Update on treatment plan

Dear Jean

Thanks for posting to let us know how you're getting on. I'm really glad you had a good experience at the oncology unit. Will you be attending Neath or Swansea? I guess from the above that you'll have the second session after Christmas.

I think you've done really well to get all this sorted out pretty quickly. I had the same attitude to the cold cap as you. When I visited the Day Unit in the Velindre prior to starting chemotherapy they gave me one to try on and I thought it would be pretty uncomfortable to wear three separate caps all day.

There's loads of good advice on the site about dealing with any side-effects of chemotherapy if you have any at all so keep posting questions if you have them.

Have you been given a date for your surgery?

Hope Monday goes well. xxx love and best wishes for that. xxxx Annie

Hi Jean

You are having what I had,3 cycles, surgery, 3 more cycles. On this date last year I was about to start the post surgery chemo again. I couldn't be bothered with the cold cap either. I didn't want any extra discomfort and althogh no one wants to lose their hair, it can be a blessing in disguise on the mornings when you have no energy, not to have to cope with keeping the hair looking decent.

I felt very nauseous after the first cycle but after that was given stronger anti sickness medication which was effective. Do let the oncology team know if you suffer in this way so that they can give you what you need.

Here's wishing you all the best for next Monday. Let us know how you get on.

Love Mary xx

Hi Annie and Mary.

Thanks so much for your comments on cap in particular. You've confirmed what I thought. I am attending Singleton in Swansea and they are brilliant. Also got Maggies centre there. They haven't given me a date for operation yet only said it will be after 3 cycles and I will have Avastin added after op. Bit apprehensive about Monday but hey it's one step nearer to remission.

Thank you so much for your support its really helping.

Love Jean. Xx

Dear Jean

It's great you're having Avastin as that can improve the stats on remission. I've heard really good things about the Maggie Centre. Perhaps it's somewhere we could meet up. I've never been.

xxx Annie

Hi jean. I didn't have that regime so I've no advice to give. Just lots of good wishes that you tolerate it all ok and come out the other side with a great outcome. Keep us in the picture.

Linda xx

Hi Jean,

As far as the cold cap is concerned they strongly adviced against it in my hospital, and I agree with Sue that you re too tired to bother with making your hair look right anyway, I also feel if you lose it a bit then it is just as well to lose the lot, who wants patchy hair? It can be liberating, no hair to wash,dry,or style...my advice to you is try and get a wig before you lose your hair, so you could then match your colour or style,I have lost mine twice and started losing it on the thirteenth day after the first chemo I rained hair for a week, then it was gone,

really it is not as bad as you think....best wishes love x G x

Good advice Gwyn - and also watch out which wig shop you go to. I went to the first on the list and it was frightful. Wigs made me look like an Babs in East Enders. There's a brilliant wig-shop in the arcade in Cardiff. They are owned by the wig manufacturer so have hundreds and hundreds to choose from. xx

Hi Whippet

I am thinking of going to the wig shop in Cardiff. I have ordered a turban and some scarves/bandanas on line so waiting patiently for them to arrive. Also had my hair cut shorter last night so its not so obvious its coming out. My hairdresser is also one of my yoga students and she will shave my head for me as soon as hair falls out. Pre assessment went well yesterday so all systems go for first chemo on Monday.

love

Jean xx

Dear Jean

Let me know if you'd like to meet up if you're coming to Cardiff. There's a really nice comfy cafe on the ground floor of the arcade under the wig shop.

Good luck for Monday. Take in something to amuse yourself. Apart from that I know they'll be looking after you and will take loads of time to settle you in on your first visit. xxx Annie

Hi Annie

When I had my pre assessment yesterday they made me very welcome. They said something about having the new cold cap but still not convinced. lol. Would love to meet you when I go to wig shop. Not sure yet how I go about getting one so will ask on Monday. They are all mad on the unit so I will fit in well!!!!!

I will let you know when I go to Cardiff for wig.

love

Jean xxx

The hospital should really have already given you a wig voucher for £120. I had mine on the assessment day. You'll find the ladies there really lovely and they make it quite a special event. I took my daughter along and we spent over an hour trying on different wigs. They like you to make an appointment so you have the place to yourself.

