Hi all,

Today I finally got back on track with chemo after having my port fitted.

Feeling ok so far, tried the cold cap again although my hair is so thin I can only just tie it back now and I’m still having issues getting a wig.

Emma … how are you, hope you’re cold free and feeling good, how’s the hair doing?

Maggie-May … how is your husband, any further forward? Hope you are well and managing, horrible time for you both.

Miss-k-1 … Thank you for your advice, hope you are keeping well?xx

Nichola xx

Hi. So lovely to hear your treatment has got back on track and you are feeling reasonably well. 

Hubby is in hospital now as he is dehydrated and at high risk of malnutrition. He is on a waiting list as an in patient for a stent so hoping we hear something tomorrow. He has been on the waiting since last Friday, admitted last wednesday. 

Hope everyone else is doing as well as can be expected. Sending you all love and hugs xx

I am glad your back on track! I decided to visit a few wig fitters myself, and ended up buying my own and asking the daycase I visited for my wig for the voucher and provided that to my wig fitter sre and they refunded my voucher amount. Sadly the voucher doesn't cover the whole cost, not by far. But the right fitters have some fairly affordable wigs. I hope this helps. I am glad you tried the cold cap though...I just couldn't manage it myself, headaches are a constant for me at the best of time when my aunt flow visits so to have that with the cold cap instantly put me off, and sadly I was also one person who it didn't work for, as my first cycle and also first and last cold cap didn't help my hair, as it instantly felt like a rocking horse head of hair, that thick straw harsh feeling rough hair and it got very matted and unruly....this is why I stopped it...a week later I shaved it after advice from my wig fitter telling me it would start to matt up and then fall out upon brushing So I decided early on to just get rid and start a fresh...sadly as it's fallen out and thinned massively in patches I do have to keep shaving it for now as I'd like it grow back the same length of possible. I don't have completely bald patches but to say how thick my hair usually is there's spots and big areas you could literally count the hairs that are there  .

Anyway, best of luck to you and hope you manage the side effects well my lovely, chin up, we're here if you need to talk! Just remember although we sometimes feel like it, we are never alone in this! Take advantage of this site. All my love and best wishes to you xx

Hey, that’s great news I’m so glad you are back on track, that must be a relief. How are you feeling?  
I’m ok thanks, my cold is gone but I have a lingering cough that the nurse said is because of the chemo irritating my throat now. It’s a bit annoying but I feel ok in general.

i’m not sure about the hair, it’s shedding so much and although I do essentially have a full head of very thin hair, I’m just not really convinced any of it is fully attached anymore! I think if I was to give it a really good rub it could all come off! lol. I’m being so gentle with it but I wonder if I’m just prolonging the inevitable if you know what I mean? I’m just holding out hope that the shedding will slow down when I move onto paclitaxel, this afternoon will be my last EC xx

Hello!!

How are we all?

Emma you must be almost finished your treatment, is that right? How are you feeling, how’s the hair are you still using the cap? 

Maggie-May, how is your husband getting on? I’m hoping he has stent fitted and is doing well. 
How are you coping?

I had few more delays, nothing surprises me anymore! However, I’m due to start pacliataxel next week so that’s me now half way through! I have just enough hair to scrape back into a pony tail which is fine around the house but i have to wear the wig when going out.

Hope all is well, be nice to hear how you are both doing.xx

Hello i’m good thanks glad to hear you’re doing ok despite more delays. I had some delays of my own, ended up in hospital with an infection so had my 2nd paclitaxel delayed by a week, just had it today. Unfortunately I really struggled with the cold cap during paclitaxel, don’t know what yours will be like but mine required wearing the cap for 5 hours. The 1st one I had to take it off at about 4 hours cos I had a terrible headache, this caused major hair loss over the last few weeks. I tried again today but it was too painful so gave up after about half an hour then just shaved my hair tonight. Mixed emotions but I do feel a bit of relief to be honest. I hope u can keep going though because i do think it was working for me if I could of kept it on xx

Hi. Lovely to hear from you. I am sorry to hear you have had more delays. It's so frustrating isn't it when things don't go to plan. It's very stressful time without adding to the situation. Hubby had his stent fitted 5 weeks ago but unfortunately he has been in agony ever since. He can only get comfortable sitting in bed, so unfortunately that's where he spends all of his time. He has seen the pain management team who have adjusted his medication and said they think the pain is nerve pain rather than muscular. They doubled his morphine dose so he is now pain free, but spends all day and night asleep, just waking here and there for refreshment and a visit to the loo!! This is such a terrible disease. It's heartbreaking watching those you love suffer. I feel terribly guilty as I have also returned to work this week. I have been off since he was diagnosed in November and took voluntary redundancy. We have obviously gone from 2 healthy wage packets, to 1, and I can't sit at home forever. It does however give me a bit of respite ftom caring for him, as much as I live him I need that. Sending live and hugs to you all. Take good care of yourselves xx

Hi, sorry for my very late reply I was unwell after starting the pacliataxel ended up in hospital with infection/covid  much better now and only 1 more round to go! I’m still managing the cold cap but have to wear my wig when going out.

Emma .. how are you doing you must be finished by now? Hope you are well, be lovely to hear how you getting on.

Maggie -May .. hope your husband is more settled and doing better how are you getting on back at work?

Nichola xx

Hey so good to hear from you! Oh poor you, same happened to me after the first paclitaxel. Good for you still managing the cold cap, well done it will be so worth it. And only 1 round left that’s great. Are you doing radio as well? I’ve just had my first 2 of 10. It’s super easy and quick. Because mine was the left side I have to hold a deep breath a couple of times but apart from that it’s very straight forward. And I start tamoxifen on Monday :( not at all looking forward to that but needs to be done xx