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Hi all, looking forward to joining this group. I was diagnosed with womb cancer, had hysterectomy, lymph nodes clear but microscopic cells in the perineal wash. I started chemo today however I had a reaction so they had to stop it. I have to return tomorrow and try again at a slower pace. Has anyone experienced this. I’m so scared it will happen again. X
I’m so pleased to see that you found your way to the womb cancer group. I read your post in new to the site earlier today and saw that you’d had the signpost to this amazing corner of the community. I like to think it’s a bit like the kitchen. The kettle is always on, there’s always a cuppa to be had, there is a biscuit if you want one, and definitely someone to talk to. So sit down and see if you can relax a little bit.
Starting chemotherapy for the first time can be really frightening, I know, I’ve done it. I can really only imagine how terrifying it must be to have a reaction like you did. What happened? Did you have an allergic response? I’ve been lucky enough not to have had allergic reactions to chemo although I did to immunotherapy. It wasn’t fun.
Perhaps the thing to focus on is that you were kept safe. The nurses picked up the reaction, they stopped the infusion, and you’re to go back tomorrow with more safety measures in place. I think that’s reassuring.
If I was round your house with you now, I’d have already helped you to pack a bag to take with you tomorrow. I’d have put in some nice lunch, maybe some fancy sandwiches and a bit of fruit, a bit of chocolate and a packet of crisps. A flask of tea, maybe? What’s the tea situation at the unit? I’d make sure you had a book and your glasses if you need them, Phone cables and phone charger, and a lap blanket. Then I’d have settled down in bed with you had a good chat and made sure you fall asleep.
I do hope you have someone to do that for you at home right now. If you haven’t, I really hope you’re able to do it for yourself. Be your own best friend right now.
I know you’re scared. And I know you’ve come online, and be brave enough to reach out with the help that might be available. I hope you found it. That makes me think that you are brave and your resource full and you’ve got this. Tomorrow is another day and he will go to the unit you’ll get your chemo you come home and it will all be over. Until next time that is.
I know you’re scared. But scared as you are, you’ve come online and reached out for help. That makes me think that you are brave and you are resourceful and you’ve got this.
I hope the other wonderful women in this group or chime in soon with their words of wisdom. Actually no I don’t. I hope they are all sound asleep. It’s unreasonable o’clock. But you know what I mean
All the best for a smooth run tomorrow
What is a community champ?
Just popping in to say hello and welcome. daloni has given you some fantastic advice. I agree with her - chemo is scary. I’ve had chemo too and I can remember how frightened I was. I didn’t have a reaction at the point of having the infusions but I did have an allergic reaction afterwards me the form of a nasty, lumpy rash. A quick call to the oncall oncologist and strong antihistamines resolved the problem. I understand how hard it is but I totally agree with trying to focus on how well you were looked after yesterday. The team know about it and they’ll be doing everything they can to get you through this as safely as possible. Definitely agree about taking a good book, nice lunch etc. Maybe add in some music too - it’s a good time to reconnect with some of your favourite songs. Sending you lots of good wishes and a gentle hug. Please let us know how you get on x
I can't imagine anyone being glad to join this group!!! Although there are usually lots of tips and someone who's been there before!
I haven't had chemo, but have read on here about a couple of people having reactions. I think they just had it put in slowly. My daughter had chemo for breast cancer and I know how careful they were with her. She caught a cold at one point, and they whisked her into hospital for a couple of days. She was very well looked after. Just make sure you tell them about any problems.
Good luck XXXXXX
I'm popping in too to say welcome to the group. I haven't had chemotherapy but I know about the anxiety that goes along with this whole rollercoaster ride. Fairycake and Daloni have given you good advice but you will be in my thoughts and prayers today and I hope the experience will be better for you. God bless love lamb.xx
Hi JR1974, sorry for the slow response. Yes I have had anaphylactic shock to 2 of my chemos I'm afraid. The first time they continued with just the Carbo platin and the second time the same. They were really good, the first time was a terrible experience as I really wasn't sure what to expect, but they sorted me so quickly. The 2nd time I knew straight away what was going on so they stopped it all very quickly, sent me home and took my in the next day. They wouldn't try either again because the reaction was so dramatic, always been a bit of a drama queen I am sure that they will have looked after you today and will be monitoring you closely. I'm so sorry that you have had to join us, but hope that we can all be supportive of you on this journey.
