Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

Digerd you certainly have had a tough time and falling and bashing your head was just the last thing you needed. Good to hear that you havent done yourself any serious damage though.

On waiting times, I have been very lucky and very pampered. We have always had private health insurance through my DH's work packages and two or three years ago he added cancer care to the insurance almost on a whim. I have been very grateful for it. It has meant that the longest I have had to wait for anything was the results of the tests on the tumour following surgery and that was one week to the day when I saw the surgeon to check on the wound recovery.

I think some of the waiting times that you and others have had to endure are horrendous and my experience shows that this is not because of how long the testing takes but because of the strain on resources to get the testing done. Yesterday I had my echo and went on to see the cardiologist immediately after, he had the results up on his screen and talked me though them there and then. I know it is not the same for all tests where lab work etc is done but with technology there is really no reason why all echos couldn't be organised like that.

We often say here that it is the waiting that is the most stressful thing about cancer and I am sure that is true of lots of other conditions too.

Resources in the NHS are strained to the limit. According to the politicians promising the earth ion this election campaign there is loads of money available to improve this situation. I hope this time that they actually get on and deliver ton their promises and don't forget about the nhs as soon as the election is over

Hi all, just catching up and hope you're all doing ok. Sorry for the recent diagnosees (if that's a word). Just to recap - I was diagnosed with sarcoma at the end of nov and had surgery nearly two weeks ago, now waiting for follow up to see if i need radiotherapy.

i'm feeling really bleurgh at the moment. I'm so tired and i've lost 4kg since the surgery, which is not long ago and i wasn't overweight to begin with. i just can't seem to eat as much as usual. i think i got through the first week of diagnosis on adrenaline, plus i was so relieved to finally have a plan and some information, i actually felt better than when i was still waiting to find out. and now i'm crashing.

i'm at home by myself most of the time, DH is working and our five dc are either teenagers and out most of the time or older and not living here. i'm too knackered to actually do anything or see anyone but i'm lonely and bored and tearful, but when i do see people i get so tired. it's freezing and wet, i get in rages all the time and i've convinced myself i've got metastases everywhere. DH was wanting to book our usual holiday in cornwall for next autumn with the kids, and i said well i might be dead by then anyway. and he replied well if you are we'll take your ashes in an urn and chuck them in the sea. I shouted at him and started crying, although as one of my friends pointed out, if it had been the other way around i'd have said the same to him.

i feel bad for feeling so miserable, i know it's not a competition but everyone else seems to have so much more to deal with than this and i feel feeble and pathetic.

Daisy, please don't feel bad.
Of all the things we can't control while going through this shit, how we feel is one of the big ones.
I'm sorry that you feel alone. Keep posting here - rant, cry, throw things, it's all allowed.
We are here, we are listening and we get it

meercat23 My sister now has private care but paid for by NHS, a friend and DD also has this arranged by NHS GP.

At A&E DD and I waited ages to be seen and others who came after us went in long time before. DD suddenly had enough and went to reception and asked why? The reason given was that they prioritise for those with heart problems so DD said I do have these and have been deemed to need a HDU bed and had expected the previous walk-in centre dr who referred me to have explained the reason. But there was nothing on his letter.

I just keep saying It could be worse. If I do need the A&E again must remember to mention my heart problems. I assumed it was due to my age as I have not had to fight like I do now.

Must find out what entitles NHS patients to private health care paid by NHS.

I heard on the news about the ever increasing waiting lists for ops on the NHS. However, I am grateful that I had a brain CT as routine for head injuries and hope the brain being good means no signs of dementia as that runs in the female side of DM, but my memory with all the stress recently has not been good.

My last radiotherapy session was end of June and although the pain I had down below has subsided I am still exhausted from worry and waiting so long about the 2nd cancer which is not supposed to be
a nasty one but has been left at Insitu stage since discovered last March. The 2 different cancers needed different treatments.
Also they will be looking at the area that had the muscle invasive radiotherapy treatment.
Politicians have always been full of empty promises and excuses.

