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

I forgot we had a resident nurse on board now Pandora good idea with the dog poo bags, I have loads of them.

I haven't been given a store to order from but I did get a Fittleworth pack before I left so I'll probably just stick with them. The hospital I had the operation at is a different one to where my stoma nurse is from, I think they said she'll be out in 10 days so I'll see what she says. Hope you're enjoying your holiday Leslie

I totally relate to nothing fitting Mike. I can't remember the last time I managed to get a pair of jeans on. Hope you have lovely time away and the weather holds up

Hi lacies,

Hope everyone is doing as well as they can be today.

purple those bags are bound to be fiddly to begin with, my Dad has one for urine & he got to grips with it fairly quickly I think. Good advice from Lesley re products. Dad orders from the same place.
Glad you are home, however gingerly you are having to lie down. I hope you are on top of the pain relief.

Lesley the waves sound glorious. Enjoy :) the wet suit sounds a good idea for the sea swimming too. I used to love going to a place in Devon called Beer for swimming. It is a pebbly beach at a little fishing village, but has quite a steep gradient to get into the sea, so not too much oo-Arrring!

ranout I hope you are enjoying your weekend away. The seafood meal sounds like the perfect treat before starting chemo. The fasting sounds interesting, although I am mainly suffering with nausea & tiredness. I am only eating little & when I feel like it. Due to tablets needed before and with food, I have had to keep eating regularly, but much less intake mainly as I have been nauseous, not because I am trying to fast as such. I think my nausea meds are working better for me this cycle, but I have slept most of the morning after getting up for some brekky/tablets/water. I thought the 3rd cycle would be the worst after doing 3 x fortnightly lots due to the cumulative effect, but that doesn't seem to be the case. My next lot is docetaxel & herceptin of which I have 4 X 3 weekly rounds of.

I hope you hear from hospital 2mo with a plan to take forwards planned I cannot scroll back or will lose what I have typed, but the posters info about contacting the marsden or other specialist centre which may bring up new trials/treatment plans etc that you can try could really be beneficial. It is such a lot for you to take in in such a short space of time. Info overload. X

mrswhip at least if the only treatment for yours is surgery, they will be keeping a very close eye on you for the foreseeable. Especially if there is any confusion regarding the amount of healthy margin they needed to remove.

I hope everyone is having a good restful Sunday

Thanks Noodles, the oramorph and paracetamol seems to be keeping on top of it as long as I remember to take it regularly.

It's quiet on here today, I'm hoping everyone's too busy enjoying their weekend/holidays to post.

I'm going to Blackpool tomorrow although there is a wheelchair in the car just incase I get too lazy tired. I definitely won't be attempting any of the rides though

Good morning and happy Monday!

ranout enjoy your last day before chemo :) I hope you had a nice meal last night. I'm vegetarian so a seafood restaurant is the stuff of nightmares for me!

Eagle the fasting sounds very interesting. Thank you for sharing so much information. I'm not sure it would really work for me with my other issues and greediness

Miles have a wonderful holiday I'm feeling decidedly lardy myself so we can be lard balls together. Maybe it will just melt off us during our holidays

noodles that sounds lovely. Devon is beautiful. How are you feeling?

purple I now wear maternity jeans as my stoma is at waistband height, so the stretchy panel prevents it getting squashed. I'm glad your pain is under control. Have a great day in Blackpool

I'm just deciding if I have enough energy to go swimming this morning. I should make the effort really as obviously I can't do it at home.

Unfortunately I'm sitting at the hospital trying to pull myself together to drive to work... found a lump on the other side last weekend and they took a biopsy this morning. Other boob is still in tatters from the radiotherapy, don't want to do it all again already... would like it all to piss off now! Sorry having a real grey cloud moment

Hi Knicker My grandad used to live in Walmer, Deal, and there used to be an ice cream parlour on the front. I remember my father taking me there for my first ever knickerbockerglory... I was thrilled!

Sorry to hear your news - what a grim start to the week. Do they know if it's definitely cancerous? Can you just say 'sod work' and go home? We all feel that cloud at times.

Have some .

