Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Thanks Chase and Purple
I'm not sure I'm eligible really as I'm getting Payment Protection from work, but they told me I should apply for the work-related component of UC, so that's what I'm doing.

I have an interview at the local job centre - although I thought that because I'm 'special' I shouldn't have to, and I've been told to bring a DS1500 though I have absolutely no idea what that is, and they haven't told me. My consultant and doctor have already filled in forms for my payment protection - do they have to do the same again for UC?

Also, I understand I should apply for a reduction in council tax. Has anyone else done this? I'll give them a ring tomorrow. One lot of forms is enough for today.

The DS1500 is a form your doctor can fill in to say you have less than 6 months to live. Don't panic! I've got more than 6 months but they will give you one if you're classed as terminal just to make life a bit easier for you with regards to benefits. PIP is not means tested so you can get that regardless.

Not sure about the UC or if you'll need the doctor to fill more forms in but Macmillan are really useful with this sort of thing and with the DS1500 your claim will be fast tracked and should be sorted within 2 weeks

Ah, thanks Purple got it.

Hope everyone is feeling as well as they can do today.

Just been for my appointment the cancer is non specific and ductal. It's 5cm so classed as large.

They doctor and nurses were amazing. We're waiting for the herceptin test to come back. The oncologists will meet to discuss me this Thursday then I'll get a call re going on for scans. Hoping to start with chemo then surgery.

Just checked on my local council website and typed in council tax reduction, I can get £26 a week off my council tax when I start claiming the ESA. If you check yours TQ and answer a few questions on there it should tell you if you're entitled to a reduction

Ah Ranout so sorry about your diagnosis but you've done all you can for now, waiting around for treatment to start is one of the worst bits. Try and keep busy to keep your mind off things. You'll find things will start happening quickly now. Any questions no matter how silly they seem please feel free to ask. One of us will be able to help you

Hi TQ. The jobcentre appointment may only be to verify your ID and provide other evidence. You will need to agree a 'claimant commitment' but that should be that you agree to inform UC of any changes in your circumstances rather than a full blown work search commitment.

If you get a DS1500 you won't need to attend any work capability assessments and would qualify for the limited capability for work related activity (lcwra) component from the start of your claim (unless your income exceeds the amount of UC you are entitled to)

Thanks again Chase and Purple. I am fortunate enough to be able to manage on the payment income protection payout from work, but if I am eligible for something I will take it and enjoy it with the DDs.

Ranout obviously a 'large' tumour is not good, but I don't know whether 'non-specific' is worse / better than other kinds. I do know that success rates are very high for bc and the whole treatment path is well polished now.

Ahhh ranout how are you coping?

So I’m an anomaly. I have two separate primaries (they think). I mean wtaf? Colonic adenocarcinoma and lymphoma. I’m have a CT guided lymph biopsy in my chest next Tuesday and chemo will start ASAP after that. No op for the tumour until they’ve shrunk the lymphoma but hopefully the chemo will shrink both.

Obviously I’m in a bit of shock (no shit!)

Frickin’ Nora.

Wilful ignorance (ie no googling) is the way to go I feel.

whatwould yes I now have a specialist nurse I can call, phew. I’m a bit concerned that I might just drop down dead but apart from that I’ll just get on with what has to be done.

I feel horribly guilty about what this is doing to other people.

Aw not you too tsonly, I was hoping someone would have had some good news today instead of you both having to deal with this.

Yes, stay well away from google. Pretty much everything on there is out of date anyway.

I promise you won't drop down dead, I know how scary this is and it will feel like forever before your treatment starts but try to remember the reason they don't start it straight away is that they need to come up with the very best treatment plan that they can for you and a week or so won't make the slightest bit of difference so try and enjoy the time before it all starts and look after yourself as best you can

Thanks purple
I’ll feel better when I’ve processed it a bit and stop collapsing in a soggy mess. I’m well supported by both family and friends. One foot in front of the other, remember to breathe in and out.

