New to the group

Hi there,

Sounds like we’re on quite a similar journey - but I’m just a bit ahead of you.....

.....Generally healthy and active, experienced symptoms of bloating and lower abdominal swelling. Diagnosed in November, surgery over Christmas, and confirmed as stage 2b (cancer in both ovaries and stomach lining, but nothing outside the pelvic area). Now having chemo - and with blood markers now back in the normal range, this is largely considered precautionary.

I’m currently on my 3rd cycle of Carboplatin/Paclitaxel and although I have bad days, I’ve found the anti-sickness meds very effective in allowing me to feel like myself most of the time. I found it helped, after the 1st cycle, just understanding the pattern of when my good and bad days were most likely to fall - and to plan around them. The tiredness can be overwhelming sometimes but, by giving in to it when I need to rather than trying to fight against it, I’ve been able to cope. With regards to other side effects (constipation, low white blood count, etc), there are meds for these too - just need to keep the medical team informed.

During the course of my chemo, I’ve had a follow up CT scan and regular blood tests, which have helped reassure me that things are going in the right direction - and I’d recommend asking whatever questions you feel you need answering along the way to maintain that level of reassurance and positivity. It’s amazing how much stronger you can be when you believe in the path you are on !

All the best, and it’d be great to read an update on this site about your chemo journey.

Love

Bx

Hi,

Glad you've found this site, which is such a great support. Chemo can be tough but as B.positive says, you do have good and bad days, and I found it helped to get out for a walk/ coffee with friends when I felt up to it. Chemo is nothing like it used to be- the anti-sickness meds are so good. I did occasionally feel nauseous but wasn't actually sick. A couple of days after chemo I called it my Zombie days, where I could hardly move or focus on anything, but then I really picked up and felt almost back to normal for a coupe of weeks before the next session. (I was diagnosed with Stage 3c in 2012 aged 40, and I'm lucky to still be cancer free since finishing treatment in 2013) I got my hairdresser to cut my long hair into a bob and then when it started falling out in clumps, she shaved it off for me and I had an amazing wig which gave me loads of confidence going out. 

It takes a long time to adjust to life after chemo, and some people expect you to bounce back but you need to be gentle on yourself because it takes so much out of you physically and mentally. 

Good luck with your chemo journey and try to keep positive. Let us know how you get on.

Natalie xx

Hi Hog,

Very similar story here, full hysterectomy with omentum due to a large mass (17x9) histology came back ovarian cancer graded at 1c ...chemo recommended for 6 sessions as a mop up for any stray cells

First meeting with your oncologist may be different to mine but at my first appt, a week after diagnosis,  I met my doctor, who was lovely, he took me through the scans and MRI scans to show me exactly what the surgeon had done, explained there was a small hole in my mass and I was to have 6 sessions of chemo every 21 days. He asked me if I was physically ok after hysterectomy .. he went through all the drugs I would be given and the side effects...there are an awful lot of boxes to tick but I have to stress they don’t all happen and he was quite open about what he thought I would experience and what I wouldn’t. Write down your questions you want to ask and I always took hubby with me, extra ears and he made notes...

so that was January 26, lasted about 45 mins, then was popped outside to wait for appt for the pre assessment appt which is with an oncology nurse.

The pre assessment appt was on February 11, so 2 weeks later,  ..., very through medical history taken, asked about allergies, took bloods,COVID test, Blood pressure and weight recorded, ask about lifestyle, if your eating,sleeping, exercise...just to see how well you are in yourself. 
lasted about 1 hour.

dates given for first chemo session, Feb 17...so just under a week later.

My chemo is Wednesday every 3 weeks, so had another one yesterday...once you get started on chemo you go to have your bloods checked 2 days before your next session so it’s Mondays for me every 3 weeks. 

I would say the fear of chemo is real, I found the period between diagnosis and starting chemo, stressful..I was basically scared, I didn’t know what to expect, there was a lot of tears. I reacted ok thankfully to session 1 and had about 4 days of being groggy and tired but picked up quite quickly.. and in the following period was bouncing around the house, buzzing in fact. So it’s not all doom and gloom, of course you will have good and not so good days as you go on.

I had chemo 2 yesterday and so far today all ok, but expect to be groggy over weekend, with aches in legs, the anti sickness drugs are great... 

yes your right cancer stories seem to be everywhere at the moment or we just register them more now we are one, I still can’t get my head around being a cancer patient.. my symptoms only identified Oct 16 and operation Dec 17 so I feel very lucky the treatment has been quick and I have had many positive experiences with my medical team... the cancer centre I go to is also very modern and now I have had two experiences of chemo I think it’s very do able, but emotionally it can be draining so preparation is key... eat well, sleep well and do some exercise (walking)  find some sit down hobbies to keep your mind occupied...

