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

So sorry that you are no further on TheHag, I really hope that you get some information this afternoon and that you are able to speak to someone who understands the effect this is having on you. Stay as calm as you can.
The travelling must be horrendous Daisy, I feel for you. I had to travel 45 minutes each way and by the end I would not have been able to drive myself (however my situation was different as I was having chemo at the same time). I was lucky in that DP took me there every day.

Hi all, I have had a rough week. Just when I was hoping to start feeling "normal " again my rheumatoid arthritis has gone through the roof. I'm in so much pain I actually feel much worse than I did on chemo. I've been round the houses trying to get it under control before my radiotherapy started today. I have painkillers but they are causing diarrhoea and nausea. Also had a steroid injection for which I had to make a 2 1/2 hour round trip and it hasn't done much.
So today was day 1 of 15 rads. My travel isn't too bad, about 40 minutes. DH took me today as my arm hurt too much to drive. The session was over an hour late, no apology and not one of the crowd writing all over my breasts actually introduced themselves or explained what was happening. They weren't unkind just oblivious to the fact that I was a person and it was my first time. Just been on a wild goose chase after a prescription and had to go to two surgeries and a pharmacy in two differet villages. Was ready to weep when I finally got the (wrong) tablets.

thehag welcome to the thread. I hope you fet some answers before your mri.

Daisy I have looked up your particular cancer and it is a rare one so I understand that there will be a lack of experts in your case so choice of hospital is unfortunately limited for you.
The hospital transport was offered to all those who did not have their own or could nor drive for any reason. Some women were picked up for the occasional visit but most were the daily Radiotherapy patients and mainly elderly and alone.
The disadvantage was that the return journey could have a waiting time of 90 minutes and take 2 hours for me being the last drop off.
And for people using their own cars or those driving them for the daily rads the parking was FREE.
It was north London and highly populated.
Our local hospital did do chemo but not rads..

Wish you all the best

Oh @Skap I am sorry you are having so much pain, and that you had such a bad experience with your first rads treatment. Prescription problems must have been the last straw. Hope you are able to rest this evening and get through the night ok.
@TheHagOnTheHill hello and welcome, and I'm sorry you're having to go through this horrible anxious time.
Good wishes and sympathy to all who are struggling. I'm not coming into the Patience so much atm but still thinking of everyone.

Skap - sorry to hear you are feeling bad, and I hope you get the pain under control soon. I'm also surprised by the way you were treated in radiotherapy - every single person I've met so far in the unit at East Surrey has been friendly, courteous and caring, and I was very much hand-held at the start of the treatment so I knew exactly what was going to happen. I thought they were all like that! Currently they are doing a lot of teaching, so there's often a third person in the room being shown the ropes, but they always explain to me what they're doing and check I don't mind. They have only delayed a couple of my appointments out of 18 to date, but grovellingly apologised each time.

Daisy - ahh, that makes sense re: choice of hospital.

Feeling tired today, but I expect it's just an attack of Monday-itus.

Had a total meltdown today...The director of care at the specialist hospital has refused to allow my operation to go ahead at their hospital because I'm from out of the area which means I have to be transferred to another hospital and be put on their waiting list. They were going to take away all my treatment protocol and make me start all over again from biopsies! I had a complete meltdown. It's rubbish, postcode lottery! Went to gp threw a fit. Now continuing with my treatment but still referred to another hospital for surgery...god knows what the wait is xxx

@Skap my 5 yr old has RI I feel your pain. Hope you find some relief soon.

@Skap Sorry you're in so much pain. Hope this fucks off for you. Xx

@Hippiechick162 Can they do that? Why the hell did they make you go through all this only to just try and palm you off? Not surprised you had a melt down I'd have lost my rag too. Hope they can get this sorted out for you xx

I won't bother updating you all with my shit. I've been betrayed by someone who's overcome BC themselves. Wasn't aware cancer was idle gossip 😡 I'm going in tomorrow for the genetics testing then it's another 4-5 week wait to decide what surgery I'll be having as it'll depend on the results. Oh the joys! It's not even started yet and I'm fed up of everything.

Sending you all positive vibes no I don't care if I'm being twee. Xx

I've been AWOL for weeks, because I felt well, and when I feel well I like to pretend I'm not in the Cancer Club. Then I felt awful, with building dental pain that became agonising, and didn't feel like posting then either, because I felt too shite to join in.

I found out last week that my cancer (Stage 4 Breast Cancer on diagnosis in October 2018) has spread to my jaw.

My teeth are all loose, and my jaw bone is visible inside my mouth.

I have become a yoghurt connoisseur .