Thanks @purpleunicorns. Diagnosis could have been worse.
@tsonlyme as you say each day at a time. I've been told to let people help when they offer so I'll be taking up that advice.
We've told the kids. My 4 year old doesn't really understand which is fine but my 7 year old has lots of questions which I'm trying to answer honestly but appropriately.
In bed as I'm shattered. Tomorrow is another day.

Sorry to hear your news tsonly and quinoa

Hopefully they will be on it quickly, I know after my initial diagnosis I had lots of appointments for scans etc. It has calmed down a wee bit now my treatment has started ironically.

It sounds like you are being treated in a similar way to me quinoa as in chemo before op. Not sure what non specific means, do you know what grade it is? That is how different the cells are from your regular breast cells. Don't panic if they say grade 3 (as I did, I muddled it up with stage 3) it just means the cells are very different and I think more aggressive. Aggressive is not necessarily a bad thing either as it means chemo is usually more effective.

I hope you both have a good sleep. I went to bed early after diagnosis as my head was pounding (and then woke up in the small hours and decided to read all the Macmillan info then) try not to fret too much as they will hopefully kick into action quickly now you have a diagnosis.

What was your kids reaction to your shaved head purple? I know what you mean about scarves, I am sure mine only stay on now when I have practiced as I have hair, I expect it all becomes more tricky when you don't have any. The hats sound a good alternative. I got a couple of cotton caps from bold beanies (& my PICC cover) which are really nice.

Another nausea free day, just 2mo & then chemo again Thurs. I have stronger nausea meds this time, so fingers crossed there. When do you find out if you are ok to have chemo on Thurs too Leslie?

Good luck with your forms TQ

Waves & hello to everyone

Thanks Leslie.
That's what the consultant said which fair enough I guess but then they really shouldn't be all positive and making out everything is fine when they haven't even checked.

Sorry if I've come to the wrong thread, I'll go look where you suggested.

@noodles thanks for the reply. I think they said it was the least aggressive so it may not respond as well to chemo but I think after weighing everything up that's the best option for me.
Fingers crossed for your next lot of chemo and hope they get your nausea tablets correct this time.

Thanks quinoa

They did say to me that if I had the op first, the wait for the op is longer than it would take for me to start chemo, plus it would then take time to recover from an op so chemo would be further delayed.

Don't worry too much about the chemo side effects either (sorry as I know I have been moaning about my side effects) From what they have said to me I had morning sickness with my 2nd which made me more likely to feel nauseous after chemo too. Plus mine is hormone positive which may also affect the nausea.

*2nd pregnancy that is

Hi ladies
Sorry for radio silence, have been trying to stay away from all things cancer and pretend life's normal again.
Have a scan on Monday. Currently on holiday and taking lots of sun.

Have a question - I've been feeling pain on my left side (tumor was on right), very close to where the scar is. It feels like muscle pain when I press it. There was a bit of a bump on that area which comes and goes and I don't know if I should be worried. Not due to see oncologist till September due to holidays and unsure what to do. Also having a very heavy and painful period!! Any suggestions?

Noodles it's so nice when you start feeling a bit better, I remember having days where I thought I was going to feel rubbish forever. Fingers crossed different antisickness pills will help and you won't feel as bad next cycle.

My sons 16 so he's taken my hair loss ok, I think he's past the point of being embarrassed by me his words were "it doesn't look that bad" which I think is the highest compliment I'll get out of him. We've had fun with him trying my pink wigs on so I think that helped to lighten things somewhat and stopped it being all doom and gloom

Stitch don't worry about what thread you're on, if we can help in anyway then let us know. I'm sorry I don't have much advice on your situation

Dulce if you've had an op in that area it could be adhesions possibly. I think Leslie's our expert on that. But definitely go and get checked out just to put your mind at rest
Hope you're enjoying your holiday

Feel a bit silly posting here as people are dealing with such hard things and just getting on with it. I really want to be the type of person who just gets on with things but I'm just so worried about my mum. Perhaps I shall try and find a thread for family members supporting those with cancer as I think this one is for those going through it themselves. Best wishes to you all and thank you so much for taking the time to answer my question the other week.