I'm really pleased you had such a lovely welcome at the unit. Perhaps the Velindre also have a modern cold cap machine by now. I think it's a matter of how thick and strong your hair is to start with. I was recommended the cold cap as I have a mass of hair.

It'll help the time pass if they're all mad in the unit. I found the staff extremely kind and jolly. Ours brought round Roses Chocolates and gave us a quiz to do. I just needed to take in my earphones as I find local radio rather irritating and it was on full blast.

I'm sure we'll get on very well if you're mad too! It helps cope with this disease doesn't it!!!

love Annie xx

Hi Annie

I'll ask about voucher tomorrow. I have very thick hair so I suppose that's why they offered the cap to me. It's just the thought of an extra two hours on top of the five hours of chemo that's putting me off too.

My daughter is coming with me too for wig so it should be a laugh. It sounds as if we will get on well. I always say you don't have to be mad but it does help! Lol.

Love Jean xx

I think you'll have to decide by the time you go in tomorrow because the Cold Cap won't work at all unless you wear it from the first session. I'm of a similar mind to you in that the additional time at the hospital was off-putting. They didn't have the new one so the hassle didn't seem worth it because they would have had to change the cap 3 times. I feel quite strongly that ladies shouldn't feel embarrassed about having no hair when it's a fashion statement for men.

xxx From one mad hirsute to another - hope tomorrow goes well. love Annie

Hi Annie

Thanks for all the advice looking forward to meeting you for a cuppa when I get my wig.

Love Jean xx

Hi Jean

Totally agree with the other ladies....cold cap is a waste of time. I found a lovely wig which was surprisingly comfortable, also there are so many nice scarves and hats out there. Always ask for any help or advice you need, never suffer in silence and I'm sure you will be fine.

Good luck for Monday, you sound very positive, that always helps!

Love Linda xx

Thank you girls. You are all such a help. It seems I've made the right decision not to have the cap.

Love Jean xx

Dear Jean,

I had Carbo/taxol. Loosing my hair wasn't a problem, I have a wig and I bought hats that I could thread colourful scarves through (there are loads of web sites for headgear for chemo patients). My hair is just starting to grow back now, I had my last chemo 12th Oct. I look like a badger....grey at the sides and darker in the middle.

I didn't have too many side effects from the chemo and so long as you take all the anti sickness medication they give you to take home you should be fine and it's usually only 5 days supply they give you.

Good luck for Monday, just think that will be one down 5 to go.

Love Chris xx

ive not bloged on here befor but have been reading all your blogs since my chemo started in april,i just wanted to say i used the cold cap and still had a full head of hair when chemo finished, i allso only found it a bit pain full for the first 10 mins, after that you get used to it . maybe i was one of the lucky ones. love jackie.x

Dear Jackie/Jayne

That's really interesting. I was advised that if you have thick strong hair it's more likely to survive the chemotherapy if you use the cold cap - but if it's fine or treated it's already weakened.

Does that advice accord with your own experience? I only had carbo-platin the first time but will be given Taxol too next time so I'm just thinking about a strategy now.

Any advice you can give me would be really helpful.

It sounds as though your chemo must have come to a finish now. I hope you're feeling well and getting stronger every day.

love Annie xxx

hi annie, yes that was based on my own experience, my hair it fairly thick but its also has been coulerd loads over the years so not in good condition, you do still have to treat gental baby shampoo, dry only on a cool setting ,i wont say no hair come out at all , but no one ever noticed i was on treatment , and when i went to hair dressers a couple of weeks ago thay was suprised when i told them i only finished chemo in aug, the pain at first it like wen you eat an icecream and it goes to your head , but it feels ok after about 15 mins, its worth a try i used it as i didnt want my young grandchildren asking me about my hair. i had both caboplatin and taxol. im doing ok thanks still getting afew niggly pains supposed to be from my op but you never stop thinking its something else. i do hope your treatment goes well, and if you decide to use the cap i would be intrested to know how you got on with it. jackie.xx

Dear Jackie

This is really helpful advice. Apparently there's also a new cold cap which looks a bit like an old-fashioned salon hairdryer and it avoids having to change the cap 3 times during the infusion. Worth fundraising for isn't it.

