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.

@TopOfTheCliff I know what you mean about the jokes and the crying and I do lots of both. I hope you've had a lovely evening at the pub tonight.

@Lizdeflores I feel deeply ashamed that I've 'let myself get into this state' but hope I will feel the same admiration as you do for my body soon. I pleased the consultation with the oncologist was so encouraging, that is good news.

@Acinonyx2 I also feel decrepit, one bit after another of me seems to be falling apart. Sorry to hear about your shopping trip, with so much on your plate it is just another thing to go wrong. I sometimes think what else can go wrong and I can truly relate to the feeling of thrashing around on the floor like a toddler. I used to be deeply embarrassed of crying in front of anyone, let alone strangers, but I no longer care anymore.

I can really relate to the complex feelings about bodies as we go through this. I have felt really crap about my self image for a few years now, then when I think of losing my hair, eyebrows and eyelashes and piling on yet more weight I can't bear it. I'm not at all an image-centred person and I never judge other people for their appearance - so I can't understand why I feel so embarrassed about my own. It feels so shallow and I know it doesn't matter in the grand scheme of things but I do feel pretty devastated thinking about what is to come.

Hi everybody

I hope you're all ok and hanging in there. Sorry for silence this week...I've been feeling better so have been pottering around the house the house.

I came to King's for bloods this morning. They are still recovering nicely, so much so, they whipped my Hickman line out today. I'm now counting the day for when I can have a soak in the bath again.

They've also reduced the frequency of my visits to once a week for now - my CNS expects that to stop in a couple of weeks too, after I've had my 6 week post discharge check up. Will have a PET scan in December in advance of my 100 day rebirthing appointment.

The big news is I'm allowed out for a walk. Though I won't be going far until my legs work a bit better. But it all helps with building my strength up again.

Sending lots of love to everyone- especially if you're starting chemo, having a procedure, or just having a crap week. ❤️x

@AlbertCampion I feel exactly like this. I am not a glamourous person by any means but I like to be clean and tidy and also have never judged anyone for their appearance. Now the fluid is off my front, I feel more comfortable but I have a swollen stomach at the bottom which is where the mass is and this is troubling me. I am wearing a baggy cardigan to keep it covered up but it is upsetting me.

@InOtterNews that sounds like good progress and hope you enjoy nice walk today and a lovely bath very soon. Can you shower with the Hickman line in? What does 'rebirthing appointment' mean? I feel I have so much to learn very quickly.

@FizzyOrange yes you can shower with Hickman line - you just need to keep it as dry as possible. I've had some kind of line in since march so looking forward to spending at little longer in the bathroom.

Rebirthing refers to my stem cell transplant day. It's when my immune system is reset to that of a baby - so it's now my second birthday 👸

Great to hear this @InOtterNews. Perhaps we might meet after all. If you get as far as the town centre, I'll be the person sitting in one of the raised flowerbeds because I've run out of steam and the benches are full of germy teenagers, or having a row in M&S over the lack of chairs for convalescent shoppers. With their demographic, you'd think they'd have cottoned on by now.

@Apocalyptichorsewoman. Wondering how you got on. Don't answer if you're taking a break from Cancerland, for whatever reason.

@InOtterNews I'm so pleased to hear you are doing well!
And to @Lizdeflores with your good response to treatment, did the wine go down well?
@Acinonyx2 I think you did really well to not completely fall apart in the shop, but go home for your wallet and get the shopping. I suspect I would have had a tantrum. How's your DH now?
@TopOfTheCliff hope the pub outing was good!
Much sympathy to all who are struggling, with appearance, frailty, anxiety, drug side-effects, whatever.

Hello to everyone. Tiny when compared to what everyone is going through but life is frustrating. Went for Blood tests, nothing on record and no reply from emails and messages. Mind is playing nasty tricks on me and I might fail as course I'm really keen on passing. Parenting has been a bit crap too. Need telling to pull myself together and it could be a lot worse.

I think I'm what you would call 'low maintenance' but all the same the prospect of being fat(ter) bald and sick looking is depressing. At leas these days, I'm not really going anywhere.

Dh seems to have developed a kidney infection after the failed op and been quite poorly but has antibiotics now so will hopefully be back on cooking duties soon. I floated the idea of helping out more with dd

@nixnjj The accumulation of smaller things on top of The Big Thing are like the straws on the camel's back.

I'm afraid I had a bit of a meltdown today. Perhaps steroid rage, I don't know. But I got so frustrated with my husband, who is generally a saint, but so very stuck in his ways. He basically doesn't do anything unless I tell him and then nag him five times, and I don't have the energy to do that now. So I let rip and threw in the fact that I need to know that he can step up in case this bastard cancer kills me and he has to do everything solo. Like, raising our son.
Total meltdown, and out of the blue. What is this cancer thing doing to me? Sometimes I don't recognise myself.