Prior to surgery I was determined not to sink, think positively about the situation and to surround myself with sensible friends/relatives who keep me level, the last thing you need are drama queens ...you will find the things you can control, focus on those..

And later on it’s a  good idea to get a chemo diary so you can document how your days go, as you can then see a pattern on how you will feel, what your temp is, when you needed to take meds ..stuff like that as the nurses will want to know all that sort of information...

lots to take in over next few weeks, if I can help I will do my very best to just that, as will all the other wonderful ladies on here..

take care

xxSue

Sue

thank you so much for your reply , hearing yours and the other ladies experience gives me reassurance and hope 

Can’t help being anxious re chemo treatment and particularly don’t want to lose  my hair as my daughter hopefully gets married in sept 

it helps to know the chemo journey and help and tips re diary etc

hopefully others will read these posts and take comfort from them 

i will update with my journey when I can to help others too

margo x

Hello again, and glad to hear you’re feeling at least a little less anxious about starting chemo after connecting with this group .

Just wanted to add, on the subject of hair-loss, that I’ve been cold-capping with my treatments. Now 2 weeks into cycle 3 and still got a “full” head of hair. I tend  to lose a little each time I wash/comb it but nothing alarming, and using gentle products and a soft comb, and keeping it in a short-ish style has really helped I think - and I’d say at this point (almost 1/2 way) in my treatment, I have about 85-90% of the hair thickness I started with.

Cold-capping’s not for everybody though, as you do have to keep it on for several hours. Personally, I only find the 1st 1/2 hour uncomfortable (as the head and body adapt from room temperature) - and a cup of tea and something to focus on really helps me get through that part. After that, apart from feeling a bit heavy it’s not that bad, and I approached it on the basis that if I’d hated it I didn’t have to carry on, and could revert to losing my hair - but at least I’d know that I tried. ! Anyway, there are some beautiful head coverings and wigs available as an alternative these days - and the Macmillan nurses offer fantastic support in helping choose the option that’s right for you.

It’s helped that I’ve been able to spread my Paclitaxel dose across the 3-week cycle rather have it in one hit, as this reduces the time I need to keep the cold-cap on (although it does mean I’m at the hospital EVERY Thursday) - I know this is not always an option.

Definitely worth asking about cold-capping anyway before you get started - after all, what better incentive than your daughter’s wedding?

Wishing you all the best,

Bxx

Hi Hog,

for me, what really helped when I was starting chemo was advice from my Brother in law who’d gone through chemo 20+ years ago. Much has changed since then - in particular the ability to treat the side effects and reduce sickness - but knowing that my scalp was likely to get very sensitive after chemo 2 and just before my hair started coming out meant I wasn’t surprised when it happened. So yes, do speak to other people (whether aloud or online!) about their experiences. Some will tell you things which then relate to your own experience; others won’t - but knowing that there’s such a range of ‘normal’ can also be helpful. 

It’s now a year since my surgery and all is going well. I’m still on Avastin every 3 weeks, and will wait to see what the plan is after that...

Hi Margo, so very sorry to hear your news, but some great advice here from the other ladies on the chemo.  Just to put my tuppence in re hair loss - I cold-capped too, and agree with much of what B.positive says.   I have fine hair but lots of it, and I lost about 2/3 all over, leaving enough that most people wouldn't have noticed.  However it was a mess and nothing like 'my' hair, so whilst I'm glad I tried it, there were definitely days when I wish I'd just shaved it off!  Early in chemo, before I lost much hair, I did go and invest in a wig that looks quite a bit like my old hair and style (but nicer!)  I didn't wear it much, (mainly due to not going anywhere during lockdown) but it was comforting to know I had it if I wanted to look a bit nicer.  And picking up on your concern re your daughter's wedding - I got married in November - less than 3 months after end of chemo, and wore my wig.  It was great looking like myself again, and whilst I didn't hide that it was a wig (i only had 6 guests so they were all family anyway), you really can't tell in the photos.    So, whilst it is a bit traumatic losing your hair, in a funny way it's quite liberating to try other things and the wigs these days really are good.  

all the best with it, and stay on this forum - there's lots of good advice and sometimes it just helps to share your 'wobbles'.

take care x