The only qualifications for being an MP is the ability to side-step answering the questions is seems to me.
Good luck.

CT scan was fine, and what a lovely bunch the radiographers are (good thing too, because I'll be seeing a fair bit of them)!

I do have private health (through work), but all my diagnoses and tests were done on the NHS and I really can't complain about the timings; it all moved pretty quickly. I first went to the GP at the end of September, was referred within the "magic" two weeks, and two weeks after that I had had all the necessary tests (MRI, ultrasound, hysteroscopy and biopsies) and had my diagnosis. The hysterectomy was another two weeks after that, but at that point I went private, as I fancied a bit of in-patient comfort. For the RT I'm back with the NHS, because the treatment, the hospital, the consultant and the timings turned out to be identical for both.

One issue with private is they can't really cater for things going wrong, or any complications. A week after my hysterectomy I had a haemorrhage, and the private hospital who did the op waved me smartly down the road to the local A&E.

Back to moan.

Another bloody strep throat.

But I have caught it faster this time.

I had my Picc line done and my last Nivestim (for this round) this evening, the rahter wonderful DNurse from last night had made me an appointment with DR at the integrated care at the hospital.

He was lovely but a bit old school, my temp was 36 point something, I said oh that is annoying it was 35.4 this afternoon, he very gently said a low temperature can be just as worrying.

I came home and googled...Hypothermia kicks in when it goes below 35 C. No wonder I am always cold.

Naomi, you've just reminded me to take my temperature!

I was diagnosed with Stage 4 Breast Cancer in November last year. It's ER hormone positive and HER2 negative, so I've been put into menopause and have monthly injections. This is to treat/contain the cancer, as there's no good ending to Stage 4. Which makes it frustrating when people kindly wish me a speedy recovery. What on earth do you say?

Still, I feel reasonably well at the moment. I'm aware that I'm already halfway through my likely life expectancy, but I can't really imagine that far ahead.

Morning all! Very sorry to see several new people here since I last posted. Welcome and commiserations to @MiniCooperLover, @drinkingeggnogoutofamug, @RiveterRosie and @whatagoodideahesaid.
MiniCooper and drinkingeggnog as others have said, waiting for appointments pre diagnosis is very hard, hopefully you will both be seen and have more information before Christmas.
RiveterRosie two months is a really long time to be in hospital, no wonder you are feeling rotten, especially if you're still coping with pain. I had four hospital stays over the course of surgery and treatment and needed to talk about it a lot - do you have people who will listen to you, without trying to "cheer you up" or minimise what you've gone through? If not, might you see if you can access counselling?
whatagoodidea being diagnosed while pregnant must have been an awful shock, I hope you get excellent care and that you have good support IRL.
Digerd poor you re fall, glad you weren't too badly hurt! Do you know why you passed out, has it happened before?
catnidge, how was it going back to work?
Zorgoth hope the chest infection is continuing to improve and that you haven't had any new problems! When will the port get sorted out, if there is a blood clot can they deal with it at the same time? (No doubt I am displaying shocking medical ignorance here.) Good to know you had such good care at the Christie.
Brassica brilliant to hear that your chances of recurrence are so low - and hurrah for reappearance of hair! Hope rads treatment goes smoothly.
Trumpton sorry you have been poorly and had to go to A&E. Hope ABs kick in soon. I suspect with your enthusiasm for Christmas preparations and activities, you've been overdoing it! Congrats on chicken windfall though! I wonder if MN could devise a toast and marmite image? I would use it constantly.
Skap shame you are getting such a bad skin reaction to chemo - I tended to get a flushed face for a couple of days, but nothing like yours. Have chemo nurses got any advice?
Naomi how are the bowels now, and your throat? Do you think latter is a bug starting?
elspeth could you not get an earlier GP appointment, as a cancer patient, if you want to ask about getting antidepressants? Worth a try, I reckon. Sending
whatonearthisthis hope endoscopy and colonoscopy were ok yesterday, you'll be glad to have them over with.
meercat glad to hear you can continue the Herceptin.
Cointreau how was it going back to work? Hope you got al the information you need at the briefing yesterday.
Daisy so sorry you are feeling lonely and miserable. Being alone so much doesn't sound good. I guess you don't have many friends around who are able to call in for short visits? Is your DH understanding about how you're feeling?
BitOfFun glad to see you posting, I hope you feel well enough to have some good times. And that there are people with whom you can talk openly about your situation - whatever you need to say. I, like most of us here I imagine, have thought about what I would need if my cancer became incurable, good listeners would be very important, I think. Hope you don't mind me talking about this, please let me know if I am being insensitive/ inappropriate.
I am still in Glasgow, we're going home today. It's been brilliant seeing the DGCs and other family. DGD who is 8 was flatteringly delighted to see me, they all came to meet us at the station as a surprise and she ran to us for big hugs (she used to be very uncuddly so this is a novelty!). DGS has been fantastically excited about his birthday which was Monday, and they've both been lovely. We will see them again in London just after Christmas. My mouth is finally better, thanks Brassica, I am feeling fine although neuropathy in my feet feels worse in freezing Glasgow weather!
Warm wishes to all at the Patience Inn. I'm going to order a coffee and a mince pie later, do join me!

