Hi

Hi Deb1E,

I think we may have talked before?  I certainly remember your username.  So sorry to hear your news and it certainly turns your world view upside down and reorders your priorities!

Can I suggest that you talk to the Macmillan helpline on 0808 808 00 00 . In addition to emotional support they can give you should ask to speak to a financial advisor.  They can take you through everything including benefits, life insurance, pensions etc and are excellent.  You should be eligible for a benefit called PIP (person independence payments) as these are not means tested.  You should be able to get a form DS1500 completed which fast tracks your claim without the need for an assessment but the financial advisor can explain how you go about that.

I found dealing with my family was key for me but I was fortunate that generally they went along with what I wanted.

I look forward to talking to you again soon.

Love and hugs,

Gragon x

Hi Deb1E  That's great you filled out your profile page, it does help when replying to a post here as I'm sure you will find out yourself!

Im sure your son will be able to pick up his comedy career once this lockdown is over and it's good to have someone around who can make you laugh.

You said on your Profile page about chemo, then a scan, then possibly more chemo then another scan! Then you said you didn't know what after thatI know it is difficult but don't try to get too far ahead of yourself. Take one day at a time and enjoy it. Just take one step at a time and you'll get there!  I too have three grandchildren, I hope like mine, they live close by so that after this virus has gone, you can enjoy their company!  I have heard today is a present as well and it certainly is! Yes please stay in touch! Take Care 

Not at all selfish to think your world caved in. We have all been through it. I was given 5 months because they did not know what they could do about it. Finally I found an international forum dedicated to my type of cancer that gave me great advice and was able to push for experimental treatment.

Friends and family do rally round bless them, but I too found they 'didn't quite get it'. It took a while for me to realise that this was something they never really would.

It's Forums like this that one can open up to and share deep rooted fears and anguish....and of course lots of help and encouragement! 

Stay positive and stay safe in these challenging times. Remember....you are not alone. Lots of love to you and yours. xxxx

Hi all

I have been told this weekend I have bloods (am) and consent forms (pm) Tuesday and first of 3 cycles of chemo (carbo/taxol) on Thursday at the private hospital (designated the "clean hospital" for this area").  Consultant says this will be a lot more potent and have more side effects than the chemo tabs I had last year so anxious actually more than anxious.

Has anyone had this cocktail (or either of them) - is there anything I can do to make life a bit easier - food/drink/snacks during treatment or what best to eat after etc. I have to rely on my husband to go shopping so need to give him some idea of what I want/need.

I am not allowed to take anybody with me because of COVID so will be a long 5-6 hours.

Sorry to bombard you all w questions and happy treatment is starting but ... well you know.

On a happier note I hope you are all enjoying the sunshine today.  Oncologist said I could go out for a walk before I start treatment if I got up and out early while nobody is about (had the shielding letters) so have been getting up at 5.45 to go out for a walk before anybody is about.  It is hard work getting up so early but I do feel better for it when I collapse on the sofa after - only 3 days left to do that so hoping for the good weather to carry on.

Love to all  xx

Hi Deb1E

yes, I’ve had this cocktail. It was six years ago, right after a hysterectomy. 

I’ll start with the day. It was long and started with basic observations including weight and blood pressure. I had a cannula placed and then treatment started. I would be given some medications to help with side effects as tablets, and some iV. They gave me IV piriton which always made me go to sleep. Then the chemo went in over several hours before final flushes and removing the cannula. 

I always packed a chemo bag with things to do such as reading or knitting. I took food, both a sandwich lunch and treats for the day. I found a small, soft blanket was nice as it gets cold sitting still. A portable charger, charging cable and ear phones were also essentials. There’s no way I could have got myself home - I went by public transport to central London but needed a companion and a lift from the station. 

As for side effects, the caveat is always that everyone is an individual, but I did find a pattern emerged. I’d be bouncing around in a steroid buzz for 48 hours with both good and bad consequences. The good was lots of energy to get things done. The bad was mood swings and insomnia. 

