I've just woken up on my fourth morning in hospital with febrile neutropenia, hair coming out in handfuls every day, thinking 'this wasn't how it was supposed to be'. I hoped I would breeze through chemo like I breezed through 4 lots of surgery in late 2013, helped by my positive approach to healthy eating and continued exercise, as well as by my general fitness and supportive partner and friends. It started well. After my first FEC chemo on 9 January, I felt pretty good for the first 10 days and was starting to feel quite smug. But on day 13, the niggling cough that began more than a week earlier and my oncologist had told me my body should clear easily, had turned nasty and I had a temperature over 38 degrees. I went straight to the hospital Emergency Department where I was admitted and put on intravenous antibiotics. Now, four days later, I am still in hospital waiting for my blood counts to improve so I can go home. My partner is 1000 kilometres away. All my dragon boat friends have gone away for the weekend to have fun at a regatta I planned my treatment schedule around attending myself. My hair is ridiculously thin with a wide, wide part in the middle, but I have no chance of getting to the hairdresser to shave it before the end of the long weekend, by which time I will look like a sad old guy with a bad comb-over. (Think Norman Gunston) How did this happen? I try to tell myself that those life-saving chemo drugs have blitzed my blood cells and hair follicles, so they must be really nuking any cancer cells, but a positive attitude is pretty hard to find right now. I am facing hair loss alone, with no control, when I should have a freshly shaved head and be partying, surrounded by my fabulous pink sisters from the dragon boat team. I guess it just shows you can't expect your cancer journey to go to plan. One day at a time! Viv

I'm so sorry that you have struck this bad run first up! It is probably just plain bad luck that you have picked up an infection at just the wrong moment. This happened to me on my 4th cycle and I have never worked out where it came from as I was always pretty careful to avoid crowds etc and like you had good general health and fitness. I knew I was pretty sick when I actually wanted (not quite the right word) to go to hospital. I had 3 days in and then felt pretty ordinary for the rest of that cycle. It really shook my confidence and it was pretty hard to get my positiveness back. I had the Neulasta injections for the rest of my chemos and never had another problem but it does take a lot out of you and I never felt as good after that. Hopefully you will bounce back as it is only your first round so your body will be in a better position than mine was by round 4. You are right when you say that cancer journeys do not always go to plan but you have the sort of attitude that will have you readjusting soon. Give yourself a chance to get over this bump and then get back to the next step. Hope you are feeling better soon. Sending lots of good wishes for a better time next chemo. Take care. Deanne xxx

Norman Gunston lol . I think you will need this sense of humour over the next few days Viv.It just goes to show that this journey is full of unknowns isn't it?I hope that your blood count improves really soon,and you will be able to get out of there.Will your partner be home soon Viv? I hope that you won't be by yourself when you get home.Try and keep your chin up,and try and look at this as a downhill run on that roller coaster.Sending you a big cyber hug.xoxo. Robyn

This is not how I planned it! | BCNA Online Network

19 Replies

TheresaW
Member
12 years ago
Sorry to read what you have been going through. I also was discharged from hospital yesterday after contracting an infection from my drain (which I still have in 2 weeks tomorrow) so I know how you feel being In there for 4 days & over the long weekend. I haven't started chemo yet so I'm hoping my bout with infections has been dealt with the surgery, that's my wishful thinking anyway. I hope you start feeling better soon. My thoughts are with you Theresa
jenpen
Member
12 years ago
Hi Viv

So glad you are home again & hopefully getting used to your new hairstyle...my hair has been gone since Nov & I still forget sometimes until I see my reflection in the mirror or my windows!

I had a few hospital stays for neutropenia/infection after my 2nd chemo. After that was prescribed Neulasta injection (immunity booster) to take 24 hours after each chemo & this seemed to work great (had my last chemo 13 days ago).

Your oncologist may now do the same for you....so don't worry...the dreaded high temp probably won't happen again! Good luck...Jenny x
Robyn_W
Member
12 years ago
I am pleased you are home,and coping with the nude nut!!! Put a little hat on if it gets too much.My hair is now growing again,and I haven't worn a hat for a couple of weeks.It looks bald to everyone else,but to me its hair!!Take care.Robynxoxo
mum2jj
Member
12 years ago
So happy for you. I had a wonderful hairdresser also who came to my house and shaved my head on her day off. She was as nervous as me!! However since then she does it often for her clients with cancer. You will get used to your baldness. It's really cool in summer. I always slept with a little cotton cap at night as my head got cold in bed. The cancer council sent me them one time after I called them. They weren't that attractive, but great to sleep in. Stay well and rest up. Hugs. Paula x
mum2jj
Member
12 years ago
So happy for you. I had a wonderful hairdresser also who came to my house and shaved my head on her day off. She was as nervous as me!! However since then she does it often for her clients with cancer. You will get used to your baldness. It's really cool in summer. I always slept with a little cotton cap at night as my head got cold in bed. The cancer council sent me them one time after I called them. They weren't that attractive, but great to sleep in. Stay well and rest up. Hugs. Paula x
Viv_C
Member
12 years ago
Hi to my lovely pink sisters, thank you for you support and cyber hugs, they meant a lot. I managed to get home and get my head shaved yesterday, so am now much happier. I decided that it was just going to happen, and it did, thanks to the superb efforts of my nurse who managed to fast track all of the normally glacial weekend hospital procedures for blood testing, analysis, reporting, and discharge, as my neutrophil counts finally reached a safe level. Even more thanks to my wonderful hairdresser Nikki (Rubi Hair Windsor) who stayed back at closing time to shave me, and had said when I phoned that if I couldn't make it before the salon closed, she would pack her clippers and do a home visit. She has only cut my long hair a couple of times before, but gave me a beautiful pre-chemo short bob and now this, and she even made it fun. Bless her! So now I am relaxing at home, getting used to this strange bald head I see in the mirror and feeling I can face life again. Thanks again for your support Viv xxxxx
joeybutts
Member
12 years ago
I know I am new here and only posted a couple of times but every morning I look at the posts on this discussion board and have been wondering how things were going with you.

Sorry to hear that you are in hospital, but I am hoping that there is a bit of improvement for you since your last post...

I am sending cyber hugs too...
TonyaM
Member
12 years ago
I was right where you are now, 3 and a half years ago.I was in isolation for 4 days with my hair just starting to fall out.I had an iv cannula in the bend of my right arm so had to keep it straight and use my left hand for everything.My blood was collected from my ankle each morning -ouch.But at least my husband was visiting me.You poor love,bad timing to land in hospital on a long weekend and your husband away also.The bc ride is full of surprises isn't it.Well your pink sisters are here feeling sorry for you.I'm wearing a virtual white gown and coming into your room to give you a hug! love,Tonya xx