Cointreau. Good point about private not being able to cope if things go wrong. They offer a lot but don't even pretend to offer the open all hours service the NHS has to provide.

Naomi. Sorry too hear about the strep throat. I hope the fact that you have caught it early means that it will soon be gone. I was lucky not to have any infections while my immunity was low from chemo etc but they are a nasty extra blow that you could well do without.

BitofFun I can imagine the frustration you describe. I also think that I would struggle to know what to say back to them.

Bridget It sounds as if you are having a great time with family. Interesting that your neuropathy is feeling worse in the Glasgow cold. (Nowhere does cold as well as Scotland!). I have mild neuropathy in my toes and finger ends. It really is mild but I have been noticing it more in the past few weeks and if my feet get cold my toes are definitely worse.

Trying to get myself organised for Christmas. Over the years I have grown a set of traditions around Christmas including a madly over decorated house, a huge seafood pre-Christmas feast (so that the family can all be together around Christmas but they can be free to do their own thing on the day). This year I don't want them to feel that I am not well enough to do it all but I definitely don't have the same energy levels. I have discovered that Christmas decorations thrown together in a couple of hours rather than a couple of days of painstakingly careful placing look just as good!! I am hoping that the same principle will work for our pre-Christmas lunch this coming Sunday with most of the stuff bought in ready made.

I still have gifts to buy and my brain and imagination are definitely not working as well as usual. I think they might all just get cash this year. I do enjoy Christmas a lot but this year I just don't have the energy for it all.

Morning all, apologies for not linking to everyone's name separately but I'm new to the thread and reading everyone's stories. My Dr told me to wait 2 weeks on Friday just gone before I contact the hospital if they didn't contact me, on Monday I had a letter saying call by the following days date and yesterday and today there's a phone message saying no one is available to answer the phone today but we'll call you and be aware there's a backlog. I know if this is the beginning it's going to be a long process but the waiting to start 'something' is mentally tough already. 😳

Bowels are working, but last nights doctor referred me to the hospital for bloods, turns out that my nuetro phils are point 2 anything over one is acceptable. Currently waiting to see if they will admit me.

Either way I am heading out to the Royal Surrey for the wig appointment, I have promised to come back if needs be. 😂

Will update when I have more battery.

Thanks BloodyBridget. Being back at work is nice.

I'm starting to come out of the closet about my cancer, having been extremely non-specific about the reasons for my absence from work, but that's mainly because I now have a positive story to tell. Of course, most of my colleagues are men, so really don't want to know! DD1 is home from uni tomorrow, so we can finally tell all DCs together.

