Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

That's awful. Must have been a shock to find that out.

Is it true only private patients are offered the cold cap?

@Silkiebunny

That's awful, I'm so sorry you have to wait so much longer than they'd already made you wait, and also that they seem to be clueless about how important it is.

Would it be sooner if you travelled to other parts of the country? If that is even an option on the NHS.

There are lots of private hospitals offering it in the London area. You could be right that this is what they're hoping people will do.

There are two hospitals in suburban London have used for private consultants (when the NHS wait would have been far too long) and we've been very happy with the care there. We aren't insured, just pay per appointment. I can PM you the names if you're interested.

That might be the case in some areas I can't say, but I am an NHS patient and was offered the cold cap.

I gave up after the first two cycles (my own choice).

Thanks Top, Totheleft and Summer. I did enquire about going private before but it was 25k and then there's a second op after that. They told me privately here it's still in NHS hospital and 3 month wait but this is the fourth time they have called me in and each time they try to talk me out of having anything done and they grow the delay. Plus they weigh people and BMI over 30 they refuse. I am ok with that but it just seems these meetings are to kick you off lists and it's very distressing. I just feel life is on hold. I hate how I look. Its just a constant reminder of cancer. It also doesn't feel like treatment is finished until this is done but it's 2.5 more years to the end and already been waiting since Dec 21. I was never given option of immediate reconstruction with first op, I was told if wanted that would delay op for 1.5 months with cancer growing. But now it just seems it never ends. I hate my hair too. I hate these stupid meetings, they are so cruel, each time they add like 9months to wait and your hopes are dashed again. I just want to look like I did pre chemo and cancer and not see cancer and a deformed body everytime I look in mirror. I did tick option for anywhere else within 50 miles but seems to have been ignored. I might try phoning and see if anything can do. I would take implants over nothing. Its scary how bad the NHS is at the moment, there's pretty much no follow up either, thankfully oncologist kept me on so can call her if stage 4 symptoms but that will go soon. Poor DH has had me very tearful and hitting myself as I hate how I look so much now. I wish had not given up the job in London with private medical care.

Cold cap I wasn't allowed on NHS but people on 3 weekly were. I could have had if chose 3 weekly chemo but preferred weekly.

@Silkiebunny

How you are describing feeling about your body after treatment is exactly what my consultant tried to explain to me when I was asking about having a double mastectomy when they said lumpectomy.

It's seems so cruel to leave you feeling like this. I understand why you were hitting your head too ( been there done that myself in the past).

I wish there was something I could do to help.

Hi @Silkiebunny sorry to hear what you are dealing with. It seems ridiculous the way that you are being treated when you just want to move on.

Im also very unhappy about my physical appearance at the moment. I’m trying (in Australia) to move from the private into the public system, but the private clinic haven’t done my referral yet as far as I am aware. I asked them to do it a few weeks ago. It’s nowhere near what you are dealing with but I’m starting to wonder what is happening and how long it will take to get an appointment.

Anyway, you aren’t alone. I’m sure there are hundreds if not thousands of women dealing with this situation. X

PET scan at 1

I can quite easily go six hours without food, but the moment I’ve got to go six hours without food, all I can think about is food

😁. I have seven minutes left to savour this (decaf) coffee and then it's just water.

@Silkiebunny that is so unnecessarily cruel. They seem to have forgotten that they are dealing with an actual person here.
And yes, the ‘we are crap so pay for some counselling’ line is patronising to the point of insulting.

@Silkiebunny that sounds so cruel after everything you've been through, sending you lots of love, sorry know that's not much help.

@Tilllly hope your scan goes well today.

@Silkiebunny so sorry to hear that. Do phone around to find out if you can travel further afield to get it done. The 'get counselling' line is awful when what you need is surgery! The state of the NHS waiting lists is just unacceptable. I had a non urgent follow up NHS appointment for something unrelated to cancer yesterday (I was able to go private for the cancer treatment but not for any of my pre-existing stuff as only got insurance recently). It had been 3 and a half years since my last appointment for that issue! I had literally given up and decided to live with it. Was very surprised to get called up suddenly. They admitted they had forgotten about me..
@DollyDaisyDo thank you for your inspiring example. Thanks for dropping by. For anyone who has lymphoma, I can provide an example of being myself a 25 year survivor of that. The treatment (radio plus chemo) caused my BC diagnosis in May, but that same treatment did buy me 25 healthy years during which I met my partner and had two children (despite being told the chemo might make me infertile) who are now 19 and almost 17. Not sure of course how much time the BC treatment will buy me, but we'll see.
@TopOfTheCliff your cheerfulness is great to hear. It is useful to be reminded that there can still be moments of joy. As to the list of awful things, I have got used to seeing the faces of doctors as I go through my long list of shit. One forgets how bad it sounds until one says it all out loud and sees the reaction..

@isaxx I have a suspicion that my optimistic denial and relentless cheerfulness is a relic of boarding school survival and not altogether healthy but it gets me through and makes people round me feel better. I am looking forward to my Cancer Lifelines retreat to explore some of the darker undercurrents (if there are any!) If not I will just enjoy the food and the surroundings and a chance to have a proper bath ( there are no showers there apparently)
Love to all waiting for things to happen.
Top x

@Silkiebunny - I'm so sorry, that sounds very tough. My own treatment has been such a mixed bag, with some excellent, prompt care on the one hand, and some dismissive conversations and administrative cock ups, delays and frustrations on the other. Nothing as bad as your experience, but I have definitely found it's much tougher when you have a sense of injustice, frustration or despair to add to the inevitable psychological burden of going through cancer treatment. It's like a double whammy, and so hard to cope with. I've got cancer, just be nice to me, and take my needs seriously.

