We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Hi everyone,

The school run was fine (well both am & pm were) thank goodness!
I have been awake since 4am though & went to hospital for a dressing change, then actually met a couple of friends for a cuppa afterwards. It's the 1st time I have been properly out (school runs aside) since chemo 10 days ago. Am shattered now!

I rang the chemo unit about my nosebleeds & the advice is to put a tampon up your nose to stem the flow! Also potentially if another long one, I may need to go to the walk in centre or a&e to check I am not anaemic if I feel faint afterwards. They are also going to give me stronger co-codamol for the bone & joint pain next time too. The nurse I spoke to is absolutely lovely & I ended up feeling quite tearful as she remembered me and asked about so much stuff & really sounds to care. It doesn't take much to set me off these days!

The sparkly slippers sound fab Lesley how were the shoes?

Glad you didn't need a lie down after tackling the stairs purple like you say, it is the small things... That and unicorn slippers obviously!

ranout the slipper socks are a good idea for chemo, I wore a scarfy wrap type thing when I cold capped which made me feel cosy as I got quite chilly. Good luck for tomorrow's chemo.

Waves & hello to everyone. The kids are having tea and I shall be very prompt with reading, bath & bedtime tonight as my eyes are closing already!

ranout excellent plan. I always take slipper socks to chemo too. It's good to be able to get cosy :)

purple excellent on the stair climbing. I don't mean to be bossy but please please do get checked out tomorrow. These things can turn nasty so quickly when your immune system is down don't worry about being that patient. I think they must have some sort of flag next to my name because as soon as I say who I am they just book me in right away.

I will get the scan results on Wednesday, but unless it's radically different from what they're expecting I'll be having something called Lonsurf. It's a tablet one. Five days then two day break, then same again followed by two weeks off. I'm really going to miss the chemo unit. I've had nearly forty cycles so it's really become like a second home

noodles I'm glad you made it through the school runs without issue and managed to get out with your friends too :) hopefully you won't have any more major nosebleeds!

The new shoes are fab, thank you me and my dad ventured out to the supermarket. We even had lunch in the cafe there. It was nice to feel normal and not be wearing my slobbing about clothes :)

Hey lacies just a quick check on tonight. I signed up to slimming world today on the 12 week referral that the breast nurse got me. The sw leader thinks I should be able to shed 3 stone in that time.

Plus I managed to take my middle one to school twice now since she went back. Apparently she has told her class that I am a pirate due to wearing a head scarf and the youngest starts preschool tomorrow so finally a break.

Another busy week this week with two visits to the chemo unit one for check up and one for hopefully to have round 2 of chemo. The appointments are still coming through and ate averaging out at a couple a week. I really need a break plus it's costing a fortune as I need a taxi each way as I'm so exhausted all the time but apparently I can try to claim these costs back but I need receipts from the taxi company.

@Pandoraslastchance I should be asleep but I just remembered something. During treatment, my then 1yo had some funded nursery care due to our circumstances. It was funded by the children's centre via a referral from GP to HV. I think a lot is dependent on local funding but just wanted you to know that this sort of help could be a possibility

Good luck with round 2 of chemo

Macmillan can sometimes provide grants too if needed, or local charities. Sorry you're struggling so much pandora. Being a cancer patient is rather a full time job with all the appointments, especially in the early days! Hopefully it'll calm down a bit soon. And good luck with the Slimming World :)

pandora is it possible to look into the possibility of patient transport too for the hospital appointments & chemo?
Also look at the HMRC website as there may be childcare funding there which could be claimed. I think they do 30 hours free for 3 year olds now, but in some cases they extend for younger children.

I love the pirate comment from your daughter. They really do adjust so well to change don't they?! Good news regarding preschool too for your youngest & that you can get some time to yourself now.

Good luck with Slimming World & your appointments this week

@Pandoraslastchance good to hear from you. Definitely ask about your taxing being paid for. Where I am they pay for them and will organise them or other transport for you.
As others have mentioned have a word about your youngest and payment for pre school. Is it private or a charity? I only ask I I helped out a lot with my DS's and we helped fund a number of places where parents would have struggled and I'm sure we would have helped out under your circumstances. Good luck with your appointments and yes, it does seem like a full time job at the moment.