Meeting on Wednesday to plan next steps.

I can't help but feel that I'm on the downward trajectory now though.

Good morning everyone. Let me introduce myself. I'm a 44 year old single parent. Have 2 grown up children and a 14 years old. So here is my story....

I had electric shock type pains for a day or two early January. They were f frequent and so painful they took my breath away. I knew I had to check my breasts, I've always been a bit hit and miss at checking them. Ran a bath, gathered the courage although I knew I'd find something. Found a hard, immovable round lump in my right breast. I read and read as much as I could. Got advice from forums, read reputable websites. Everyone tried to reassure me that it was probably a cyst. I had a gut instinct it wasn't and stealer myself for the worse.

The two week referral was agonising. I wouldn't think positively as I knew it was cancer. Was seen at the breast clinic yesterday and after a 4 hour appointment, 3 Separate rounds of mammograms, a scan, 6 biopsies and markets in two lumps, the consultant told me in a very stony face way that she's confident I have two cancerous lumps and there are lots of little lumps they aren't going to test. She said the good news is, from the scan, that they think it hasn't spread to my lymph nodes. Shellshocked I came home and told my family. Broke my children's hearts. My friend stayed last night as I was too scared to sleep alone. I have to go back next Thursday for the biopsy results. I'm so so scared and I'm convinced I'm going to die. Please help xx

@BoF - I wondered where you had been. So sorry to hear your update. I hope your pain is getting under control, and they come up with a plan to tackle this, or at least make you feel better.

@lm753, huge hugs. It's a long journey, but you can see from this thread how many people are gettng through it and coming out the other side. They are an amazing support, if you need it. It gets less scary, believe me.

@BitOfFun I hope you're ok. I know what you mean with pretending you don't have cancer. That's one too. Hope they get a plan in place for you so that's you're able to eat properly and feel better soon xx

@lm753 Welcome. Have they given you the options for surgery etc? Plenty of advice and support here. It's been a god send for me. Xx

@Skap sorry you're feeling so shit, that's miserable. And sorry too @BitOfFun, and I know what you mean about pretending you haven't got cancer. I do that so much and I get cross when I can't do all the things I normally do (or used to do I should say).

@Hippiechick162 I'd have had a total meltdown at that too, that's unbelievably awful. I nearly fell apart when I called the hospital towards the end of the two week referral to find out what was going on, only to be told that they'd referred me back to my GP and I had to call them. What the hell. It was horrible and made me cry. So I can only imagine how you feel.

@lm753 - it's horrible to go through this, I would say keep asking questions and I hope that once you have a plan you'll start feeling less bad. The not knowing has been the worst part for me.

TheHag I agree that it is better to feel angry than soul destroyingly sad. And anger is always better "off your chest than kept inside festering". I too have been fobbed off so many times and that is infuriating especially in regard to cancer treatment being delayed or wrongly diagnosed.
I have waited since 2015 for an MRI scan originally for sciatica which was refused and could possibly have found my bladder cancer in the early stages, as it was November 2018 when eventually I had to go through an invasive and for me very painful cystoscopy to find the cancer GP was convinced I did not have.
Since then I had the 1st 2 ops cancelled as they assumed mine was in the very early stages but at the 2nd op in March I was told I needed chemo and Radiotherapy as was muscle invasive.
I was so angry that it had been caught much later than was necessary and it still is not over and need more ops, but have never cried over it.

My back has got worse and last night I got out of bed after 3 hours sleep and felt like a stone statue and my right toes are paralysed.
DD phoned GP about my need for an MRI scan on my lower back and
I had a phone call from a secretary to say that GP had agreed to do a referral but it will be at ,least 3 months

Oh dear
Sorry about that long rant, it wasn't meant to be.

digerd it sounds as if your rant was more than justified. You must be so very angry at the delays you have endured and with the knowledge that delays are likely to have made things much worse for you it is no wonder you are angry. I would have thought that with your history your GP would have made an urgent referral especially having delayed before because they were convinced! If they are so able to diagnose without recourse to specialists or tests why aren't they running the NHS!!

There seem to be a number of posters here at the moment whose treatment has been less than ideal to say the least. The possibility or reality of a cancer diagnosis is awful, to be facing delays can only make it unbearable.

@digerd scans seem to be a long wait at the best of times but 3 months sounds extreme. Can you get any pain relief that helps?

@CointreauVersial are you in week 3 of external rads? How are you doing?

@Hippiechick162 unbelievable administrative chaos. The NHS is not joined up in any way at all. I've had to travel to three hospitals, only one of which is really a specialist. I wish I had known at the beginning and asked to be referred there but of course at the beginning I was convinced it wasn't cancer.....Your poor little 5yo has RA? How awful. Is it managed well?

