Setback

[ginkgo]

I managed to get the palliative chemo treatment in the hope I would be one of the lucky ones, but it wasn't to be. I had 4 sessions, the first with pemetrexed and carboplatin. but the following three I only got carboplatin, due to my kidneys giving a GFR reading of 37. The last chemo was 25 Nov and then I had a contrast CT scan on the 28th.

On 10th Dec my breathing suddenly got a lot worse and I became unable to walk more than a few feet without struggling to catch my breath. I was advised to go to Acute Oncology and they tried really hard to find out the problem. I had different blood tests, an xray and another CT scan to check for blood clots which fortunately proved negative and my lung had not collapsed again (as I feared), so it was assumed I had an infection and I received antibiotics which have helped a little bit. I saw my chemo Consultant on 19th Dec and she was alarmed at my low blood oxygen. My tumour has grown but only by a couple of mm, and one particular lymph node has grown by 5mm but my pleural effusion isn't any worse and no new tumours. It has been assumed that the combined effects of my symptoms have caused this new problem. The consultant offered to have me admitted to hospital but I declined, quite strongly. I know we shouldn't believe everything we read in the papers but I do not want to be stuck in hospital over Xmas. I knew I was struggling to keep oxygen levels up so I have a 15 litre canister of oxygen that keeps me going and gives reassurance that I have a 'backstop'. I'll be much happier and more relaxed at home.

I get my oxygen assessment tomorrow, so I'm hopeful my oxygen support will be sorted before the Christmas holidays, but I'll manage whatever happens. I've ordered another canister of oxygen, just to play safe. The consultant has also arranged for the district nurse and Macmillan Nurses to contact me, so I don't feel abandoned as I have at times in the past.

That's all from me. I hope everyone has a great Christmas and a Happy New Year.

[mishamilo53]

oh darling , that must feel so scary for you , I’m so sorry that’s happening to you right now …. I can see why you wanted to go home and I hope that you don’t feel abandoned over Christmas by the system …. Sending much love , Elly x

[ginkgo in reply to mishamilo53]

Thanks but I'm fine. I was extremely ill this time last year but had a miraculous improvement in the spring and enjoyed my summer. I feel blessed to have had this extra time and the real bonus ... to feel well enough to enjoy it. I worry about my husband, but I've done all I can to prepare things for him. It will never be enough.

[mishamilo53 in reply to ginkgo]

I wish I had your bravery , I struggle so much and admire and respect anyone dealing with what you’re dealing with , with such tenacity x

[Babydolltina]

Good Morning Ginkgo. I'm sorry to read about your hiccups with your treatment. Has your Oncologist thought about giving you Carboplatin and Etopiside. It shrunk my late wife's tumor drastically and she was only Palliative care, but we managed to get 9 months more than was first diagnosed. It's a hard Chemo treatment but worked. I hope you can manage to have the best Christmas that you can, and I hope the nurses can make you more comfortable.

God Bless and Keep the fight up.

John

[ginkgo in reply to Babydolltina]

Thanks for the suggestion but I won't be given any type of chemo as my kidneys aren't working well enough. I plan to be around for quite a while yet and hoping I can get the supplementary oxygen before Christmas so I can move around and cook Christmas dinner. At the moment I avoid any and all movement as far as possible, as it depletes my oxygen level too much. At least I am not in pain so that's a bonus.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Ginkgo

Sorry to hear you have had quite a time of it and it is good you are receiving more support at home, with both the oxygen and district nurses.

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

We hope you manage to have a happy and safe Christmas and if you would like to discuss anything you can call our nurse helpline on 0800 358 7200, we finish on the 23rd December and the helpline is open for one day on the 29th December and return on the 3rd January. Alternatively you can email ask the nurse at [e-mail] and we will endeavor to get back to you as soon as we can.

Kind regards

The Roy Castle Support Team

[Gymbuddie]

hi Gingko. My thoughts are with you and your family at this worrying time. Keep positive and take care.

[sally70]

When it looks like you have run out of options it seems all you can do is try to accept it but NO. You have fought this so many times. Now is the time to fight again. To not focus on all the negatives in your latest report but look again at the positives. Take all the help you can get, swear at the cancer and keep putting one foot in front of the other. Try to smile over Christmas, sorry about all the clichés. But like you I seem to have run out of options and its taking me some time to get back into the fight. To be honest I'm not sure this time of the year helps. I wish you all the best, Love Liz

[ginkgo]

Thanks sally & gymbuddie, and everyone else. Your concern is very heart warming. I may be down but I am not out. When I was really ill (this time last year) I was literally sent home to die after receiving the palliative radiotherapy. No treatment offered, no support offered, no follow ups, no future monitoring, nothing! It has all been so different this time around. I have already received a date for a telephone appointment with the chemo consultant, and she has already arranged oxygen support which, YAY and whoopee doo, is arriving later today. That means I will actually be able to move around the house and go out if I want to without gasping for breath. I adore my dogs and my garden so (weather permitting) I'll be out playing with the big babies and spoiling myself rotten. Cooking will be a bit dodgy due to the need for the highly inflammable oxygen but everything else should be so much easier and I will even be able to go places. I have still to hear from the District Nurse and Macmillan but my biggest worry was my difficulty in breathing. The rest can wait, if needs be. Everyone deserves to have some Christmas joy. I wish I could wave a magic wand for you Liz, and everyone else, but sadly we get whatever nature throws at us. As you say, we can give up or make the most of it, and that's what I intend to do. Sending you my love.

[Gymbuddie]

Hi Gingko. Your enthusiasm is very encouraging. I admire that. I am sure you are gong to make the most of Xmas. I wish you a fun filled xmas. Take care.

[mishamilo53]

Hello gingko , I’ve been thinking about you over Christmas … hope you managed to find some joy in it and your oxygen helped you to achieve it x