Just checking in to say I should have listened to you Leslie.
I woke up this morning and blood was just pouring out of me, phoned the chemo unit who told me to go straight to A&E

The chemo has caused necrosis, basically the tumours have started rotting and dislodging themselves. Although technically it's a good thing there's still some left in my cervix so I could start bleeding again at any time

They've packed me with silver nitrate and padding to stop the bleeding and I think I'll be here for at least a couple of days

Just waiting to see if I need a blood transfusion

Oh my goodness Purple that must have so scary! Don't fear blood transfusions though. They are marvellous things - I felt (comparatively) wonderful after mine and it's refreshing knowing that drip in the arm is actually pumping good stuff in instead of poison.

Leslie are you getting used to the new mattress? When do you start the Lonsurf? Hopefully that will be less onerous but effective. I know what you mean about missing the chemo ward. We spend so many hours there and get to know the nurses so well. Maybe you should just pop in every week or so with cake anyway!

Pandora good luck with SW. Don't put too much pressure on yourself though.

waving to everyone

Bloody hell purple! You poor thing. That must have been terrifying. The silver lining is that the nasty fuckers are dying off. But they needn't have done it in such a dramatic way. I hope that you are comfortable and have a bed somewhere quiet. Fingers crossed that's the end of the bleeding. Have you had a transfusion before? I've always felt much better after mine so hopefully if you need one it'll give you a bit of a boost.

Do you have anything to entertain you? How's the crochet going?!

Sending you a huge hug

purple how bloomin scary and I hope that you're comfortable whilst all this is happening. Like Leslie said least there's a silver lining to it.

Cross-posted with you TQ. Good morning!

I've got thank you cards for the nurses and aromatherapy lady so I'm going to take those in with some cakes. Probably brownies as they were very popular last time.

In theory I think I'm starting the Lonsurf on Thursday as I'm seeing the oncologist tomorrow. I have quite a scratchy throat though and have been doing the whole coughing until I throw up thing again, so I'm not sure if that's a virus or what. Might need to wait until next week.

I couldn't sleep in the night as my annoying groin pain/adhesions started up again. The mattress is comfortable though. I've ordered a new full length body pillow as my old one has worn out. I highly recommend it for anyone with chemo aches and pains. I prop myself into all sorts of odd positions. And I've also ordered an ice cream maker I've always wanted one so I decided to go for it! I should probably stop internet shopping at night time before I end up with anything too outrageous

How are you TwittleBee? I've been thinking about you

As bless you leslie I'm okay, just had my CT scans so waiting to feel better before attempting trip home. The air has set off the pain in my tummy again something horrid and now my chest feels tight too. Feel like a right whimp.

You should have got the ice cream maker sooner to help with the hot weather over summer btw! You going to try making all sorts of combinations? Sorry to read about the pain being shit for you.

Bloody hell purple that must have been very frightening. Like Lesley says at least they are dying off - but does it have to be in such an am dram manner too?!
All I keep thinking is thank god it didn't happen when you were walking round Tesco's too!, sorry I know that is not relevant! Hopefully when these all go & if you do have a transfusion you will feel much better.

I hope you get a nice quiet bed somewhere so you can rest up as much as possible whilst you are in hospital.

Pandora is it worth trying Universal Credit?

Leslie recipes and feedback will be required please!

TwittleBee do you know when you'll get the scan results? Fingers very firmly crossed for you . You're not a wimp. That trapped air feeling is really unpleasant. I hope it calms down soon

And yes it's rather silly timing isn't it! better late than never though. I'll be experimenting lots and I shall report back.

By the way TQ how are your toes now? I'm going to the podiatrist for my post-op check up on mine today :)

Well they're still disgusting Leslie but minimal pain. Thanks for asking . The other big toe has gone nasty but it's stopped weeping (TMI). Since they don't hurt I'm ignoring them - I can't seem to stop my head-in-the-sand strategy.... How is your toe? All good there I hope and a full recovery?

Apparently my PIP claim was refused, though I didn't know this until a nice woman rang and told me, and then gave me advice on how to fill in the form again. I got really confused again though because she kept going on about my DS1500 going elsewhere and seemed to imply that my next CT scan would determine how the claim would be received.

In hindsight I think she was giving me secret messages . She told me that I'd put 'sometimes' in response to things like 'managing everyday stuff' and apparently they they don't like variables so the correct answer is 'yes'. I feel bad now because I wasn't as patient with her as I should have been...

So I've actually already had a sneak peak at my CT scan results due to knowing someone who works in the department and it's good news for me! It isn't cancer causing me issues. It's a partly redundant colon and oestitis pubis so guess i need to speak to my Dr to see what that means going foward.

