What can pals to do to help?

hi

in my experience the diarrhoea started within a few hours of the chemo, I got home around 9pm and was up around 3 am and again at 4 and 5 ... nobody warned me to expect this and I had nothing to hand other than some co-codamol which I'd been given for a stiff neck that had developed in the delay between diagnosis and surgery. Codeine causes constipation and from then on throughout my whole treatment I was juggling constipation and diarrhoea,  which is exhausting in itself. I was told to expect to gain weight as the steroids make you hungry but then one of the nurses said weight gain wasn't inevitable if you didn't give in to the carb cravings and my weight didn't actually vary that much, it was in the year after chemo I was feeling sorry for myself and comfort ate croissants and pain-au-raisin  

I was also knackered all the time, I would say I slept for 6 months but I know I did get  up and go to work.

I tried calling the unit a couple of times but it was a waste of time, they just said go to A&E and our A&E is so horrid I would inevitably take a couple of paracetamol and see if things settled, I had invested in a digital thermometer and my daughter nagged me to keep taking my temp. it was a bit high but I removed the extra fleece and the bobble had and the ugg boots and it dropped sufficiently for me to relax. 

It sounds as though they've made a judgement call on the weight loss aspect and you do have to be fit and well to withstand the toxic chemo drugs. And yes I realise the irony of being 'fit and well' when you've just been told you had cancer.

HAD is the operative word here.  You had cancer. They surgically removed it and now it's gone. It's a hell of a head warp to go from the scary 'cancer' and feeling life is over to "it's fine you're okay now" ... and for most of us we're really not okay with it. 

I really didn't want chemo and tried to argue that since the cancer had been removed surely there was no need for chemo but they said it was to make doubly sure no cancer cells had escaped.  This is a highly contentious issue and my posts often get 'edited' by the admin team for spelling out the risks. I was told I'd be a fool not to have chemo as my type of cancer was quite likely to return BUT that even with maximum dose 4x EC and 4 x T and 18 x Herceptin there was still no 100% guarantee it wouldn't come back. 

I felt like I was damned if I did and damned if I didn't .  In fact one of the oncologists did point out that although the long term side effects were significant, including the increased risk of leukaemia, which my mother died of, was irrelevant if I didn't have it I wouldn't live long enough to suffer them. His motivational technique was blunt but effective, along with the nicer oncologist who threatened to lock me in the room.

Truth is that chemo is dangerous, the overall risk is 10%, that's a 10% risk of death. In breast it tends to be lower because we're good at following instructions to avoid infections, we report adverse reactions, as you have done, and we take our meds as instructed. It's still around 3%. Your team are making sure you're not in that 3%. You are still entitled to a second opinion and PALS can help you with that. 

Cells escaping is a real issue and although surgeons take great care to avoid it they don't operate under the level of magnification to allow viewing at cell level, this is why they sometimes don't achieve clear margins. There are tests to detect circulating tumour cells but they are fairly new and pretty expensive and although we are generally praise the NHS the pot of cash has to be divided across everyone and every illness.

The boys in the city were getting quite excited by the financial prospects of companies investing in the new technologies. 

We know that we 'over treat' cancer patients because we don't actually know who will benefit from chemo and who won't and until you give chemo you don't know who will react badly, the crash teams had to attend several times whilst I was undergoing treatment. There is no 'patch test' for chemo and they can't or don't test it on your tumour cells in the lab.

Unless we have the liquid biopsies available they will keep dishing out the chemo that half of us don't need. 

You need to get through the next few days and weeks with as much sanity left as possible. 

I think the F has affected your mental state, try and take a step back and see if you can rationalise that, see if you can isolate any feelings that happened around that time. Then see if you are just feeling a bit anxious, I was told I was over anxious, which was bollocks but I did get a prescription for some Oxazepam which helped me sleep. There are 3 that are metabolised in the gut rather than the liver , Lorazepam, Oxazepam and Temazepam but you will have to get your GP to talk you through any meds available that will suit your stomach issues and not worsen anything. 

Sorry for the ramble. Please do call the Macmillan helpline, they will allow you to offload your feelings and that in itself does help. 

Take a deep breath and tell yourself it's going to be okay and then work out how to make sure it is going to be okay. 

Talk to your GP and get a plan of action.  Get PALS involved if you feel you need a second opinion. Do see the counselling team. 

I tried talking to my oncologist, who was lovely despite the threats of locking me in the room but thinking back now I think I was talking gibberish most of the time.  

It's a scary time and you will experience a few meltdown moments. 

Where's my panda ...

Carolyn

xxx

Hi Carolyn28

I don't know if you are aware of the Optima trial currently running? It's to try and reduce chemo being given to hormone positive  women with a low risk of recurrence without chemo but who are node positive and take tablets for 5-10 years. Phase 1 of the trial went well. I am taking part in phase 2, but half are still randomised into the standard chemo treatment anyway, and are followed over several years to see not just the physical effects but everything and check the recurrence rate of each group. The other half of the trial have their tumour assessed and high risk still means chemo, the rest (most) avoid it

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-predict-when-chemotherapy-needed-breast-cancer-optima#undefined

Neither my oncologist nor I know which group I'm in. This could drastically reduce the numbers involved in a few years, but safely.