I'm a bit worried that I started bleeding again yesterday; only like a light period, but I could do without it. I suspect I didn't do myself any favours galloping along the mile-long hospital corridors yesterday, as I was late for one appointment. Also being poked about during the CT scan, as they hunted fruitlessly for my empty bladder with the ultrasound thingy. Am forcing myself to stay sitting down and do LESS today. So difficult when I feel normal. Tranexamic Acid is on standby if another haemorrhage threatens....

@BitOfFun - nice to see you. I think we have a friend in common in RL (well, she is on MN too). I guess when people wish you a speedy recovery they mean well, and are hoping there are some "ups" for you as well as "downs" in the road ahead. Glad you are feeling OK at the moment.

@meercat23 - I doubt anyone would begrudge you a slightly more low-key Christmas than usual. Can you sub out a few tasks? I'm fortunate that this year is a quiet one anyway, with just my DPs here (so seven in total for Christmas lunch). DM will roll up her sleeves and take over anyway!

@BloodyBridget
I had an unsuccessful Pre-op appt today as they postponed the admission date from next Monday to further advice from the anaesthetist as Cardiologist 's report was insufficient. Concerned about my passing out last Saturday and my heart problems.
I have passed out before 10 years ago, though, and the same thing was taking painkillers on an empty stomach and being dizzy beforehand. I have managed to not need painkillers since then as was very scary. But my back pain was horrendous and getting worse and in desparation took 2 nurofen plus at 6am.
So back to waiting for a further pre-op appt.
@ Cointre
I've had my bladder looked into and biopsied with rigid Cystoscopies which need GAs not even a CT showed much if anything inside.
That is what I have to go through again to check on the cancers in there. Good luck with your Rads.

A day of highs and lows and holding my breath.

They took my blood the nuetrophils were .3, sat there for hours waiting for the more in depth results to come back.

Eventually said to the registrar, who was hell bent on admitting me I am going to the Royal Surrey for a wig fitting, if you want me to come back I will, but I am not missing this appointment.

He reluctantly allowed me to leave, I was halfway home when he called to say that the in depth test had the reading at 1.7.

They like them to be between 1.5 and 8(in an ideal world) he told me to stay off work until Monday, and to sleep as much as possible.

My BF picked me up from the house and we went wig shopping, me being me, gravitated to the most expensive one, without knowing the price, but it really really suits me and we are saving a fortune on wine.

I was determined that I wasn't going to buy a private wig, but the NHS contribution is shocking.

So all in all a good day, back on the bloody ABs and Nystatin, but I have a good wig.

I rang my cousin and said hello, she said you got a good wig didn't you ?

I said I only said hello, she said yes but you sounded like you.

The lowest point was forcing a caramel shortbread in,(for calories) needing a tissue, putting the shortbread on my lap to get one out of my bag and coming up with it stuck to my jumper.

Sorry to see so many new posters here, though welcome to the best club that no one wants to join

My outpatients is tomorrow. AFAIK, all routine tests (including ECG and fasting cholesterol test) were normal. The tests to see if I have a further mutation should be back (‘further’ because it’s already known I am Philadelphia +).

I’ve written an email to the specialist nurse (after she said it was OK to do this) saying what I thought of the risks associated with the candidate drugs. My opinion is always going to be bottom of the list of considerations though!

Also asking if alcohol is OK or banned!! Permitted on current drug, so hoping still OK in whole family of drugs.

‘ I said I only said hello, she said yes but you sounded like you‘

Lovely comment!!!!

@CointreauVersial, sorry to see you here too! Drop me a message and we can confirm our RL connection!

Thanks everyone for the kind comments- I really am okay. It might seem bizarre to some, but this is probably the happiest I've ever been. I feel surrounded by love, and that I can properly appreciate it.

