Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

elspeth three weeks is a long wait, do you have someone who can go with you then?
The charity Ovacome has a support line, 0800 008 7054, 10 - 5 Monday to Friday, if you think it might help to talk to an expert.
Sending you very warm wishes. Please do stay on the thread and let us know how you are and what's happening.

hey all, new here though been lurking a couple of weeks. i was diagnosed with soft tissue sarcoma on friday and i have fuck all information other than it's not aggressive, it's treatable (i'm having surgery on weds followed by possibly radiotherapy) and i don't feel actively upset or worried really but just... i don't know - weird?

sarcoma is rare anyway and there are possibly 150 types of sarcoma so there's no information online really. of course since the diagnosis i've developed 100s of other symptoms and i've decided the sarcoma is actually a secondary cancer... i'm a terrible hypochondriac and also fairly medically educated because of my job, so the second i noticed a lump i self diagnosed a sarcoma and then didn't do anything about it for months, because duh of course it's not actually sarcoma, it's just my hypochondriacal imagination. but actually now it is sarcoma.

i've been messed about massively by various administrative errors so far and i'm all over the place. although strangely i've felt so much less anxious since friday when i finally found out what was going on. incidentally, the worst part was getting a letter from the marsden with my first appointment when i hadn't even had the results of any of the previous investigations. not sure why i'm posting here really, but wanted to say hello and hope you're all coping ok.

Hi all,
Apologies for cutting across some significant conversations but just a quick check in from me to say that I had my 15th and final radiotherapy treatment today.....so that's surgery, chemo and rads all done!

It's been a bumpy old road since I first found the breast lump back in March but I'm very glad to have most of the interventions done now...apart from 12 more herceptin injections, continuing into the middle of next year.

I've escaped without much in the way of side effects from the rads....no skin issues though I am still fatigued....but is that owing to the chemo? Who knows....will be glad to get my energy back I know that!
I also still have a weird taste in my mouth, though nowhere near as bad as it has been, and i still get itchy skin and bouts of dire rear from time to time. I think it's gonna be a while before the impacts of the chemo subside.
Emotionally I'm feeling calm and ok but wondering how I'm gonna get back to some kind of normal....I'm not even sure I know what that is any more. I have got some counselling sessions lined up in January before I go back to work so maybe that'll help me figure it out

A couple of nice things.....I did a 'look good, feel better' session last week and highly recommend it if you're in the least bit interested in skin care and make up. It was really enjoyable with lots of tips and a fab goody bag to take away.
I also had a lovely night away this weekend with dp in a cosy hotel.....it was very nice

Wishing everyone all the best as I shall probably be more of a lurker than a contributor now. Thanks to everyone who's held my hand and put up with my ramblings over the months....

Hi Daisy and welcome to the thread. I think your reaction to the news is fairly typical, it takes a while to process and most people seem to feel better once they have a concrete diagnosis and a treatment plan.I had never heard of Sarcoma until today and now it's cropped up twice. I read an article in today's daily telegraph about it. There is a charity called Sarcoma UK apparently and they have a report due to be published tomorrow. It also mentions that there is an oncologist at the Marsden who is a world leading expert on sarcoma.

WTF nice to hear some good news. I feel I've been with you for much of your treatment, I came onto the thread in July. All the very best

Hi hope it's ok to post this. I don't have cancer but I thought DaisyBD might find it useful to hear about my husband's sarcoma. He had a large lump appear on his lower leg 2 years ago, no one at local hospital knew what it was. Eventually got referred via the London Sarcoma Service to the Royal Stanmore Hospital who confirmed it was a pleomorphic spindle cell sarcoma. The sarcoma was removed at Stanmore, then due to the size of the excision he was transferred to the Royal Free for plastic surgery on his leg. Then after a few months when it had healed he had radiotherapy at UCL. He now has regular check ups at UCL and regular chest X-rays as apparently it is most likely to appear as a secondary in the lungs. So far he has been getting on ok. There is a soft tissue sarcoma forum on the Macmillan online community that might be useful. Best wishes to everyone.

@DaisyBD welcome, I am sorry to hear about your diagnosis. Treatable and non-aggressive is good though! You will feel better when you have more information, and hopefully all future news will be good. Do stay on the thread and keep updating.
@WTF congrats on finishing rads, hope all the side effects clear up soon; I still have a bad taste in my mouth too, nearly four weeks after last chemo.
I've got a horrible cold and am feeling sorry for myself. CT scan tomorrow, oncologist a week later, pretty confident there will be no bad news.

By the way - might someone consider starting a new thread when this one is full?

WTF. Congratulations on finishing the rads. The tiredness from that wears off reasonably quickly. The only side effects I have that they are putting down to the Herceptin is the ever runny nose.