I hope you don't all mind but I shall certainly be popping back to see how you all are and if Leslie's ice cream making becomes a success

Great news twittle not sure what a redundant colon means for you! Hopefully it will not be too onerous & fantastic it is not cancer

Lesley my brother makes a fab vanilla & Choc chip semi frodo thing, he did it one Christmas when we visited. It was like a posh vienetta (I know that prob isn't selling it, but it was lush) I think the recipe is from a big red cookbook called silver spoon, I will have to dig it out as I am sure I wrote it down (but have never managed to have the freezer space to make it!)

TQ thank goodness for people giving subliminal messages for the forms. It is a shame given the number of people who have been assisting you that no one gave you a hint when completing it. Hopefully it is something they can backdate too...

FFS TQ what a complete pain. Though I'm glad the woman gave you some hints. Did you fill out the form yourself? Apparently that counts against you because being able to fill in a form obviously means you're in tip top health so you could hopefully get a Macmillan advisor to do it for you next time. I thought if you had the DS1500 it was guaranteed to be approved

I'm glad your toes don't hurt. That's something anyway. Mine is fully healed. No more mankiness I'd highly recommend getting them looked at if they continue to be troublesome.

TwittleBee that is such utterly splendid news well, not that you've got bowel issues obviously, but that it's not cancer! I'm so relieved for you. Your symptoms were quite worrying and obviously the medical folk were pretty convinced it was cancer. I hope that you will get treatment and feel much better soon :) that has truly put a big smile on my face.

noodles that sounds delicious. I like Vienetta. In fact I had some of the mint one for breakfast as my throat was really sore! I have a Ben and Jerry's recipe book that I bought years ago and have never used so I'm looking forward to trying some of those.

I had to go to the chemo unit for my blood test this afternoon as the district nurses forgot me this morning. I felt a bit tearful to be honest that I won't be going back there for treatment

Just popping in to say hello. Well I've been lurking so been following how you are all getting on but nothing cancer related really going on here so not posted recently.
Purple sorry to hear you are in hospital, that sounds really scary - a bit of a dramatic way to find out chemo working! Hope the the transfusion makes you feel better if you have one - I felt great after mine.
TwittleBee fabulous news! Good luck with the treatment for your bowel problems but very glad it's not cancer.
Leslie the ice-cream maker sounds like a great idea. Can't wait to hear what you make.
I saw my surgeon and the bad/good news is I do have enough colon left to require monitoring by colonoscopy - expecting first appointment in October. At least they knock you out for it and I suppose it will be reassuring to be checked up on. Can't say I'm looking forward to the experience though!

Hello, I've also been awol as had nothing to post but have been checking up on you all.
Dear God purple that sounds awful. But like everyone says good that the rumours are falling off you.

Had my scan results and no tumours have been found. I am so relieved! Will he having scans every 4 months and although a colonoscopy hasn't been mentioned I'm sure I'll be having those as well.

Lump is a hernia and will need removing in the next few months. Not too bothered about that to be honest. Could have been a lot worse.

Waving to everyone else and hope you're all as ok as possible.

Rumours??? Tumours!

Leslie So jealous of the ice cream maker! One of my chemo drugs makes me so sensitive to cold that I don’t have any and I miss it so much. Vienetta for breakfast sounds bloody brilliant! Did you have Oxyplatin with all the cold nonsense before? It drives me mad. Adhesions sound horrible, and the coughing. I’m not enjoying lung symptoms one little bit. I think having had a year of liver mets which didn’t affect my liver function so were scary but didn’t make me feel too bad, now having all this coughing and shortness of breath is not enjoyable in the least.

Nosebleed sounds extreme and horrible. So glad they’ve figured out what it is purple I’ve never had a blood transfusion but if it helps then it’s what it’s there for. You’ve been through a whole load worse.

I’ve been gradually telling people that I’m not working towards a cure anymore. Well not everyone but the people who need to know. It’s exhausting when you have to reassure everyone but I know when I’m being positive other people will be too. Sleeping has got loads worse which I think is prob to be expected. Am dreading my next clinic appointment but hopefully they’re just going to tell me it’s more of the same for a bit. Ugh.

I find it really hard now when people say things like “I hope you are feel better soon” and “another treatment out the way”. I know what they mean but I’m not counting down to anything anymore, and it’s hard to know what to reply with. Smile and nod I guess and I am also pretty brilliant at changing the subject.