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My mum is starting chemo

16 REPLIES 16
Anniej
Community Champion

Re: My mum is starting chemo

My oncologist wrote my prescription at my first meeting. My health trust covered the whole cost of the wig, which meant I could have whichever one I wanted from the named supplier. Some Trusts only make a contribution! Also, I think it does depend on the treatment . My regime was FEC-T which inevitably  makes your hair fall out. If your mums BC / chemo nurse is easy to contact I'd check with them. X

TheJV
Member

Re: My mum is starting chemo

Hello, thank you for your comment, it all went very well.  Like you, her lovely hairdresser took care to make sure we were alone and treated mum brilliantly. She even bought mum a turban to wear as we left. Although we both cried as it was happening, it was quite cathartic as up until now neither of us has had a good old soul-cleansing cry at any stage.

 

The hairdresser made a very good point that I hadn't considered: this was mum controlling the hair loss and her reaction to it rather than the other way around.  Mum actually found it quite liberating and she totally rocks her new look.  

 

On the SE side of things - absolutely none so far but we're only on day two and so it looks like, from the threads below, things could start to slide tomorrow. Fingers crossed that's not the case but forewarned is forearmed so if there is a change for the worse, it's not going to come as quite such a shock for either of us.

 

One thing though, no one has mentioned a wig to mum, who should we ask: the oncologist or the staff on the chemo ward or someone else..?

Anniej
Community Champion

Re: My mum is starting chemo

Hi , I had my hairdresser shave my head, but I did wait until it was coming out in handfuls and I was coughing up hairballs, so think your mum is pretty great! My lovely hubby insisted on coming with me, so I asked him to video it knowing that was a distancing technique.  (It's the teacher in me...) He managed extremely well, helped by large glasses of wine supplied by my kind , thoughtful and talented hairdresser. I also needed one. I said I didn't care but found it very hard in the end. I took my wig with me and walked out wearing it, and it looks great. My hairdresser cleared everyone from the upstairs area and it was done in complete privacy at the end of her appointments. Couldn't have had a better experience . Hope your mums goes well. Bless you both. 💝💐

TheJV
Member

Re: My mum is starting chemo

Hello Toni86

 

Its 1:30 in the morning and I'm reading yours and your mum's story...and it's almost word for word identical to my mum's and mine.  Today was day one of mum's chemo treatment, the FEC part of the FEC-T treatment. She's pretty stoic about it all, coping, I'd say, far better than I'm coping. Tomorrow will be a tough day, she wants me take her to have her head shaved. She'll not cold-cap and is adamant that it's the right thing for her to do.  I'll do anything I can to support her but (selfishly) I'm not sure how I'll cope with that as visually I think she'll go from looking like my mum to my mum the cancer victim.

 

Ladies on here - thank you from the bottom of my heart. Reading your tips and hints is helping me formulate a "what if this happens" plan and that helps me. It's been really helpful to understand about days 3 to 8 too, today has felt odd as she's so bouncy and bright. I'm a real planner and not knowing what is going to happen is tough, but then I guess if side effect-wise nothing is wrong and everything can be right it's better than worrying about if what is or isn't happening is right or wrong?  Not sure I've articulated that very well...

Toni86
Member

Re: My mum is starting chemo

Thank you xx
Anniej
Community Champion

Re: My mum is starting chemo

Toni, everyone is so different . I made a conscious decision to stay in bed in the mornings after the first chemo. The district nurse did my fsg injections so I got up after that. Also, the nights for me were disturbed so I was always tired the first few days. The second round was easier as I then knew how my body responded and could plan accordingly. I kept a diary of temperatures and symptoms.  Week two is the worst as due to platelets being low I played safe and stayed at home. Not worth picking up an infection as it may end up as a hospital admission. Get hand gel and anti bacterial wipes. I even use them in public toilets! Your mum will get a chemo pre assessment and a lot of info then. The chemo procedure itself is painless , and the SEs can be managed. The treatment will be tailored for your mum. It is very doable. Have faith in the medical team. They only want success. Best wishes. X

blueash
Community Champion

Re: My mum is starting chemo

Hello again Toni,

 

It seems to take longer to recover from with every cycle and the reason for that is that when you start your blood count is usually fine with everything at the correct levels. The chemo lowers many of the "good parts" of you blood and just as you begin to recover you get your next dose. It has to recover sufficiently for you to have chemo and that is why you have a blood test a day or so before your next dose. However it has not gone back to what it was before you started. Every session knocks it back still further and in the end my blood counts went so low that they had to stop mine after 4 instead of 6.

 

They gave me iron tablets and were talking about giving me a blood and platelet transfusion but decided that I had had enough. I asked them if I could have oxygen because I was so tired  all the time and they explained that there was nothing the matter with my lungs and I was breathing in the oxygen just fine BUT the cells in my blood could not carry it.

 

I was eating liver, drinking Guinness and taking iron tablets but it was no good and they stopped my chemo early. I continued with Herceptin and radiotherapy. I still have 3 more Herceptin injections to go - you get them every 3 weeks for a year.

 

Sue C
Community Champion

Re: My mum is starting chemo

Happy to answer any questions x

Toni86
Member

Re: My mum is starting chemo

It really helps. The more I hear the more I feel I can support her properly xx
Sue C
Community Champion

Re: My mum is starting chemo

Hi

It would be a really good idea for your mum to join the forum. There is a monthly chemo thread that she can chat to ladies going through it at the same time. The fear of chemo is far worse than reality. It really isn't that bad.

Personally I did stay in bed for a few days, which I think was days 2,3 and 4. I didn't feel unwell, just extremely tired. So just watched TV, while my daughter made me cups of tea! This will be the time when your mum may need you. I gradually started to do things over the next few days and recovered by about day 8. I didn't leave the house for that first week. Everyone copes with it differently though. It's a good idea for her to keep a diary so that she can follow her symptoms each cycle as there tends to be a pattern.

