Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

I got so excited I forgot why I was here. Still no reply to email and messages about blood tests, however I received an appointment for a neck scan on the 24th not sure why. I brought myself a day book and have a long list of calls to make Monday. I have tried to stick my head in the sand over this but realise this is not a good thing, normally ask my lad to nag when required.

Good news I can take a break from my course on Medical Grounds, all work till this point stands and when I feel like I can restart I can

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Somebody asked about free prescriptions. Mine were sorted by my CNS on my first appt I think I signed a form and then she sorted the rest. So I would ask the nursing team to organise this for you . In the meantime if you do have to pay for anything ask the pharmacist for a receipt and explain that you are going to be claiming back your prescription cost

All the info about benefits and allowances is really useful - thank you so much. I have a couple of additional questions if anyone knows the answer?

1. I prepay for prescriptions at the moment as I have monthly medication for my Bowel disease. I've been given a payment exemption form by my breast cancer nurse - will this also cover my other medication? So, basically, should I cancel my prepayment certificate?

2. I've been given a wig prescription. Can I use this anywhere, or does it have to be a particular wig place? (Don't actually want a wig but DS insists.)

Also, frivolous question: I have always wanted to dye my hair purple but never had the guts, as I am about to lose it anyway, I thought I might give it a go. Is there any reason why I shouldn't? (Vaguely wondering if hair dye is bad for cancer patients, or something.)

AlbertCampion - all of your prescriptions will be free. I also used to have a pre pay certificate. I phoned up and cancelled it - and got a refund.

For wigs, I would ask your Macmillan nurse where you can use your voucher. In Manchester where I am, you could use it in the Christie wig shop, but there were a few other specialist shops you could also use it in. I went to one of them as they had a better choice.

As your hair is going to probably drop out in any case, I would go for it! Go mad with the colour! I don't think there's any reason not to, but might be worth checking with your Macmillan nurse?

Have a lovely weekend everyone.

Just to add re free prescriptions, if you need medication for longer than 5 years (in my case for breast cancer, 10 years), you can renew the medical exemption certificate. You need to contact your GP and they will sign the form for you.

@shiningstar2

That's an interesting question. I'm the opposite to you. A routine monitoring scan for an ovarian issue picked up my colon cancer. The blood test - Ca19 - which is most accurate for my sort of ovarian tumour, mucinous, not serous, is more commonly used to diagnose pancreatic cancer.

So the short answer is yes. But they only know the connection exists for some rare genetic cancers. Lots of research still needed.

I'm not a medic but anecdotally it seems to be quite common for post-menopausal women to have different degrees of thickness in the linings of their uterus or polyps, like the one they found in your colon. So they do a hysteroscopy and take a sample. Any thickening would have shown up on your CT scan, so they booked you in for the hysteroscopy and TVUS, which is just to get a different view of your pelvic area. It's v crowded down there, not all neat and tidy like the diagrams in textbooks.

Sorry - have no first-hand experience of hysteroscopies. Hoping someone else can help with that. Good luck with your appointments! We'll be thinking of you.

@AlbertCampion I was going to dye my hair bright green - but then I was so pasty I thought I would look like the Joker 😁

For anyone who has, or is about to lose their hair...I have 3 unused turbans which I am happy to post out to you. I realised I am more of a beanie hat person (or woolly hat as now is the case). Just let me know and I shall send one of my minions support bubble to the post of office

Thank you for all the help and advice ladies xxx

@Zorgothslugofdoom I currently have a pre-payment certificate and it hadn't occurred to me to get a refund so thank you, once I have the medical exemption sorted out I will do that.

@Zorgothslugofdoom Hope your work situation works out.

The work/money side is quite a worry. Half my income is from hourly paid work which I've had to drop straight up and the other half is on contract - that employer is OK - I'm hoping to work through to surgery but if I can't I'll just have to go sick.

Dh's job is a whole other saga we need clarity on - if we could get that sorted it would help my anxiety a lot. Is it going to be axed due to pandemic-related issues or not - should get an answer soon hopefully.

Money/work worry on top of illness is too much stress.

Hello all.
@Shrillharridan nice to see you again, although I'm sorry you still have no dg or clarity re eye issues. I hope the follow up on Monday is useful. It is rubbish that this has gone on so long.
@shiningstar2 welcome to the thread, I see the very wise and experienced Thymeout has given you useful feedback and information. I didn't have bowel issues prior to my ovarian ca dg last year, so can't be helpful, but I hope everything turns out fine for you, and whatever happens you will get plenty of support here.
@user675761 I quite understand that it's worrying having to wait another six months while being anxious about a possible spread of disease. I wonder if there's a GP at your practice who has a particular interest in cancer, that you could talk to? Perhaps you could be reassured, if this approach is absolutely standard?
@nixnjj sorry you are still having to chase re blood tests etc. And nearly three weeks to the scan! But it's good that you can take time off from your course.
@takeyourmarks hope your next immunotherapy treatment is not too gruelling. I agree the new lockdown is tough, I was sad to see the shops shut again when DP and I were out the other day. Hopefully it will just be a few weeks, and will make a difference.
@Zorgothslugofdoom glad to hear your work situation is so much better.
Sympathy to all who are struggling with money, work and other practical issues.
DP and I must have done something bloody awful in a past life. She slipped in the street yesterday and has an ankle fracture. Six weeks in a cast, then a surgical boot for another six, apparently. We live in a three storey house, I'm starting chemo in nine days time. Her very wonderful DS who lives ten minutes away by bike is coming round to help her get downstairs in the morning and upstairs for bed. And we do have plenty of other people around to help - but no-one can really solve the mobility issues, which are the most worrying.