Hi Mam
You should find this thread more helpful and useful to you - it's for those supporting relatives with life limiting diseases

Dulce as purple said, the pain might be adhesions. But if there's a bit of a lump it could also be a hernia. They're quite common after abdominal surgery. It's worth getting it checked out to set your mind at rest and also because you might need to do some exercises or wear a support garment.

noodles glad you're nausea free today :) I hope the extra meds help tomorrow

tsonlyme good heavens, you don't do things by halves do you?! good luck with the biopsy and hopefully you'll be able to get started on treatment quickly

ranout sorry it has been confirmed. It sounds like you are handling it just right with your children :)

Good luck TQ and purple with the benefits claims. I think I'm going to need to apply for PIP too. Not least because it seems to be the only way to get a blue badge, which I think I need for days when my breathing is bad. purple when you say Macmillan completed it for you, did they have the form etc or did you have to get that yourself? I'm just working out where to start with it all! I need to ask about the DS1500 first I suppose. I've researched and started it several times over the last couple of years but it's all so overwhelming that I give up. I expect that's deliberate on their part but the cancer costs are starting to add up and it's clear that I was delusional in thinking I'd be able to resume any sort of work.

TQ glad you're enjoying your Birkenstocks. I used to have a lovely shiny pair. Good plan on the nail varnish.

My adhesions were awful overnight and earlier today. I was meant to see my oncologist but I just phoned in. They are a bit concerned about my breathlessness so they've decided to refer my latest scan to the MDT. I'm glad I didn't wait around at the hospital for hours only to be told that. I'm approved for chemo tomorrow but I've decided to postpone. Morphine is helping but I don't want to risk being trapped in the chemo unit feeling like I did this morning. Especially if the paranoid oncologist is around as he would have me wheeled off to A&E!

I'll leave it there as I'm all doped up. My pupils have gone all pinpricky

Waving to everyone

Ah that's great TQ, thank you. That was the thread I was thinking might be helpful for Stitch too :) whilst there are obviously plenty of similarities, the experiences of having cancer and of supporting someone through it are very different so it's probably much more useful to speak to those who are in the same position.

Mam don't feel silly, this thread is for everyone so if you do have any questions or just want to rant then please feel free to pop back whenever you want. Did your mum get an operation date? As TQ says they'll be others in your position in the life limiting illness thread so they may have better advice but if not feel free to come back here

Leslie I just rang Macmillan and they put me through to the benefits section and a lovely lady took my details over the phone and sorted it all out for me, all I need to do is ask my consultant to send them a DS1500 and I'll get the pip paid into my account within 2 weeks

I know you said you didn't find Macmillan very useful but I would definitely let them do this for you, much less stressful than having to sort it yourself and they'll also go through other stuff to see if you're entitled to anything else.

Although the lady was so nice on the phone she had me crying again so maybe have some tissues handy

That's brilliant, thanks purple :) I think I'll wait until after my next oncology appointment as if it's progressed then they will need to change my treatment. Then I'll give them a call. It's good they have the form as I wasn't looking forward to having to phone up for that. It's ridiculous that you can't download it from their website it's good to get someone else to do it for you too as apparently it can negatively affect your claim if you are well enough to fill in the form yourself

I'm glad they were helpful. It seems to be mainly my local office that is useless. I will try not to go off on a rant but basically they contacted me a while ago (before my recurrence) and asked me to help with starting a bowel cancer support group locally. I put loads and loads of effort into it whilst the Macmillan person barely did any of the things she said she would (paid staff, not a volunteer).

I've also found that they often seem to take credit for services that are actually funded by other organisations/charities. Some of the "Macmillan" nurses are actually paid for by the NHS. I don't know the exact details, but Macmillan puts up funding for the first year or something then NHS takes over. I think they should be more upfront about that.

But it sounds like the benefit helpline is very useful. And the nurses are wonderful whoever pays them :)