I'm not sure I've ever had a knickerbocker glory. I do love ice cream though.

Sending you a big hug KnickerBocker what an absolutely rubbish start to the week. When will you get the biopsy results? I'm not surprised you're feeling down

I gave myself a kick up the bottom and went for a swim in the sea. It was lovely. And then had a (veggie) fry up. Yum. My breathing seems to be better today too :) I still have to remind myself I have cancer because it just seems so silly. I don't feel sick.

planned still thinking of you

Leslie If you're by the seaside it's the law to have a KBG.
Glad you managed a swim. I'm determined to get one in before autumn.

Planned thinking of you too.

Today I have an emergency appt at the dentist in 45 mins - lost a lot of a tooth yesterday, and printing of loads of stuff for my universal credit meeting tomorrow. Such fun. Though I am going to see Mama Mia 2 again if I get out of the dentist in time.

Purple Hope you're enjoying Blackpool!

Good luck at the dentist TQ - is that chemo damage? Annoying. I hope it doesn't hurt. And I hope you get out in time to watch Mamma Mia 2. I have had several gelatos from the nearby shop so hopefully that makes up for lack of KBGs

I'm so sorry to barge in here. I haven't had a diagnosis yet but I'm terrified.

For the last 5 months I've had abdominal pains. I've had alternating constipation and diarrhea almost constantly. I've got lower back pain and for the last 2-3 weeks I can feel as though something is pushing in the top of my vagina. The pain now radiates down my inner thighs too.

Most days are full of pain. I had an abdominal ultrasound 4 months ago which showed a 5cm septated ovarian cyst and my CA125 was 28. At the same time, I had a smear test which was clear.

I had another ultrasound on Friday with the cyst still there but the sonographer wouldn't tell me anything else.

The way the pain has spread so much makes me sure it's cancer. I'm terrified for my ultrasound results but my GP is also reluctant to look into any of this further, he is confident it is all the cyst. I don't think it is, when I was being scanned, the area above the cyst was nowhere near the pain. I asked for a colonoscopy because of my symptoms but he said no and had requested a blood test instead.

I have three children aged 8, 3 and 6 months and this is more than I can bear right now 😞

Hi buzz sorry you're scared. I think you definitely need a colonoscopy if you're scared and in pain. I had a clear ultrasound and as it turned out I had a tumour on my bowel which didn't show on US.
hopefully it's just a cyst and nothing to worry about but you're right in asking for more tests.
Good luck and hope you're not here to stay.

My 8 year old has special needs and needs me. I can't not be around for him 😞 I am so scared

Hello Buzz but sorry you find yourself here

I don't know anything about ovarian cancer, but to quote TQ's post earlier in the thread Anything below 35ish is completely normal. so your CA125 result is fine. Hopefully that means your cyst really is just a cyst.

Have you been checked for a prolapse? The bit about the pressure in your vagina immediately made me think of that, especially as you've had three children.

A blood test is often the first step. Do you know what they are testing? Depending on those results they might refer for a colonoscopy if they think it is necessary.

Do you have any other symptoms? I've attached a little infographic of bowel cancer symptoms (I assume that's what you suspect as you've requested a colonoscopy.) But there's every chance that the change in bowel habits is caused by something relatively innocent, like IBS.

Just because the pain is bad and spreading doesn't mean it is cancer. It can be surprising how painful quite innocent conditions can be. (For example, I have adhesions from my surgery and I was admitted to hospital because they were utterly convinced I had a new tumour due to the level of pain, but it really was just some adhesions.)

I hope you get some reassurance soon

I feel like the ovarian cyst has been a bit of red herring to be honest as like you say, my CA level was within normal range. What concerns me is that the pains in my abdomen don't seem to have any correlation to what I eat or when. I assume this rules out IBS?

I'm hoping to call my GP tomorrow to say basically I'd like a referral to have a colonoscopy or if she wont, a referral to a GP who will.

Hello all. Hope everyone had a comfortable weekend and good luck for appointments this week.

Got a delay on starting my last 5 radiotherapy boost treatments as they hadn't made the part that fits over the end of the machine for me. Think it's a lead cover kind of thing.

