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Hello every one.
On 19th March l learnt l had serous womb cancer. Fought to get a Hysterectomy (23/04/20) as the hospital were refusing to operate because Covid patients being prioritsed. Fortunately they agreed to do the op after my MP got involved. Which makes me feel very lucky but awful for the people who haven't been able to get the treatment they need.
Because it is a grade 3 cancer I am about to embark on a summer of adjunct therapy, that is 6x 3 week cycles of Carbo/paxil followed by 4 sessions of twice weekly brachytherapy.
I understand everybodies experienced of chemo/radiotherapy is different. l heard so many stories which have varied from being virtually unscathed to the worst thing ever. Do peoples experience depend on their particular cancer and its stage. Or it it down to the individual?
l've been told l will lose my hair which currently is quite long, and l wouldnt want a wig even if l could have one. But the advice l would welcome is this;
At what point is it a good idea to shave one's head
What to expect whilst actually recieving the chemotherapy, how to pass the time in the hospital.
Any helpful advice regarding things to get stocked up on to help. l have 11 days to prepare.
Any suggestions will be gratefully recieved
Hi. I too was diagnosed with stage 1A grade 3 serous womb cancer, I had a hysterectomy and have just had my third carbo/taxol chemo last Thursday.
My hair started to fall out exactly 14 days after my first chemo treatment. I waited a few more days until it was coming out really fast before I shaved it off. I have a wig but don't like it on me. I am wearing a baseball cap, or turban hat.
Chemo day at my hospital is fine, I have a cannula in my hand and they tell me what they are giving me through it each time. In my experience the time goes quite quickly, but I take my iPad to watch tv with my headphones, lunch and magazines. I take lots of bottles of water too. I also take my hand sanitiser and wipes.
I have found it a good idea to keep a diary of each chemo week and how I feel. This last chemo session I am sorry to say I have felt awful. Tired, achey, joints hurting, nauseous, but I am hoping that like the last two cycles these symptoms only last a few days. Fingers crossed.
Please let me know if I can help with anything else. Good luck to us both x
Thank you so much for your reply and it really helped me to read how your cancer and treatment is the same as mine, so l think our experiences will be comparable. l made a mistake when l wrote the name of the drug. lt is carbo/taxol, I've just checked.
l think your idea sbout keeping a log is brilliant. That is something positive to do. From the moment l was told l had cancer at the same time the country was locked down, l have felt my life has been completely beyond my control. l can't even control our weekly shop.
Have you found your appetite has changed with treatment. Since coming out of hospital, where l ate practically nothing (not like me!) l have found no pleasure in the things l normally enjoy and have craved celery and onions and lots of vegetables. l'll be interested to see how that develops through chemo.
l can't say I'm looking forward to it, but l can't wait to get it all behind me. l had talked myself out of radiotherapy, but the oncologists have talked me back into it. Will you be having any radiotherapy?
How are you coping with lockdown?
Thank you for your good wishes. Yes good luck to us both x
I am struggling to eat at the moment, after chemo, definitely lost my appetite.
I am supposed to be having brachytherapy, which is internal radiotherapy. I will see about that when I get there.
Treatment seems to vary where you are in the country, some people with grade 3 just have brachytherapy. Who knows?
I am also struggling with not going out and being 'normal', before all of this I was very active, with work and the gym, right now I just need to get through as many chemo's as possible and then need to start to build my body up again, which I think is going to take some time.
Take care x
I have stage 3c ovarian cancer and have just had a total abdominal hysterectomy after 4 rounds of carbo/taxol and Avastin. Surgery should have been after 3 rounds but postponed due to covid situation. My chemo side effects have not been too bad luckily, just really achey muscles and joints in my tummy, legs and feet from day 3 to day 6/7 each time which made it hard to sleep. They give you steroids to take the day before the chemo and for two days after which prevented nausea for me (I found the buzz they give quite entertaining!). I did find that my taste buds were a bit up the creek for a few days after chemo but did recover each time.
I was diagnosed in January before the lockdown and I managed to get myself fitted with a very nice wig - I did push the boat out as my daughter was due to get married in August and I knew I wouldn’t have hair by then. Then lockdown happened and I have not had the opportunity to wear the wig out anywhere (and the wedding has been postponed until next year)! I ordered some stretchy hat/scarf combination things from Amazon in various colours which I wear most of the time - very easy and comfy. Like Goldenretriever, my hair started to fall out 14 days after the chemo and I got husband to shave it when it reached the Rab C Nesbit stage, just some long stringy bits over the top - really not an attractive look! It looked so much better afterwards that I was really happy to see it go.
I know that I have been luckier than many in my experience of chemo so far and I don’t know how I will be for the last two rounds after having a break. The most important thing I found was to keep hydrated. Drink water as much as humanly possible!
Best wishes, Nell xxx
Forgive me for not replying sooner but thank you for your advice. You have a wonderful positive attitude to all this. lt puts me to shame really. People tell me l'm positive, but the truth is l'm positively pissed off about it all (and the lockdown and the lack of distractions because of it. Nevermind the worry of loved ones getting it, or me for that matter)
Two days ago I decided to ask my friends to sponsor me having my head shaved to raise a few bob for Macmillan, the pledges are very generous, watch this space.......
From the moment l thought about it and texted them all to ask for sponsorship l felt a lot better about this process, for the 1st time since my diagnosis l felt like l'd got a bit of control over something.
Take care xx
Please don’t beat yourself up for lack of positivity - we all react in our own way to things and one of the worst things is to have people tell you how you should be feeling! You are right, it’s the lack of control that is so difficult to cope with and I found that taking things one step at a time helped me: that bit’s done, tick it off. I did lose the plot temporarily when I was told that due to covid my planned surgery after 3 chemos was cancelled and that it would have to wait until after having all 6. I’m sure that oncologists musts be used to tears but mine seemed quite alarmed at my reaction! Anyway, I pulled myself together and got behind plan B and happily was able to have the surgery after the 4th chemo.
I’ve never really been ill before so I do keep thinking why NOW??? We were hoping for a much better year this year as we lost both my mum and father in law last summer but instead everything just got weird!
Best wishes, Nell. Xx
God bless you I was 43 when diagnosed I'm 50 now and believe me this will pass and you can lead a normal life Trudi xxx
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