I hope you're in and sorted now.
@ChickandLamb good luck for your surgery next week. Also to @backformore.
@HumphreysCorner hope you are feeling a little better today.
@JeanLannes sorry to hear about your DF. I wish him a peaceful end, and strength and comfort to you and all your family.
@AlbertCampion how's work going? Are you glad to be back?
@thereisonlyoneofme I'm starting on niraparib on 28th. I've never had heart or BP problems but am still pretty apprehensive about it. You were asking upthread about getting copies of letters from consultants to GPs - the first time round in 2019 (surgery and chemo) I got them every time, but this time I think I've only seen one, so I wonder if they're not sending them to GP, or not copying to me?
@quinin I'm very pleased to hear your news re "no evidence of disease". Hope you stay as well as possible for as long as possible. I got spots after chemo, and the skin on my fingertips is still pretty bad nearly 8 weeks after the last treatment.
@Lizdeflores I have total location envy, seeing your photos! South west England?
@Vinorosso74 how did your appointment go yesterday?
@BadEyeBri congrats on finishing treatment and on your lovely new furniture! At least it wasn't a house .

I see a lot of us are eating rather too much and concerned re weight gain, so I'm in good company.

I have to go out in a minute, but briefly, I have cancelled travel plans for July apart from three days in York. Highlands, an hour's drive from the nearest hospital, felt stupid.

Love and good wishes to all!

@TopOfTheCliff good luck today, hopefully it's just reaction from your surgery. I'll keep my fingers crossed

@Bloodybridget lovely to hear from you and thank you. I feel well but my stamina has gone completely. Diet and exercise plan start on Monday but I'm having this week off to wallow a little

I watched the Hospital programme last night, and it really brought home what goes on behind the scenes to get you into hospital. I hope that the lady with OC recovers well and has a good outcome. I wish we could have an update in future, but doubt it. The Professor mentioned is one that is regularly recommended on the OC forums.

Home now with an assortment of cake to comfort me. All the cakes I bought look weirdly like boobies.
I had two biopsies in the end "just to be on the safe side" and had a meltdown and cried my eyes out. They were very alarmed and had to fetch my lovely BCN who let me ramble for a while and arranged to ring me with the results next week while I am mother-sitting. This is a shit show to be sure. I will hold on the the promise of sailing away from everything just as soon as I can.

@BadEyeBri have a good wallow! Sometimes it is the best way.

@Bloodybridget sorry about your Scotland plans. You will get there eventually!

Thanks for the welcome @Bloodybridget. First day of treatment for me after having a port fitted yesterday. First of three cycles of EC in progress as I type. I’m in a cold cap with a heat pad on my tummy and I’ve just eaten pie and mash for lunch so enjoying the buzz from getting started with my treatment although I’m aware the buzz is unlikely to last...

Hi all
Bloody Bridget yes South West England on the Bristol. Channel a little town made famous by the sea swimmers in the BBC idents before programmes. I don't see the appeal of swimming in water the colour of chocolate where high levels of e coli are regularly recorded, but each to their own!
The pandemic and illness has forced me to explore closer to home and yesterday we went to some beautiful wall gardens in Mells in Sommerset. I saw a majestic red kite and passed some peaceful hours in the beauty and remembering BOF. Also eating pizza and cake which I'm sure she would of approved of.

I also watched hospital I was struck by the amazing prof in London.I also think the work of the surgeon in Coventry needs to be recognised as well. She clearly had a very strong professional and emotional link to the woman she was caring for and she fought for her and didn't give up.I found this extremely reassuring,were not just names on a set of notes. Thank goodness for medics who will fight for as long as they can and refer on if they can go no further.
I have always thought of my cancer as a big black evil looking thing and was surprised that it's actually a delicate yellow. Of course it effects are far from delicate and it remains black and evil in my mind.

Fizzy and theresonlyoneofme I had chemo 4 weeks after surgery and started Bevacizumab on the last one and It was fine, homeward stretch ladies.