Just had to tell someone. And now I've got a lot of grovelling to to...

@KentishMama Maybe it needed to be said - maybe he needed to see how seriously you need him to just do stuff without being nagged. Go easy on the grovelling

Popping in to say hello and hope everyone is doing as well as possible. I'm supposed to be starting a phased return to work from Monday, but my line manager (horrible person) is currently trying to overrule my doctors, occupational health and our disability team by wanting to put back my start date. Given that I would drop to zero pay on Monday if I don't return, i really want (and need) to restart. So frustrating and stressful that someone with no medical training is trying to overrule the medical experts! Trying to hold it together, but my anxiety is through the roof. This is on the back of my line manager strongly suggesting I take voluntary severance, and trying to downgrade me. Have checked and we have legal advice as part of our house insurance, so will be calling them for help tomorrow! As if life with cancer isn't stressful enough!

Blimey @Zorgothslugofdoom that is really horrible, how shocking and depressing that employers can behave like this! I wonder if any of the cancer charities could also advise you - Macmillan?
@KentishMama I agree with Acinonyx that you shouldn't feel too bad about blowing your top. Having to keep reminding another adult about things that need to be done is ridiculous and infuriating - and isn't it interesting how the word "nagging" is used so much more of women, hmm!
@nixnjj missing records and lack of response to messages is not tiny, it's hugely frustrating. And it must be very hard trying to keep up parenting standards while coping with cancer - you won't win Mum of the Year every day but you're probably not Cruella de Vil either!

I realised this morning that I'd miscalculated when I might get through chemo, I'd thought early May but if no delays (ha!) it would be early April, wouldn't that be brilliant?

Hope everyone has some good bits in their day, today.

Finally received my follow up appointment from my ultrasound I had on my neck lymph nodes 4 weeks ago.
Consultant is happy to recheck them again in 6 months time as even though there has been a change in texture thyroid cancer is slow growing so they don't see it as a worry at the moment.
I thought I would feel relief that I don't have to have anymore surgery but I just have this constant worry that it is spreading.

@user675761 oh dear, what a worry for you. I am new to this and now have a better understanding of the constant worry and need for reassurance that cancer brings.

@Zorgothslugofdoom what an absolute disgrace! It is truly shocking that any employer would behave like this. Did you have any luck with the legal team with your house insurance?

I have been worrying about money today, I have a lot of expenses for travelling to the cancer centre coming up. I have been on the Macmillan site and it seems that I can apply for Employment and Support Allowance even though I don't qualify for any other assistance. Has anyone else applied for this? Also, can anyone advise me please how I go about getting a medical exemption for free prescriptions? Is this a GP organised thing?

Hi everyone,
(Its me yoikes)
Glad too see some familiar names. No hippiechick???
So....Eye still not right :(
I suppose I was lucky that I got the FA and IG angiography done prior to lockdown in feb.
I had a follow up in June which was pointless. Asked the Dr what he thought was wrong and he just shrugged. It isn't AMD so he lost interest.
Got a 2nd opinion. He recommended 3 monthly scans which hasnt happened (due to covid) hospital can't say when I'll be seen. Possible amelanotic nevus which needs monitoring.
After feeling like crap all summer I went to the gp who did bloods. Turns out I'm folic acid deficient so am on a large dose for 4 months daily.
The eye dr told me he was recommending a neurology referral to my gp but he hadn't so had a chat with the gp and she did a bupa referral.
So I had a virtual consult and a contrast head MRI on Monday.
I have a virtual follow up appt on Monday next week.
I'm so fed up.
This has been going on for 11 months now. I seem to have spent the last year constantly worried or waiting for tests/results. I know you guys get it.
I'm very tired, and am feeling low level ill all the time. Horrific stomach cramps yesterday for some reason.
Sorry. What a whingy post!
Hope you are all coping with the 2nd lockdown

Hi everyone. I've been lurking here since July and I know what a supportive group of people you are. I hardly like to ask for a bit of support myself when I am only at the getting tested stage but Bloodybridget has been kind enough to say that the site is for people at the getting scans ext stage as well so here goes.

I was put on the two week pathway a couple of months ago. I first had a ct colonoscopy due to a positive fit test and some changes to bowel movements. I then had a colonoscopy with a pre cancerous polp removed and booked in for a follow up colonoscopy in a year's time so all good on that score.
However the ct scan picked up some irregularity in my womb lining and I was referred to a Gynecologist at the same hospital. I never received a letter explaining what the issue might be, just two quite quick appointments. One, this Monday for a transvaginal scan and one the following Wednesday for a hysteroscopy. I am a bit worried about the fact they have booked me in for the hysteroscopy before they have even seen what the transvaginal scan might show. Wondering what the ct colonoscopy showed. Also very worried about the out patient hysteroscopy as I understand it can be very painful for post menopausal women. Just wondering if anyone on here has any experience of this as I am thinking of going for the GA option which I understand is available if asked for.