BOF I'm so sorry to hear the news. I do hope the pain can be managed for you.

@Nonotmenori I'm sorry you have been let down by a friend. I have found that a couple of people I thought of as close friends have disappeared and others who I didn't know so well have been kind and supportive.
In general I am finding that six months down the line people have probably had enough of me and I'm afraid of boring people. It's a shame because I actually feel worse mentally and physically now than I have throughout most of my treatment.

@lm753 I'm so sorry you find yourself here but you will find this a very supportive thread. Feel free to rant and rail on here. Lots of posters with breast cancer who are at various stages of treatment and will be able to offer advice. We have all felt that fear. It does go away, it comes back from time to time but once you have a detailed diagnosis and a plan most people seem to feel better. There are many variations of breast cancer which have slightly different treatment options.

Waves to @Bloodybridget how are you doing?

Day 2 of radiotherapy was much better. No delay and nicer people who helped me to get more comfortable on The Rack.

@Skap I am so pleased your second day was better .

I am waiting for a call back from gp as I know I have a UTI again . ( wet myself throughly twice this morning as wasn’t able to get to loo in time . ) we had to go into town to sign our new wills and I thought I would be ok and , luckily, had a change of trousers etc with me . Just in case of dire-rear ! I had dipped my urine this morning and it showed blood , leukocytes and protein on test strip.
Feeling wretched of course and trying to tell myself that it’s ok to miss the Paclitaxel but don’t really want to miss another.
My mind is whispering what if you really , really need this one .
The gp surgery rang and said I need antibiotics but have given me 7 days I have asked if I can have the three day one that I had at the start of January .

Sorry I can’t tag everyone in but I feel so foul I am just going to have a little weep and go back to sleep .

oh my word i can’t believe how badly you all seem to be treated! @digerd i’m so sorry you had such a long wait. and @Trumpton i really hope you get the uti sorted out. they are fucking miserable at the best of times. and it doesn’t sound like you are in the best of times.

it all makes me feel very lucky and grateful that (so far) the marsden has been brilliant. @Skap it is so shocking that the technicians walk in and draw in felt tip on your breasts without talking to you. that’s just so awful. years ago i was really sick after surgery (not cancer) and had to stay in bed and a very tiny nurse would come in and wash me like i was a car. it was awful. there was another nurse there who washed me so beautifully, and talked to me, and made me feel human again.

i’m reading an amazing book at the moment, when breath becomes air, by paul kalanithi. he’s a neurosurgeon who was diagnosed with terminal lung cancer at the age of 36. he describes the process of becoming a patient, how you stop having any agency and just become an object that things are done to. he writes it much more beautifully than that of course.

i’m feeling very tired and emotional (not a euphemism) and ive only had three doses (out of 30). i feel like i’m wading through treacle and i can’t imagine being on the other side of this. ive got rads every weekday until 5 march and it seems so long away

@CointreauVersial I was East Surrey too. Their radio team are fab and it's quite swanky in there especially compared to what I call the cancer waiting room in out patients - you know the longer thin waiting room C with depressing booklets in it.

@BitOfFun So sorry. That sounds absolutely shit. Face pain of any sort is horrible. Gentle hugs.

@DaisyBD If you are West Sussex, I'm surprised they didn't offer you East Surrey. I had my ops at Crawley and other treatment at East Surrey. Free car parking for radiotherapy and chemo. Fight the good fight for parking the rest of the time! People do say The Marsden is very good.

@Flyingarcher i think it’s because my cancer is so rare (sarcoma accounts for only 1% of all cancer and there are now thought to be 150 different subtypes, all with differing treatments and prognoses) and the marsden is the nearest specialist centre. i don’t mind the inconvenience i guess if it means i get the best specialist treatment - although ask me again in six weeks and i might have a different view

@Flyingarcher - yes, it is quite smart, isn't it? I don't know about the cancer out-patient waiting room, because any consultations I have had have been in the equally swanky new Gynae unit.

@Skap - I'm feeling surprisingly good, thanks for asking. Apart from mildly grumbling guts I have suffered no ill effects really. On one hand, I feel a bit of a fraud, being on this thread yet feeling so well, but on the other hand, if I can reassure anyone that radiotherapy won't necessarily be as bad as you imagine, then that's a good thing.

Am feeling shattered right now, but that's probably because of the three hour committee meeting I just endured......off to bed I go.

I've got the meeting with various doctors tomorrow afternoon. Please pray to God or The Fates for me that it's possible for me to have radiotherapy rather than chemo 🤞!