Take care, and remember to rest and drink lots of fluid.
Hi JR1974, such a scary time going into the unknown. My first session I had a reaction to chemo the had to put it in the other arm which seemed to be better. 2nd session I wad absolutely fine sailed through it, 3rd time another reaction so what they ended up doing was slowing the rate at what it was going in at which did help. I'm so they will monitor you closely today. And don't be afraid to let them know of any changes x
Thank u for your reply, they ended up putting it in at a slower rate and I managed to take it that way. I’m struggling with these side effects. The worst is achy legs and muscle spasms. It’s awful. Xx
My daughter was worse when she came off the steroids, a couple of days after the chemo went in.The steroids mask the after effects. She also found she was best lying in bed for the first week. She felt very sick, otherwise, even with anti sickness pills. By week 2 she was feeling better and pottering around. By week 3 she was normal again, but then it started all over again! The first round set a pattern for the rest of the sessions, so she knew roughly what to expect.
I would ask about your aches. They might suggest something. Don't suffer in silence! xxxxxx
I am so glad that you are coping with it at a slower rate. I had the leg pain too - I used to really struggle the weekend after the chemo. Although it does build up over time, I actually found that I coped better mentally with the later ones because I knew what to expect. Ask for painkillers! I ended up in A&E after my first cycle but later I was given both codeine and oramorph (they don't take way the pain but do make you sleepy)
Thank you for all the responses, Endo3 I’ve got my 2nd chemo on Friday. I’m so worried about the bone pain. I was in hospital last weekend with a high temp, they have reduced the paclitaxol for my next one. I tried the cold cap but my hair is coming out in handfuls so really not sure what to do. Did you lose your hair or manage to hang on to it? X
I spoke to someone who only had carboplatin and it appears that it is pacllitaxol that causes the leg pain, so a reduced dose should reduce the pain. I have to admit that the pain was hell a few days after each cycle but I had codeine and oramorph to help. Personally I found that a dose of oramorph every hour before bedtime (3 doses) and a large glass of wine meant that I could sleep for a bit. Heat packs also helped - I had some that were like little electric blankets. One day we even arranged that I was near a socket in a restaurant so that I could use it. It's brutal, no question, but there is an end to it.
I was told that I had no chance of keeping my hair and wasn't even offered a cold cap. Why put yourself through it? When mine started coming out in handfuls, I got my husband to use a trimmer and then shaved my head to just get it over with. It was a bit of a shock, but I got used to it. It probably helped that I had a friend who had lost her hair and, as the wig felt scratchy when we tried it on, we made her go out for lunch with a bald head. Nobody bothered and it gave her more confidence. I did buy chemo hats and wore those. Everyone knows then what you are going through. They glance and then don't bother or may be a little more pleasant (nobody made a big fuss, which I would have hated).
You will find that there is a pattern to how your body reacts (I had constipation for a few days after, leg pain that was at its worst days 2-5 and diarrhoea days 10-12). Knowing your own pattern helps mentally. It also meant that I could tell friends when I could see them. They would phone and I would say that I won't be well enough until Wednesday this week, but then I will be fine until the next cycle....
I had to go in hospital with a high temperature at one stage (we went away for a few days between chemo and radiotherapy so I missed out on a nice hotel). It was put down to a virus in the end as all tests came back clear.
Good luck with the next cycle. It's hard but you can do it. The pain will pass (but do get help with that!) and your hair will grow back (mine is nicer now than it was before) so it's all just temporary.
