Loved one

Hi noodleh and welcome to our group.

I’m sorry to see your mum has had this diagnosis, and hope it’s not too long before the stage and treatment plan are determined. Her consultant or gp can prescribe medication to help with both the nausea and the pain so I’d recommend your mum gets in touch and explains how she’s feeling. Has she been taking any standard painkillers like paracetamol? 

We are all different in the symptoms we experience, so it would be difficult to say what to look out for in particular. My biggest “thing” when I was first diagnosed and when I had a recurrence was a hot water bottle on my pelvic area where my pain was. I had one virtually 24/7! It did help, plus I was prescribed stronger painkillers as time went on. For nausea, I had peppermint tea, and ginger biscuits. 

She shouldn’t have to suffer with these symptoms, so I hope she can get some relief soon. You’re very welcome to come here and ask questions as things move forward and we’ll do our best to help support you. 

Sarah xx

Hi Noodleh,

I'm sorry to hear about your Mum yet comforted to hear her daughter seeking care for her!

Once treatment begins then any symptoms usually disappear very quickly for most people. As SarahH21 said, the symptoms are extremely varied. I had no symptoms and only found on a routine smear (stage 2b). 

I can't add anything extra to what SarahH21 offered about the symptoms but just wanted to jump in and say hello to you and that there are women here who are reading your post and can support the tremendous journey you have ahead caring for Mum. Xx

Thank you for replying! 
Do you have any advise when it comes to chemo? I know my mum is scared for this part of the treatment. Though she is trying to hide it x

Thank you for replying! 
She is now drinking the teas, though the codeine she’s been given is wiping her out. 
I will also try the hot water bottles too, thank you. 
Do you have any advise when it comes to chemo? I know my mum is scared for this part of the treatment. Though she is trying to hide it x

Hi noodleh 

The chemo was the easiest part of treatment for me, but your mum will probably just be a bit scared of the unknown.  I don’t know what chemo your mum will be having but mine was Cisplatin.

It’s a long day as it takes several hours, and I would recommend wearing comfortable, loose clothes where it’s easy to go to the bathroom as you have to take the chemo pump stand with you and need to be able to do things one handed. 

She will need to drink lots of water to keep her kidneys well flushed as chemo can be hard on the kidneys. Take something to do-phone, Ipad, book, puzzle book etc to keep occupied. Some snacks are also useful!

Having chemo was completely painless-once the cannula was in my hand I didn’t feel anything and I actually found it very relaxing in the comfy recliner chair.

Tell your mum to make sure that she lets the nurses know if she experiences any kind of side effect. She will be given anti sickness medicine through the IV when having the chemo, and will be given tablets to take home. If she is having Cisplatin, this is usually a low dose chemo to help make radiation more effective and doesn’t result in hair loss.  I never felt any side effects from the chemo, and was never sick or even nauseous, it wasn’t a difficult experience for me at all, and I hope it’s the same for your mum. 

However if she is not having Cisplatin and having a different chemo, things can be different. You haven't mentioned radiotherapy, but I’m assuming your mum is also having this and that her stage has been established? When does her treatment start? I hope it’s very successful for her and that she tolerates everything well.

Sarah xx

Hi Noodleh,

Your Mum will be monitored and if there are any issues with the chemo then the Dr may tweak dosage or even brand. I reacted badly to Cisplatin and so they lowered the dose and eventually switched brand for me. Just be sure to voice any concerns you have, any sensation or discomfort your Mum feels she should tell the nurse right away. 

However because it's low dose it's usually very 'easy' especially at first. I found that I felt extraordinarily tired 3 days after each infusion. The best way to handle the fatigue is to allow it to happen. I'd set myself a task like washing some dishes but then often would feel weak and just stop midway, I wouldn't even force myself to finish a simple task if I felt tired. That was tough at first (Mum of 2 here) but I was determined to put myself first. That said, I also seized any spurt of energy and would go for walks or a swim if I felt that energy. 

Go easy but don't be an invalid...that was my mantra :-)

As the weeks went by I felt much more fatigued. Week 4 was awful and my hubbie didn't think I was going to continue. Sometimes I had to be lifted onto the radiation table because I was so weak (low blood pressure and very low white blood cells). However I received a lot of help and care from the Drs, nurses, family and friends and when I look back I just remember that and not how awful I felt. 

Most people feel pretty bored through the chemo, it takes a few hours and is just boring more than anything. Take books, puzzles, a friend or family to chat with. 

Because the chemo is low dose there shouldn't be any hairloss or anything. Infact my hair became thicker and with a curl. My daughter calls them my "chemo curls"!

It's great you are seeking support and advice but do keep in mind that other people's stories and even statistics mean nothing to an individual. Your Mum is going to have her own set of experiences and it sounds like she has you with her for every step of the way!

That’s a really good point  about everyone’s experiences being unique. We are individuals and all react differently, so some people can sail through with little negative effects while others may struggle. And statistics are not something I would ever even bother reading-they are out of date when they’re published and don’t reflect the person at the centre of things. 

Sarah xx

Hi

Depending on the stage/ size etc  can make a significant difference to the treatment plan  i have stage 4 so have had surgery, chemo and now about to have chemo and radiotherapy combined. She should never have to suffer in pain so speak to her doctors who can adjust her meds accordingly. This can be with her gp.

In regards to the chemo, I had a combination of carboplatin and paclitaxel and the side effects were quite bad, I struggled with eating all together, nausea and sickness, hair loss and generally feeling rubbish, however they reduced the dosage half way through which helped a lot. So I would advise that your mum is really honest as changes can be made. I am about to start with cisplatin in 2 weeks time alongside radiotherapy so hopefully the side effects will be milder as others have suggested. 

Good luck with everything 

Thank you for your reply I really appreciate it. She has spoken to them and has been given medication to help with the side effects. The hair loss was painful for her, I didn’t realise that the hair loss process would be painful, but I’m helping with scarf wraps and she is still as beautiful as ever. 
I’m sorry to hear you are also going through this, and I wish you a speedy recovery and send you hugs and positivity. 

Hi Sarah, 

She is having a more aggressive chemo, so she has lost her hair within this past couple of weeks, which I didn’t realise was a painful process, she couldn’t rest her head as it was sore. She is getting some oils to help with the soreness. She has chemo ever 3 weeks currently, she has been given medication to help with her side effects, which seem to help, she has less of an appetite and can become nauseous. We are also in the stage of checking if she has the BRACA gene, as we have had a lot of cervical, womb and breast cancer in the family. I am also being tested.

The actual chemo is long, but she is allowed a family member with her and has been taking her kindle, bless her. 

Thank you for your reply, I really appreciate your advice and support.