Currently the NHS don't pay for anyone node positive to have profiling so only private profiling is an option and very expensive.I went through the whole no chemo or chemo agony a couple of months ago too, as my benefit is 4%, and may drop the paclitaxel after my last EC as its benefit is 1.4% average.

Margaret

PS I love the pandas! x

hi Margaret, Londonmumof2

I had heard of it but didn't know what it was, I think I joined in with your chemo debate, didn't I ? I usually do. 

the pandas usually go down quite well when people need a big cuddle

Carolyn

xx

You did.  It's funny they we both ended up doing it in the end:)

Hi ladies, sorry for radio silence I have been to physio this morning and went for counselling this afternoon. And have some more weekly sessions booked. I do not have the energy to keep on at this anymore and will have to accept what’s happened and try to move forward. I’m not sure why they think I will improve with time and don’t have an ounce of energy left to argue. The more I talk about it, the more my head is fried and last night went to bed hoping I wouldn’t wake wake up

hi 

everyone says time heals and for me, now, four years later, I am starting to get a grip but I struggled. Partly because I was missed in a routine exam in 2012 so I'd had the cancer for 3 whole years and partly because my surgeon then missed a clearly visible 2nd tumour. 

According to everyone I sailed through chemo, but that's not how I remember it, I didn't suffer with the level of side effects you have but I was exhausted, depressed about my appearance and in pain from the taxane chemo, by Christmas I had had enough but by then I only had one round left and I could see the light at the end of the tunnel. 

But thinking back to the anti malaria tablets I didn't realise what effect they'd had on me until about 3 days in, then I just realised that I was thinking things that just weren't happening, I was imagining things, then I read the insert in the pack and the penny dropped, and I stopped taking them. Also after a bout of food poisoning I didn't realise how ill I was which was down to the dehydration. 

Also dehydration and water infections can affect your mental stability AND you don't necessarily realise it. 

Having a cancer diagnosis is bound to throw you off balance. Having to deal with chemo and losing our hair is hideous. 

If it wasn't for the lovely ladies and gents on here I am not sure how I would have got through it. Talking to people who 'get it' really helps. 

I booked myself a fabulous holiday to Sardinia in 2016 to 'escape' and the day before I couldn't get off the sofa, I hadn't packed and I was just sat watching air crash investigation feeling sorry for myself. Thankfully I popped on here and everyone sent packing tips and lists and kicked me into action. 

You can't give up, we won't let you.

how was counselling ????  my counsellor told me I had to roll with the punches and I only just recently got around to looking it up to see what she meant  ...

"adapt yourself to a difficult situation: Well, there's nothing we can do to change things. We'll just have to learn to roll with the punches. This idiom comes from a technique used in boxing, where the boxer moves away from the punch to avoid a direct hit."

Carolyn

xxxxx

hi

how are you feeling today ???

hugs

Carolyn

xxx

Carolyn28Still the same, spoke to on call go this morning and he has reduced omeprazole to 40mg once a day, and added Zantac twice a day to see if that helps, seems I need to collapse in a heap before anyone is going to do anything. The councilling yesterday was a pre one to se how urgent it is needed, as I was being referred anyway but as I was in centre I asked and they had a slot for an hours time so took it, she wants to see me next week and get some massage therapy in as well. Whilst it was good to get everything off my chest I just want to feel better and get stronger and that doesn’t seem to be happening x I got over the mastectomy and was doing well with my exercises and now feel everything is just falling apart, my wound hurts more, my arm hurts more, and just feel on a downward slope x

hi

I stupidly thought that once I'd had my last chemo at Christmas, literally Christmas Eve, I would be able go home, enjoy Christmas, celebrate the new year with a fresh start ...

I'm not sure why I thought this

From everything I'd been told about the cumulative effects and everything I knew about how quickly hair grows you can see I was delusional, I can see I was delusional but it was still what I expected to happen, and of course it didn't and then I floundered. 

I was due revision surgery which can't take place until your body has recovered from chemo, which is about 8 weeks, another HUGE clue that I wasn't going to be jumping up and getting back on with my life on January 2nd ...

I might have been my expectations over the reality that then caused the minor emotional collapse and the need to continually run away/hide/fight/cry/sit up all night chatting on here. 

By the time surgery day arrived my hair had started to grow back and my eyelashes popped back literally over night, that was quite strange. 

The professionals don't help because they try to minimise the impact, a bit like telling someone who is seasick that we're nearly there when the honest answer of 3 more hours would probably have them throwing themselves overboard. 

Chemo is brutal, as you have discovered, and even after one round you won't feel great for another few weeks. 

Adopt the brace position 

Repeat the mantra "I'm going to get through this"

Find some pain relief you can tolerate, with the free prescriptions the GP / hospital team shouldn't bat an eyelid about trialling things in small quantities, I was given 3 lorazepam .

Binge watch something on telly.

Sleep.

Eat nutritious foods to promote healing. Whatever you can tolerate.  I push chopped up fruit in porridge with a spoonful of honey. 

You can do this. 

Carolyn 

xxxxx

Carolyn28 apparently I’m not to contact the oncology team now as I am not having chemo, told me to contact my own gp who I can’t get an appointment with till the end of the month, and my breast nurse, who is on holiday, like you just couldn’t make this up x