They didn't find this out until I had got changed into my robe for the treatment (and had sat through a delay).

I will have to go in on Saturday now.

Thanks for the hugs, and glad my username has invoked warm fuzzy memories! Week to 10 days for the results, i am praying it's just a cyst and my boobs are on their last warning now! I've come home early and I'm currently curled up with s cup of tea, determined not to dwell on it for now. Hope you've all enjoyed some sunshine today 😊

Ooh good thinking Leslie! Next do some nice maternity jeans

Knicker hopefully it's just lymph nodes playing up as a side effect from the radio you've already has

Buzz the first thing I thought was a prolapse too, although cysts do cause all sorts of issues so hopefully that's all it is

I'm still in Blackpool but heading home soon. I'm absolutely shattered and I've got the stoma nurse coming out tomorrow

Purple Blackpool is my home town :) I live on the other side of the country now though. Notoranni's on Waterloo Road do the best ice cream in the entire world.

Breast clinic in the morning. I'm trying not to drown my anxiety in vodka

Bravo good luck tomorrow. I hope you manage to sleep tonight without too much vodka!

purple I hope you've had a fun day. Good luck with the nurse tomorrow :)

Knicker fingers crossed for you too

chase that's such a pain

Buzz IBS covers such a vast range of symptoms so it's hard to know really. If it's only the pain and change of bowel habits then I don't think you meet the referral criteria for a colonoscopy. Have you had a stool test? That might be a better first step - they can test for faecal occult blood and inflammatory markers. Then if those are positive that would usually lead to a referral.

Waving to all, from one of the Oldies. Seven and a half years post DX with breast cancer.
Not often on MN now, but mindful and thankful of the splendid support that so many offer here.
And continuing to read the latest research papers, in the hope that more and more people DXd with cancer will keep being alive and thriving.

Hi,

Sorry a bit quiet as iPad was out of charge when I was awake! I seem to have managed to swerve a lot of nausea this round, but am on new sickness meds that cause drowsiness, so have slept a fair bit more than usual. I feel a bit fluey, but not as headachey which I am putting down to the lack of cold cap. I feel so much better this round as well, I think shaving my head has just given me a new lease of life instead of feeling down about losing my hair, it doesn't bother me any more at all.

I hope you had a good day in Blackpool purple did you manage a donkey ride if not a fairground one?! I bet you are exhausted, just lying about seems to be wearing me out at the mo!

Lesley well done for going for a dip earlier, did you brave the sea again later on?

TQ the tooth & the forms sound awful. Not sure which I would rather endure if I could pick one. I hope you managed to have time for Mamma mia2.

Buzz good luck with the GP 2mo, I hope you get some answers quickly to stop you fretting. Likewise knicker I hope it is just your nodes playing up as purple suggested. Just what you need after having treatment on your other breast.

Good luck 2mo bravo and ranout how was the PICC line fitting?

Thinking of you planned any updates for a treatment plan at all yet?

How are your chemo side effects pandora? I found it hit me days 3/4/5 more. I hope you are bearing up ok.

I have a look good, feel better course to go to tomorrow (if I can stay awake for it that is!)

I hope everyone has as good a day as possible tomorrow. Night

Waving to amber :)

I'm glad you're feeling a bit better noodle although the drowsiness is a bit of a pain - how long do you have to take those tablets for? I know what you mean about the hair. Mine has got really thin and straggly. I'm a bit sad as it was nearly long enough to be cut into a very short bob. But now tbh I'm half hoping it just properly falls out again as it looks so pathetic

Enjoy LGFB noodles :)

I have to ask... who is Leslie Knope??

I'm keeping everything crossed that it goes well for you in the morning Bravo or however many hours it is from now as I'm wide awake as usual

TQ hope you managed to get your tooth sorted and good luck with the universal credit meeting. I'm still that you've had to go to one. Let us know how you get on

Ooh Noodles those Look Good Feel Better workshops are fab! You get loads of freebies. No unfortunately I didn't go on the donkeys. I love donkeys which I why I wouldn't put them though the pain of trying to carry me around

That's what I wondered Knicker, I just assumed it was her real name for a while