@Bloodybridget Very sorry to hear about your DP. I hope her DS can perhaps make some adjustment's to help (no idea - I have an image of a basket on a rope up and down stairs...). There should be some law against partners having health issues at the same time.

Sorry to hear that bridget

@Bloodybridget really sorry to hear about your DP, what a worry for you both

Have been lurking as not in a place to offer anything helpful but I just wanted to say to @Bloodybridget that this is shit on top of shit and I hope that the help you get eases things. Why do these things happen to good people? Will this affect your transport to hospital. ?

OMG @Bloodybridget I am so sorry to hear about your DP. What absolutely terrible timing and how worrying for you both. Is there any way you can find temporary, one-level accommodation for a bit? When my mum broke her foot she ended up moving into a trailer for six weeks which made things easier as she also has a townhouse with incredibly steep stairs. I'm so sorry you're going through this.

For all those who have mentioned their money issues, I am sending lots of sympathy. I have had to give up tutoring which was an important side-line for our finances. Fortunately, my other job is being incredibly understanding and supportive, so we'll survive with some belt-tightening, but I can't imagine how awful it must be to go through cancer diagnosis and treatment with money worries as well. I have everything crossed that things work out for you.

Oh thanks for all the kind messages - I hadn't even thought of finding somewhere else to stay, @AlbertCampion, we are in inner London, I think it would be much too expensive, and very complicated. DP's son is an occupational therapist and assures me that she will get much better at moving around, with practice. @gillmoregirl yes, the plan was that DP would drive me to the hospital for all appointments and I'd get cabs back; now it will have to be cabs both ways - which I can afford, but it adds up! Oh, life was so simple pre-pandemic!

Just popping on briefly to also my support to @Bloodybridget. So sorry to hear of your recent news and wish your DP a speedy recovery and all the best with your treatment 💐💐

As others have said you have provided so much comfort to others which is much appreciated x

Ah yes, @Bloodybridget, I guess finding alternative accommodation in inner London is much more difficult! The transport thing must be very frustrating though. It's a cliche, but it never rains...

Thank you for the welcome Bloodybridget. Really sorry to hear about your dp's accident. I hope she is active again asap and that you can get hospital travel plans sorted.

Thank you for the very detailed reply Thymeout. It is interesting that your diagnosis came the opposite way around to what seems to be going on with me. Ah well I should know more soon as I have the transvaginal scan tomorrow and the hysteroscopy the following week. Just hope the results don't take long. Best wishes to all on this thread.

Oh bloody hellfire, Bridge, that's terrible timing- your poor DP! And you, of course. Sending you powerful love and stairlift vibes xx

Hi all, I’ve be been lurking on this thread for the past week, found a lump in the side of breast/under arm last week been referred by go to breast clinic for appointment on the 19th, I go from hardly thinking about it to the depths of impending sense of doom.
You are all amazing and I feel ridiculous burdening you guys with what could be nothing but am currently in one of the uncontrollable crying points.

@Bloodybridget how is your DP today? I have been thinking of you and hope you are both managing in the circumstances. What a pain about the taxis, you're right how they add up.

@shiningstar2 hoping your scan goes well tomorrow. I am finding the waiting very drawn out and hope you don't have to wait too long. For me, it all seems to depend on the outcome of the MDT which meets on a Wednesday so if my biopsy results don't 'catch' this week's meeting, then I am pushed on to the following week

@14yearsandcounting welcome to the thread. I am quite new here too, awaiting confirmation of OC and I too have days like today where I seem to cry all day long. I wish I could offer some advice for this - friends say to distract myself but it is with me constantly and I feel overwhelmed with it all. Everyone who has lived the horrors of all this say that the waiting is the worst part. I was reading about breast appointments on another thread, is yours one where you get all the tests and results on the same day? I hope it is the case for you xxx.

Hello and welcome, @14yearsandcounting, the waiting stage is horrible, of course you feel very scared and pessimistic at times. As you'll have seen, there are very many women on the thread living with breast cancer, you'll find lots of support and advice for as long as you need it - which I hope won't be long!

Thanks to all for your sympathy! DP is learning to get around a bit better with crutches or walking frame, we're doing bedtime tonight without the help of her DS, wish us luck! Two days down, feels like far too long already! I had to watch Mamma Mia - Here we go again this afternoon to cheer myself up (totally ridiculous, but made me laugh).

Thanks Fizzyorange. I'm a bit nervous about the transvaginal scan because I think they will also take a biopsy. Nothing to what so many on here have had to put up with. Think the waiting for results so long must be awful Fizzy. Hope the results come soon and that they are what you are hoping for.

Hope everything goes ok Fourteendaysandcounting.

Good luck with doing bedtime without the help of dp's ds tonight Bloodybridget. Think I might put a musical on tonight.