Also I have no symptoms whatsoever of anything amiss in the gyne area, just experiencing looser bowel movements for the last few months. Wondering if anyone on here had similar symptoms before a gyne diagnosis. Forewarned is for armed and I would like to prepare myself for any likely outcome. Thank you in advance.

There is colon cancer in the family and I am wondering if anyone knows if there is any link between colon issues and gyne issues

Just checking in, then I'll read back. It's been a tough week with daily radiotherapy, and what feels like a procession of professionals through the house, with two nurses at least every day giving me opiate injections, council blokes fitting various aids, and my exciting new recliner chair arriving...I'm really hoping for a quiet weekend. Mind you, between the stair lift and the recliner, home has all the excitement of the Craggy Island Fair .

Omg bof that's one of my fave Fr Ted episodes!

fizzyorange - I posted earlier in the thread about employment and support allowance as I had never heard of it, and assumed I wouldn't be entitled to anything, as I earned too much. There are two forms of ESA and I only know about the one I have started to receive. You can start claiming this one once you stop receiving statutory sick pay from your employer, and it's about £73 per week, paid fortnightly. You can backdate a claim 13 weeks, which I did and you apply online. I got paid really quickly - over £1000! I wish I'd known about it sooner, as I would have been entitled to about 9 weeks more! I only found out about it when I popped in to Macmillan at wythenshawe hospital to ask about counselling and they mentioned benefits.

They said there is also a Macmillan hardship fund, which can provide money for additional cancer-related costs (like having to buy a whole new wardrobe of clothes when you bloat up with steroids!). Your best bet would be to ask Macmillan - they were incredibly helpful and I wish I'd spoken to them earlier!

With regards to prescription costs, once you are diagnosed with cancer you are entitled to free prescriptions via a medical exemption for 5 years. I think I just asked my GP or it might have been my breast care nurse, but it was very easy to sort out. I take a massive cocktail of drugs now, so am really grateful that prescriptions are free.

I've had some good news today. I spoke to the disability service at work and they've been so helpful at sorting things out with my line manager and getting occupational health to pull their finger out and finalise the fitness to work report which details my fitness to work from home only, on a long phased return. So relieved! They have included the fact I received the government shielding letter, so I won't be going onto campus until at least March! I now officially return to work on Monday and will be back on full pay - BUT, I won't actually need to do any work until they have come out to assess my home office set up and ordered and delivered all of the equipment I will need - which could take at least 4 weeks! So, I will be paid to do nothing/very little. I can't tell you how relieved I am, as the threat of no pay and a long delay to start work was really anxiety inducing! Am hoping to get started soon, but feel reassured that I will be properly supported. I am however starting on hunting, as I really don't know how long I can cope with my line manager!

I hope everyone gets some sunshine this weekend and can enjoy it.

@Zorgothslugofdoom thank you for that information, it sounds really promising. Oh gosh, £1000! I will apply for it as soon as I can, thank you for the tip. I will ask the GP about the medical exemption as he is very helpful.

I'm so pleased you have resolved your work issues, you must be feeling so much better.

Hi just braving a second message - having a 2nd Immunotherapy on Monday - have been through a lot of chemo over the last 19 months but the immuno has really been tough side effect wise which I was not expecting - I found the start of another lockdown demoralising this week but I am battling on - not sure if anyone else feels the same? Pulled forward a dinner With friends and grabbed a trip to the beach with the dog pre-lockdown - my biggest issue currently is remaining strong for the family- sometimes it gets very tough - thanks for reading

I lurk on these threads rather than contributing, as everyone else is so much better informed than I am, and is able to keep track of things better than I can!

For everyone thinking of, or currently claiming ESA, you might like to consider signing and sharing this Government petition: petition.parliament.uk/petitions/318691

They gave Universal Credut a £20/week increase earlier this year due to Covid-19, but didn’t bother to give it to ESA claimants, who due to a higher likelihood of having to shield, arguably need it more.

i might be able to help moneywise. There's a benefit called Personal Independence payment PIP. (Im struggling to explain so will copy and paste) you can get it where your ability to carry out daily living/mobility activities is limited by your physical or mental condition.
For 2020/21 the rates are:

Standard 	Enhanced 

Daily Living component £59.70 £89.15
Mobility component £23.60 62.25

There's a how to on the Macmillan site.

Its not means tested and I think you can still apply if your working. It is based on how your daily life is impacted by illness.

If I can help anymore please shout. Would love to be able to give something back to you wonderful people.