I might well try the cap. If the hair falls out anyway I'd just forget it. I'm equally of the belief that women should feel comfortable going around with no hair. It's positively fashionable for men so why not for us - it's just we're not used to it.

Ah so many decisions to distract me from the real issues!

I have niggly pains too even though my op was getting on for 2 years ago but apparently this time it's likely to be niggly tumours as the CA125 is rising slowly but steadily. It's still within normal bounds at the moment so I'm just trying the Budwig Protocol to see if that does any good - though I'm getting a bit bored with all the cottage cheese.

Stay well, love Annie

hi its was the new one i used at scarbo hospital, just give it a try you have nothing to lose, thay still gave me a wig but i never had to get it out of its box, at my first scan last month it was clear except a strange fold in my stomch he wasnt worried and said it was proberly my ulsers that was showing,i dont have alot of faith in the hospitals in my area. i do hope every thing goes well for you its so hard at times isnt it. love jackie

Dear Jackie

I'm sorry you have worries about the hospitals in the Scarborough area. The reports on all the cancer areas will be published online on the Ovacome site soon so you'll be able to compare the findings for your area with other areas in the UK. This works both ways really - if it's good it will be reassuring for you. If it's bad I suggest the support group in your area start lobbying your MPs for better services and support.

It seems they are high-tech with the new Cold Caps. We don't have them in the hospital I go to in Cardiff - though perhaps Jean will tell us it's different in Swansea. (Looks out for the salon hair-dryer looking thing in the ward Jean - that's the new cold-cap device and seems it worked well for Jackie).

I'm really pleased the first scan was all good news. I haven't had one yet though I'm 13 months after the end of my first line. They have threatened though as my CA125 is rising. I'm keeping my head in the sand as long as possible and unless something gives me cause for concern I keep away from hospitals as much as I can. They seem to make people ill! ha ha.

It is tough sometimes and that's why this site is so good. I can't keep worrying my family so it's good to let off steam here but in my case that's usually not talking about what's worrying me but having a laugh and a bit of banter to distract myself.

May you have a long long remission and as little worry as possible.

love Annie xxx

dear annie, i had the first scan 3 months after my treatment finished next one is 7th jan i thought thats what happened with evry one maybe the hospital isnt as bad as i thought lol, its not so much a bad hospital but bit small i finished up going for scans and treatments at 4 diffrent hospitals andt hat means i dont see the same dr twice. im the same as you and carnt talk to family.you take care i know this site is great ive learned so much from it , as everyone is going through the same thing. hope you have a lovely christmas and a happy and healthy new year. love jackie xx

hmm funny the different approach re scans. They thought I had undifferentiated tumours which is kinda bad news but then they changed their mind after 6 months and when I asked they said they decided it is serous tumours but forgot to tell me the panic was off!!

Anyway I have serous stuff and I've had a blood test and appointment every 3 months. So far the bloods result has been pretty stable so for the first year I just saw my oncology nurse and had a laugh.

Last time the CA125 count had doubled so I had to see the oncologist who was the harbinger of doom and gloom and asked if I wanted a scan. No way! I'm feeling fine at the moment so booked a skiing holiday in March. I'm generally monitoring things as I go.

Comparison is good! xxxx love Annie

The liberation of shaving it all off was a revelation - the patchy thin hair thing is worse and I did it quickly one the depressing hair fallout began - felt so much better and now do what I thought I never would - go out naked (at head level!)

Best of luck now you have everything setJean - stay strong through the side effects, you never quite know what you will get! And we are all here for soundings as and when needed!

Sue

Xxx

If I find my face looks OK without the hair and I like the shape of my head I think I'd follow your lead Sue. My dentist suggested getting my teeth whitened would improve the look - cheeky woman!

Wishing you all the best Jean for Monday when you start your chemo ..Drink lots of water through out .... its most important to flush your kidneys through ..

Just like Sue I was much happier when the hair had gone as that in between stage was just awful and it went everywhere ....

No wig ..Just lots of hats and scarfs and its growing back really well now ..getting curly too ...

Take good care now xx

Love Jan xxx