Hope this helps xx

Toni86
Member

Re: My mum is starting chemo

The difficult days 3-8, the bad week... will she just want to stay in bed? Sorry if my questions seem ridiculous xx
Toni86
Member

Re: My mum is starting chemo

Thank you Sue, thank you Annie. It's so so helpful to hear from your perspective. The hardest thing for mum at the moment is how scared she is because it's all so unknown. I will be reading all your replies religiously just to try and understand a little bit.
Yesterday was a bad day, it was the day after finding out she would need chemo and she said it felt like day 1 again, being given the cancer diagnosis all over again. I would really like her to sign on to this and read and chat for herself, I feel so strongly that it will help her through it. Hopefully she can.
Thank you so much for sharing with me. Xx
Anniej
Community Champion

Re: My mum is starting chemo

Hi Toni, what a good daughter you are. From my experience you need someone with you. Chemo and anti nausea meds made me feel as if I was drunk. You don't say what regime she is on, but if it is FEC-T then that is one of the harsher ones. Definitely hair loss, but she'll get a lovely wig. I'm keeping mine for afterwards for bad hair days! Lots of shopping to get unperfumed toiletries as the chemo is murder on the skin. Cycle goes. Chemo week with steroids, and possibly injections in the tum to start the body making platelets. Crappy week after that as your body has no resistance to germs. Good week as you perk up and stabilise ready for next chemo. Chemo fatigue is not like just being tired. It's like being in a fog, or drunk, or feet in concrete and just plain not being able to do anything. But, and it's a big but, there's no rhyme nor reason to the side effects. Your mum might just sail right through, and I hope she does. Round one might be good, and round two not. We can tell you our journeys, but until you experience it yourself you can't know. Have mum get on here and we'll help her along. Lots of advice on nutrition on here as well as stuff to combat any side effects. I haven't had any mouth ulcers and I'm half way through chemo. I Would say be alert to what may happen, but please do not assume that it will. Lots of luck. X

Sue C
Community Champion

Re: My mum is starting chemo

Hi Toni

It would be a good idea if your mum had someone with her, even if it's just for a chat and a cup of tea. If doesn't hurt, but can make you feel abit woozy. I had my mum with me and she kindly gave me lifts to and fro. Then the difficult days are 3 to 8, and she may need help during that time, just simply in terms of, eg, making dinner. The fatigue is quite challenging then. Hopefully she will feel well after that. The middle week is when you especially need to look out for infections.

Hope all goes well for your mum xx

Toni86
Member

Re: My mum is starting chemo

Thank you so much blue ash. That was very helpful. X
blueash
Community Champion

Re: My mum is starting chemo

What a lucky woman your mum is to have you!

 

Ok well she can try the cold cap if she is worried about her hair. I used it and it worked great on me. The side effects are greatly minimised if you can not eat the day before and the morning of chemo. A couple of reasons for that but google Valter Longo and fasting before chemo to get the latest info.

 

I used a cold cap and did the fasting and kept my hair had no mouth ulcers, cold sores, tummy troubles ect. I did still get very tired and it does not feel better even with rest.

 

With chemo you are at risk for infections so I would minimise any contact with children/pets if at all possible. Get someone else to feed and clean up after any pets. I only saw my grandchildren in my "good week" which is the week before your next dose.

 

If possible get her to have a PICC line put in. Some places offer it right away other places only if your veins collapse. Having the chemo does not hurt at all BUT if they have to faff around with your veins it can be painful hence why I recommend a PICC line. That is a semi permanent line that goes in just above your elbow and stays there until you have finished chemo. All your blood tests are done via it and it is painless to install - takes them about 15 mins and the use a local anaesthetic then you need an x-ray to make sure it is in the right place. You have to have that flushed every week to 10 days sometimes a nurse comes home to you other times you have to go to your unit. Depends on what goes on in your area.

 

You feel fine the day you have it and the day after but it seems to hit you on about day 3 and last until day 8. She might get injections to do at home they are to boost your immunity.

 

Anything else just ask and tell her not to worry - loads of us have had it and we are still here xxx

 

Toni86
Member

My mum is starting chemo

Hi, please help. I'm struggling with knowing how to help my mum. I've researched about chemo but what I really want to know is people's experience with it. So that I have an idea of what she is about to go through. I don't know anyone who has been through this and I really want to help her and there must be more I can do than just talking positive.
Her story... at her routine 50 year old check up they found a lump. She was refered to the hospital and they scanned her and took a biopsy (the most horrendous couple of hours, my poor mum was terrified. It was such a shock) We got the horrible diagnosis that it was cancer (another horrendous day) She had the lumpectomy surgery and recovered brilliantly (I still can't believe how brave she was) and she was finally given some good news. Clear margin and no spread to the lymph nodes (a wonderful day, this time we practically skipped down the stairs from the hospital) We had to wait a while for the results of what treatment she would need. We were so hopeful that it might just be radiotherapy but unfortunately the cancer was stage 3, and because of her age they want to give her all the treatment.
As I understand it she is having 3 lots of 2 different types of chemo, with 3 weeks in between each. Then radiotherapy to finish up.
It sounds like such a long time. And all the side effects... hair loss, sickness, tiredness, mouth ulcers, numb hands and feet. How can I possibly help her through this? Will she be able to get to and from the hospital by herself? Will she want us there during the chemo? How will she feel during and after it? Does it hurt? How long after having it will she feel poorly? I have 2 young daughters, will I have to keep them away from her incase they give her any germs?
I feel awful asking someone to relive their experience but I don't know how else to understand it.x