Daisy I think that weird,not quite there feeling, after diagnosis is very common. As many people here will tell you, waiting for a clear treatment plan is one of the worst bits and once you know exactly what will happen it does get a bit easier to get your head around

Elspeth facing a longish wait for answers is hard to cope with partly because, if you are in any way like me, your imagination feels in the gaps and usually not in a good way. I would second Bridget's suggestion to have someone with you at the appointment if at all possible. I went on on my own and then didn't quite take in all the details of the treatment plan and had to ring the cancer nurse the next day!

Bridget I am sorry to hear about your cold. The last thing you need but at this time of year and with everything else being thrown at you probably inevitable. I hope it passes quickly.

I am in LOndon with my DH for an event for a group of his ex colleagues that we travel with sometimes. Not really what I am in the mood for right now but they are all lovely people and I am sure I will get into the spirit of things. Seem to be struggling a lot with anxiety at the moment, mostly about my DD and her situation but I think also worrying about whether they will stop the Herceptin. I have tried to find out about counselling but the Macmillan site wasn't much help. Has anyone else accessed specialist cancer related counselling and if so how did you find it?

@meercat23 I hope you manage to get some enjoyment from your time in London. How is your DD? Re counselling, I remember Snows paid a lot for a session - of course she's in Australia - and didn't feel it was much use. But she must have been unlucky. Have you made enquiries about it at the hospital?
Thanks for get well wishes. Where are the chocolate biscuits when you need them?

I'm really struggling with my bowels and hoping for advice from those who have been through chemo. Lurching between constipation and diarrhoea.
I normal suffer from some constipation caused as a side effect of taking a drug. I've managed to control it for years with diet and daily lactulose. Stopped using the lactulose a while ago as it started disagreeing with me.
After treatment I get constipated then after a few days of laxatives I end up with diarrhoea and appalling wind . I was given movicol and senna by the chemo ward and I have imodium in the cupboard.

I haven't taken any laxatives since Sunday (though I have been drinking my usual prune juice) and I have dire rear today. What I'm wondering is whether this pattern is actually a side effect or is it just that I haven't found the right balance of laxatives?

Skap in my experience - and others', as evidenced by this thread - it's almost impossible to avoid constipation, diarrhoea or both. I refused to take Movicol and just took one or two senna tablets as needed, I still had a couple of ghastly diarrhoea incidents! I don't need the senna now, but have a couple of prunes with my cereal most mornings.
Wind was truly dreadful but seems to have calmed down now!
So, sorry to say, I think you might have to resign yourself to having worsened bowel issues until you're done with chemo, but I hope afterwards things will settle down.

By the way, I wore substantial panty liners day and night for damage limitation.

Thanks Bridget. Yes, I need damage limitation...
.

thank you all. i feel both worse and better today - loads of my colleagues have been really supportive and i feel so positive about it all, but also really weepy. i'm just a bit out of control really. today is my last day of work either for a few weeks or a few months, i don't know yet, it's been really busy and stressful but also good, and now i'm ready to let go of it all.

my surgery is in the morning and i guess i'll have more information afterwards. my sarcoma is near my spine, the type i have is much more usually found on limbs, and my surgeon is concerned that there might not be space underneath it to get a good margin as it's so near my sacrum, right on top of it really. so they might either have to take a bit of bone too (even though the sarcoma is in the connective tissue and muscle not bone) or more likely do radiotherapy afterwards. thankyou @jennifercat for your story, that sounds really positive but i bet it was scary at the time. and i'll look up the telegraph article, thanks @Skap

Hi all, have had a brief read of the recent posts to catch up - thought I'd try to forget about my scan for a bit (didn't work) so I avoided mumsnet for a bit.
I probably shouldn't have found the bowels chat funny, but as I have IBS it all seemed very familiar. Husband says I could power half of Scotland with my farting...😳, however I hope you get your meds balanced skap.
daisy good luck for tomorrow, I will be thinking of you.
fudgesmummy how are you doing??
I am still waiting for my ct results - I did phone the consultants secretary yesterday but there's nothing back. Trying not to be too optimistic as my gp said that unless the radiographer spots something that needs action immediately, the scans are just "put in a pile" to be worked through. It's been 3 weeks now and I'm not sure I can do another week! It's always niggling at the back of my mind no matter how busy I am at work etc.
I have no patience.

@Wtf99, all the best. Hope the counselling sessions are beneficial to you.

@Bloodybridget, good luck for your scan tomorrow and the oncology appt next week. Rotten time to have a cold.