Then days 3-5 I’d gradually feel lower and lower, with aching limbs and crushing fatigue. This would bottom out around day 7 and I’d gradually start to improve. I always had constipation from the steroids and this could get real bad. I was given senna to take but looking back I think it would have been helped by taking movicol too. The anti emetics worked for me and I was never sick. I always took a daily walk no matter how short. Sometimes it was only 100 metres on the really low days. It helped me mentally but also helped me track my recovery. 

Three weeks later, it would all start again...blood tests the day before, consultation with doctor to report side effects and back to the chemo unit the next day. 

The hair loss began after about two weeks. It was getting everywhere so I shaved it off at that point and started wearing head scarves. I had a wig but I couldn’t get on with it. Over the weeks, I developed some tingling and numbness in my feet. That took a couple of years to resolve. 

The treatment was effective and despite having a solid tumour of 2cm that they couldn’t remove with the surgery, I was “no evidence of disease” by the end of it. 

I hope this is helpful. Your walks with the dawn chorus sound lovely.  

Lots of love xxx

Hi Daloni

Thanks for once again for the good tips and advice.  I find not knowing scarier than the reality so thank you and I am pleased to hear that the treatment got rid of the tumour 6 years ago makes me  more optimistic that I have a fighting chance of kicking my "sell by" date further down the line.  

I hope you slept well and are feeling better today.  The sun is shining here and the sky is blue so looks like another lovely day.  I hope the sun is also shining where you are and you get the chance to get out and enjoy it.  

I am typing this for the 3rd time (having managed to delete rather than post!) probably because I have been up since 4am - I gave up on sleep as my brain obviously subconsciously had things on its mind and it wasn't sleep.  On the plus side it means I have started shredding old work/personal paperwork (which I should have done before now but kept putting off), put on the washing, watched some B film about a prehistoric shark fighting a prehistoric octopus for supremacy off the coast of USA and managed a walk but will probably be in bed by lunchtime!!

I hope you have a good day.

Lots of love and virtual hugs xxxx

Third time lucky here goes ...

Hi deb1e, welcome to the group! I hope the chemo goes well, I had 6 cycles like daloni as first line treatment - it was exactly as she describes but the only extra thing to mention is it can knock your bloods down, I had very low white blood cells from it. I expect your are shielding so that will help but just watch for infections other than corona, take your temperature each day and be careful about what you eat - no shellfish, takeaways etc.  I also had very low red blood cells from it so needed a couple of blood transfusions towards the end but not everyone has this.

best of luck with the treatment, I hope it works, it is doable, like daloni I walked every day and that helped.

love heather x

Hi Heather

Thank you, I am pleased I joined.   As I said in an earlier post I was a bit hesitant about joining the group but the members have been far more positive upbeat and supportive than my oncologist who was quite pessimistic and made me quite depressed so now determined to try and prove her wrong and push the inevitable back as far as I can. 

I am shielding (got THE letter) but the oncologist said I could go out for a walk during the lock down, if I got up early to avoid people which is what I have been doing - can I carry on with that during treatment? 

I have bloods and paperwork tomorrow and start on Thursday at a local private hospital (because of corona).  I will have a different team at the Spire so will see what they say but just want to get on with it so I at least feel like I am doing something - the waiting is the worst. 

I have been offered 3 cycles to start with, with a possibility of a further 3 depending on results but will push for the full 6 whatever.  

One question I have seen people refer to cancer markers - what are they?

Have a good day

Debbie xx

Hmmm not sure about shielding, chemo AND walking, I think definitely a check with your doc on that one.  I’m supposed to be shielding and am on a trial drug that affects my immune system but I’m a bit bl**dy minded plus terminal, so I do go out for fresh air, while being very very careful.

For ovarian, they check a specific marker in your blood called CA125 but it’s a bit hit and miss for some people, I’m not sure whether there are markers for all cancers though.  How will they know chemo works, with a scan after 3 chemos? Another question for the doc x

Hi

Will check but probably already know the answer about going out.

The plan is 3 x 3 weekly cycles and then a scan and if signs of improvement/no deterioration then will get another 3 cycles.  If neither then not sure if they have a plan.xx