It grey rainy and stormy today and I'm supposed to go running tonight, say something encouraging to me to make me go🏃x

I have managed to get myself admitted to blooming hospital. I had a bit of a temperature this morning and it didn’t go back down so had to come in for bloods and IV antibiotics. I’m neutropenic and have to stay overnight at least.

Ooh sorry to hear that, @MrsPnut. Hope they are being nice to you, and that you get home tomorrow.

Oh dear @MrsPnut get well soon x

@TopOfTheCliff So sorry to hear about the biopsies - I hope the booby cakes helped a bit!

@MrsPnut, Hope you're home soon and recover quickly!

Surgery yesterday went well - surgeon was happy with what she got (what remained of the lump and surrounding tissue and a few nodes - not an axillary in the end) and I'm not too uncomfortable now, though just a bit fuzzy still from the anaesthetic. The bit I'd been dreading the most (the radioactive tracer dye shot) was actually fine, perhaps because I'd put on Emla cream in advance, and perhaps because I was still a bit numb from the freezing they did when they put in the wires.

Kids though it was hilarious that I had green wee this morning! (from the blue tracer dye). Now just keeping everything crossed that I don't have to go back for more surgery any time soon and can just get on with radiation next month...

Oh @MrsPnut hope you feel better soon. 💐

@Lizdeflores did you go running? Horrendous weather here.

@MadamBuxton how are you feeling after the Red Devil. I'm feeling a tad better 2 days after and lots of sickness meds.

@TopOfTheCliff thinking of you after the biopsies, hope the results come through very soon.

@BadEyeBri I know I need to shift 6 stone but keep putting it off. Wallow as long as you like.

@Bloodybridget York will be lovely, Highlands another time.

Big wave to everyone else.

HC x

@MadamBuxton how are you feeling after the Red Devil. I'm feeling a tad better 2 days after and lots of sickness meds.

@HumphreysCorner I got home feeling a bit smug that I felt pretty normal but I feel a bit off colour now. Slightly nauseous and an odd spaced out feeling making my head feel strange - not sure if it’s the after-effects of the cold cap or the drugs or both. I must admit I feel nervous about what might be to come but I don’t want to talk myself into feeling crap.

Oops I didn’t mean to tag myself in there I was trying to do that thing where posters show what they are responding to!

The call of sofa,a can of cider and a magnum were much more alluring than a cold wet run. Oh well there's always tomorrow.

@Lizdeflores you're my kinda woman, that sounds a much better plan

@MrsPnut take it easy Missus, your wee body just needs a breather, it's been through a lot. Will keep you in my thoughts even though I know you are tough as they come x

I have eaten my own body weight in butter chicken and rice. I have never known hunger like it. Has anyone else got this? I'm assuming it's my regular cells repairing themselves after the radio.

Just back from Chemo, my hospital has a large area taped off as a sink hole has opened ! Apparently its not the first in that area.
I was miffed because when they weighed me I weighed a lot more than on my scales. Im sure theirs are wrong
Used the cold cap this time hoping to rescue whats left of my hair. Crossing fingers

Hello!

@Bloodybridget Work's going ok, thanks - although I am a bit nervous about balancing it with radiotherapy. It's nice to have something else to focus on, though! I'm sorry about your cancelled travel plans. Sounds like the right thing to do, but still gutting.

@TopOfTheCliff Got everything crossed for you. Don't blame you at all for crying. It must be hugely stressful and scary.

@MrsPnut Oh no! So sorry about you being admitted. Hope they sort the neutropenia swiftly.

@backformore yay for the successful surgery! I'd be interested to know how long your blue dye lasts. I still have a blue breast, more than six months later - I am starting to wonder if it will ever go!

@thereisonlyoneofme I had a similar thing when being weighed - I hated those hospital scales by the end of my chemo!

@Acinonyx2 have you had a fast day today? I was doing so well and then found a bar of dark Tony's Chocolonely. So I may have slightly slipped. But not horrendously - I reckon I am still eating far less than normal. I started Tamoxifen with my radio on Wednesday, and I am terrified of gaining yet more weight! I honestly resemble a potato on legs. I hate catching sight of myself in a mirror at the moment.

Waving at everyone else and hoping everyone is doing as well as can be hoped.