@meercat23, my GP suggested I seek counselling from mcmillian. I'm going to give the helpline a call and see if they have any information. Anxiety sucks, I've definitely got worse since the surgical menopause.
Hope you are settling into the London event and have a bit of a good time.

@Skap getting a balance between dire rear and constipation is almost impossible. I'm on prunes and lactolose but sometimes they work too well. If I reduce at all I end up needing the sennakot!

@redspook, I think you have scans and follow up around now. Wishing you all the best.

Peaceful evening to you all. Thinking of everyone undergoing treatments or awaiting results.

Oh fuck....just lost a huge post. The essence was....

1. Chemo is vile but you will get through it and your bowels will probably play up for the duration
2. Post treatment has its own challenges and I'm pinning a lot on counselling to sort that out
3. We all deserve a fucking medal

There's probably more but I can't remember now....except i looked at my late September posts and blimey it was hard then.....
Night all

@DaisyBD thinking of you this morning, you're probably up by now (on the way to hospital?). I hope the surgery is as uncomplicated as possible and goes very well.
@TenaKween fortunately DP and I do laugh about terrible farts, although I have had to apologise a lot too! That is an awfully long time to wait for results, of course you are fretting. But hopefully no news is good news?
@WTF99 isn't it infuriating when you lose a long post? Yes compared to a few weeks ago, you're a new woman, thank goodness!
I'm still sneezing and coughing so much, I wonder if they'll be able to do the scan today - not sure I'm capable of keeping still and breathing they way you have to. I'll turn up anyway. Feel like Typhoid Mary.

Thanks bloodybridget and fingers crossed for your scan. I had a terrible cold when I had mine, and was v worried that id pee myself during it (hence username). Thank god it was only 5 mins.

Hello, first post here. I've just had cycle 4/6 of chemo for breast cancer. The prognosis looks positive but this last chemo was targeted therapy and the side effects were a lot worse than the 1st three cycles (joint pain etc)

I'm in a good position compared to many people but I think I'm feeling a bit fed up as it still seems a long way to go.

I have a 1 year-old and although we have had lots of help from friends I'm finding it hard juggling a toddler and having cancer as they both feel like full time jobs. It's also peak germ season and it's really hard to keep healthy (caught croup on 1st chemo cycle which turned into neutropenic sepsis).

Just feeling a bit flat just now. Still have surgery and radiotherapy to go after chemo but could do with some positive vibes!

Sorry, I’m new and have just jumped on this as the first thread I’ve found on cancer.... I need advice and the drs aren’t helping so I’m reaching out to all of you...

My MIL had her first chemo last Thursday. She hasn’t been able to get out of bed since. She’s vomiting, nauseous, grey skinned and losing even more weight because she is barely eating. On Monday she ate 1 biscuit and 1 cracker. Yesterday she managed 1 piece of dry toast. Complan and Fortisip come straight back up, as does water. She’s literally fading away and when we rang the hospital oncology dept they said “nothing we can do, it’s the side effects of chemo”

She has been diagnosed with stage 4 ovarian cancer with metastasises (sp?) in diaphragm and liver.

Mumtomaxwell That response from the hospital doesn't sound very helpful at all. It is true that chemo can leave you with dreadful side effects but I found that the chemo unit was very proactive in checking what side effects I had and making sure I had what I needed to cope with them. They should be able to give your MiL medication to deal with the nausea and sickness and to advise what she could try to eat and drink. When I was at that stage I found that sipping ginger tea helped keep me hydrated and if I took it in very small amounts at a time I could cope with a very light broth.

I hope the side effects start to subside. It must be very worrying to see her like this. If the hospital is unhelpful you might get better support by ringing Macmillan.

Defaultuser No wonder you are feeling flat. Coping with a little one IS a full time job and coping with cancer treatment DOES take all of your energy too.

The most positive thing I can tell you is that you are almost through the chemo and in my experience the side effects are worse for that than for either radiotherapy (depending on how many sessions you will be having) or surgery.

It must be really hard with a little one to look after but take whatever support you are offered and be as good to yourself as you can be.

I have found this thread an amazing support during the tough times. The lovely people here know exactly what you are going through and how hard it is and can offer practical advice and moral support all based on experience.

Thank you for your reply meercat23. I was feeling pretty positive until I got into the grim reality of the treatment and side effects. It's lovely to talk to people who understand.

Been absent for a few days as have been getting over side effects of chemo number 1 - just about over them now, just in time for round 2 on Friday. Stressing out more about having the port fitted tomorrow! Absolutely terrified about having it, even though I know it's for the best and will save my veins - it's just the idea of having something implanted for such a long time! Need to put my big girl pants on! Does anyone have any advice?

Hugs and best wishes to everyone.