@NaomiFromMilkShake my BF came wig shopping with me. We went to a tiny place that runs an online wig company and only sells face to face locally. She was so kind. I had sent photos in before so she could see my hair and there were a selection of wigs waiting for me (sans price). She made it fun and I came away with a fab expensive wig. In the end I also got a wig from the hospital. They charge a flat NHS fee of £72 regardless of the price of the wig. My "NHS" wig is actually my favourite though I only wear them when going out which is seldom ATM.
A few days ago I was feeling pleased that since starting chemo in spite of everything I manage to sleep 9/10 hours a night except on treatment day. It's 2am and I'm still awake thanks steroids. Just a pity it wasn't tomorrow I could be watching the election coverage
I have a gynae appointment tomorrow as I had a scan of ovaries in October and they found something untoward on my cervix. I have not allowed myself to think about it until today.

@Skap you posted at 2am about a gynaecologist appt tomorrow . Is that today Thursday or tomorrow Friday? I find early hours posting confuses me about days .
Whichever I am sending you good wishes for your appointment .
Bloods here today and I haven’t felt well all week . Just low grade yuk that I am putting down to whatever floored me last weekend . I am sure that my 6th lot of antibiotics since August aren’t helping .well obviously helping my health just not my general mood .
I haven’t even rung the wig people as not up to doing that .
But.... DH took his mum shopping into M&S yesterday and I tagged along and managed to see the annual Santa Dash and lots of friends in the sunshine which lifted my spirits .
Lots of shabby pains in boob that has the cancer ,must mention it today .

Off to make a cuppa ....fresh ginger and lots of lemon for me .

Hello have been reading your stories and it's good but sad to know there are others in my position or similar so I hope I can join in. I have garde 1 invasive ductal carcinoma, and I er and pr +, and hr2-. Surgery Tuesday and still awaiting genetic results as there's lots of breast and ovarian cancer on my mum's side. Have had mammograms over 20 years but the recent one didn't pick this up, so I I found a lump.
I have felt horribly low and scared, but I my dad died earlier this year and I feel very alone, still grieving. Friends have been great thankfully. And I start some counselling next week.
I'm struggling to get my head around how much a change in lifestyle will help, amongst other things.
Love and warm wishes to everyone going through this.

rumred Hello and welcome. Hope we can help, lots of us on here with breast cancer and at different stages to you with diagnosis and treatment. Mine wasn't picked up on mammogram either and I found a lump. It sounds like you have caught it early. What surgery are you having on Tuesday? Sentinal Node Biopsy? Lumpectomy or mastectomy?
Anything you want to know about hospital - what happens, what to take, just ask.
get my head around how much a change in lifestyle will help honestly unless you live an outrageously damaging lifestyle I would forget about that and concentrate on doing whatever you have to do to get through this. Beware of crooks and quacks and well meaning people trying to flog you cures or persuade you to follow their miracle diets. As to google, we all do it but I recommend the UK based Breastcancernow.org

@Trumpton you've had a rubbish week haven't you? Do make that wig appointment. I posted about wigs last night but suffice to say that all the people I dealt with were doing the job because they had lost hair through cancer. They were unfailingly kind and sensitive. Take a friend who will give an honest opinion of what looks good.
I finally dropped off at 4am [tired emoticon]. Appointment is this afternoon and I have dodgy tummy....

Thanks @Skap I'm having a lumpectomy and sentinel node biopsy. General anaesthetic. Then waiting for genetics info before the next move I think.
How long were you out of action after the op? I'm self employed so not earning at the moment. I have savings fortunately but that means no benefits
How are you doing now?

@rumred my surgery was in August and I'm now on chemotherapy. I have other health issues which probably legnthened my recovery but essentially I was wiped out for a week then slowly back to normal after about a few weeks. Some nerve damage in the armpit and arm is quite common though it mostly clears up. It's also a possibility that they don't get a clear margin around the cancer and have to repeat the surgery.

Chemo cancelled for tomorrow as bloods not good enough and also as I am on antibiotics .
The nurse assured me it does not get added onto the end of treatment and it won’t affect the final results . Got a cracking head ache so off to bed .
I agree with Skap @rumred about the lumpectomy and sentinel node but I had removal . Is that what you are having ?
Mine was very troublesome but I have had absolutely no side affects from it .
Feel free to AS my posts from September but remember we are all different ! Best wishes .