To rephrase a well known saying,chemo is a bitch, but then you live xx
Hello JR1974 I tried the cold cap too. It didn’t work for me and I lost all my hair. In fact I lost all my body hair. The upside is you probably won’t have to shave your legs for quite a while. The downside can be in dealing with the hair loss. Our hair is part of our identity and it’s a shock seeing yourself without it. When mine started coming out in big handfuls the very kind nurse who was fitting the cap gently explained that it because I’d list so much already his experience told him it wasn’t likely to be a success for me. He asked me to think seriously about what I wanted to do and left me some space. I thought he’d left me alone but he’d actually gone to rally support and sent a lovely female nurse to sit with me whilst I cried and made my decision. She introduced me to another patient opposite who disclosed she was on her 2nd time round with chemo and had again opted fir a wig. I honestly hadn’t noticed. She reminded me that the hair loss would be temporary and it would grow back. She was right but still it was hard to hear.
Some ladies cope well and embrace the new look. I know people who rock the headscarves and statement jewellery. Others, like me, don’t. Big jewellery isn’t my thing normally so why would it be during chemo?. I did use scarves, but I also had a wig. The first wig was ok and part funded by the nhs. The second one was much better, with a lace front which gave a natural looking parting. One of the nurses was almost convinced it was my own hair till she remembered she’d last seen me dark (my wig was much lighter). I preferred using my wig because in the run up to Christmas I’d noticed that delivery people met my eyes and smiled when I wore it. If I didn’t, neither did they. My husband said I was imagining it until he noticed it too. I also used make up more regularly which gave me a confidence boost. I’ll be honest, I never let my adult daughters or their partners see me without my wig. I didn’t want them to feel even more upset and worried than they already were and I just wanted to enjoy their visits(they all live away) when they came over.
There are no rights or wrongs in dealing with hair loss. We each find a way we feel comfortable with. If it helps, I’m 3yrs on from the end of treatment and my hair grew back well. It’s greyer and not as wavy (initially when it grew back it was like poodle curls) It’s not quite as thick otherwise it’s ok. You will get through this. Be kind and gentle to yourself. Gentle hugs coming your way x
Thank you so much for your very kind reply fairycake, the stress I’m feeling with my hair coming out in clumps is unbelievable. I’m having my 2nd chemo on Friday. I feel like I have made the decision to not have the cold cap again as I feel it hasn’t worked for me. I had really thick hair and now it’s really thin with the amount I’ve lost. I have ordered a scarf and I’m ringing to arrange a wig tomorrow. Due to not being able to see a hairdresser at the moment is making it worse as I have no one able to cut my hair for me. I’m really worried as my 9 year old keeps saying he doesn’t want all my hair to fall out, I keep telling him I will still be me and it will grow back. It’s heartbreaking. I hope you don’t mind me asking, was the cancer in your womb? I have hysterectomy and they found microscopic cells in the wash this is why I’m having chemo followed my radiotherapy. I’m also scared it won’t kill the cells. I think my mind is just all over the place at the moment. I really hope you don’t mind me asking what your situation was. Xx
Hello JR1974 I don’t mind you asking questions at all. Re your child’s worries about your hair I think all you can do is be honest and explain things in an age appropriate way.
Yes the cancer was in my womb. The investigstions showed o had a rarer, aggressive type of cancer called serous endometrial adenocarcinoma. The gynaecologist oncologist thought it was just in a polyp and all the scans looked good. He removed my womb, cervix, tubes, ovaries and omentum plus some lymph nodes for sampling. The post op histology showed the cancer was contained in a polyp so the hadn’t spread but it had somehow jumped into a single pesky pelvic lymph node and consequently I was staged 3c1. The gynae-onc was as shocked as I was. I was strongly advised to have chemo to mop up any stray cells and to (hopefully) prevent any recurrence. I also had 25 sessions of external radiotherapy. I’m 3 yrs on from the end of treatment and so far so good. I’ve made adjustments in that time, re-evaluates some things, taken early retirement, I do some voluntary work at my local church where I help lead services etc and generally take life at a different pace. Life is good. I have so much to be grateful for - the pandemic has given me chance to realise that all over again.
Enough, I digress. I hope that helps a little. Take care xx
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