@DollyDaisyDo - I was just thinking more about your lovely post from yesterday. I was wondering - do you still think about your cancer and the fear of recurrence every day, or has it faded a little into the background over the years?

Thanks for the sympathy everyone, it does help. 😍

Dotty I find I don't think about reoccurrence now that often unless I have a reminder like someone else being diagnosed but that's not too bad now, mostly I don't think about it though I worry about the lack of checks. Not even given a symptom list to look out for. Checks I was offered on breast, lobular, often miss my type of cancer generally until stage 3 as it starts as a spidersweb not a lump. Though normally reoccurance for that type is after 5 years so just try not to think too much.

I did call back today, to see if I could sort any of it. Not that much but did establish if we need to move house to a different area you can stay on same waiting list and travel back but will be about 4 weeks after it of going in once a week. If you move to say Scotland and I presume Wales you wouldn't stay on list but it would be within England so OK. We could work round that. Implants again they repeated was similar wait but said I can ask that team but they didn't recommend that. Switching to a different hospital would be via GP and they don't recommend, they said similar wait and would redo tests again so possibly longer, GP also said no to that before. They said I am counted as having been on list for 6 months now - must take it from date of CT of abdomen which was April even though they added me in June. So presumably currently its another year to wait but issue is atm they said due to doctors strikes they are just doing immediate reconstructions and rarely taking someone from list. I did say I find the hospital meetings distressing and the doctor said he was surprised as apparently most women love hospital appointments but did say I can opt out and stay on the list. He also kept saying why does it matter when reconstruction is, argh.

On DIEP group on FB I saw people paid for private there and its £25k but then anything goes wrong and people are being forced to stay private and NHS refusing to help and also that's just first op and apparently there's a second op later, someone was at £31k for first op plus issues and counting. The doctor did say if go private and issues NHS should fix but I am very wary of trusting that atm. That is one reason not sure about implants, if they fail will NHS sort in 10 years or will it be sorry that's now private. Only good thing yesterday was had lost 1kg in a week and a half so 13kgs to go. He said my weight was fine but I would prefer it back to pre cancer again. Think will try not to think about this op and at least if I don't have the meetings that should help and just focus on reducing weight back to pre cancer and maybe get my haircut as still having chemo wild curls issues. I wanted to grow hair long but it seems to just grow out horizontally. Its about ear length now but I thought would be so much better than this a year and 3 months after chemo end but its the way its growing. It is getting less curly though but its so thick as well, about 2 inches or maybe more thick. And will go swimming today. And hopefully someone will finish our kitchen soon so that will be ticked off.

@Silkiebunny

My experience is that (at least at the hospital I am at) they are strongly encouraging immediate reconstruction along with the mastectomy at the moment.

They really tried to persuade me, saying things like I am still young (I imagine they meant in comparison to a lot of, or possibly most BC patients, I'm not actually young), and pointing out other advantages.

I stuck to my decision to go flat though, because after suffering terribly throughout chemo I simply wasn't up to a longer operation and two areas of wounds. I was also having complete lymph node clearance anyway, plus there were also other stressful things in my life at the time.

They said I'm entitled to have a reconstruction in the future. Reading your experience, I think I'd have to book it in years in advance.

Your husband is French, do you have any way you could get it done there via French healthcare? I don't know the exact rules regarding how long you need to have been living there. I've lived in different countries, and often thought of them as a back up if the NHS get even worse because they don't have waiting lists, but of course we aren't resident or working there any more so it'd be complicated.

I'm just so sorry the NHS is letting you down so badly with this.

I had an appointment today two weeks post radiotherapy with the consulant that prescribed it. Bit dissapointed really. He said its too early to scan to see whats happeing to the cancer and he has referred me today back to my oncologist CUP specialist) so, I feel once again in limbo. How long is this wait going to be? Where do I go to next will we have funding for immunotherapy or will it be more chemo? Or, like he said Im in a better position now then when I started with this whole thing so maybe it might just be a watch and wait approach. Still no sign of the primary. Its giving me such head mash. At this rate I might as well go back to work (I wont!)

I'm just popping in, very briefly before heading out, to let someone know I have a single new eyelash growing on my right eye 🤣 Had to tell someone & the girls faces would closely resemble 🙄 if I told them!

I hope all your days are going ok, I'll be back later to catch up properly 🙂

yay for the eyelash @lucysmam May it be an inspiration to us all!

@lucysmam get in there you eyelash!

@lucysmam

YAY! It's so exciting when eyelashes grow back!

Hi @dotty2 Im so glad my post helped.

I did worry for a long time re a reoccurrence, every twitch meant it was back but I had a double mastectomy and didn't have a reconstruction and so no breast tissue was left which, rightly or wrongly, made me feel better.

What, unsurprisingly, helped the most was after 5 years when my oncologist said that at that point my change of getting cancer again was the same as someone who had never had it before.

I had made a number of lifestyle changes by then, lost weight, wasn't drinking as much and have nearly cut out red meat, so feel a lot healthier.

What has also helped me psychologically is that my children are a decade older.

*chance of getting cancer - will we ever get an edit button?

No, at least not where I am. I've chosen not to do though as I don't want to sit around a hospital for any longer than I have to. There's no guarantee it will work either, but mostly, I just can't be bothered.

BTW, thank you to @lucysmam @Fantasea, @nappybrained and @RedRosesPinkLilies for shampoo recommendations. When the time comes (probably in a months time), will buy a selection and see how I fare.

Mazal tov!!!! 💅