As some of you will know I finished 5/6 treatments on the Rotterdam Regime which ended mid May. I managed most of a third round of maintenance Etoposide tablets in June/ July before making decision to stop them myself as I was beginning to feel very rough.
Scan results mid June showed much reduced nodules of disease and CA 125 down to 100's ( from 1000's).
However at this point I began to have much reduced appetite , daily diarrhoea and breathlessness.
I was given a one month appointment but after a week knew things were going downhill. I tried to get another earlier appointment and speak to CNS. Was told I should wait and no response from CNS....
so by the time I got to my appointment on 7 th August - and by Sod's law our precious window of family visit of my daughter, husband and two young grandchildren arriving that week from Vancouver - I was feeling pretty low.
Well guess what? From a chest X-ray they decided to admit me immediately and do a chest drain the next day. Two and a half literally bloody litres later I could breathe but the diarrhoea was getting worse. Tested to find I had the dreaded C. Difficile infection and bumped into a horrid side room on the admissions Ward until upgraded massively to a lovely room on the top floor.
Further X-rays both before and after chest drain removal ( which overall has been a much more difficult procedure to tolerate compared to first time I had it done 15 months ago ) showed a partially collapsed lung with air pockets ( hydropneumothorax). As I appeared 'clinically well' they let me out for a half day with the family before they all had to start their return journey the next day. I can't tell how sad and depressing that week was - but have beautiful memory of my 5 1/2 year old grandson coming to collect me with his mum bringing his invented Lego gun to distract the doctors and break me free.
Was told to return Monday for a CT scan whereupon got whisked in again as lung much worse. At last given special antibiotics to clear c. diff infection but still struggling with an out of control weeing bum . Eventually set free again yesterday with currently no further action but referral to another hospital with a specialist lung clinic next week and directive to ring 999 if breathing becomes compromised and say " Take me to Wythenshawe!"....
I think they are amazed I am doing as well as I am. Just before I left I asked what else the scan showed and sad to say disease has returned already....
All to be discussed on next clinic appointment in two weeks by which time hopefully my other issues have begun to be resolved. I have lost a lot of weight and have arranged to see a private nutritionist as despite me pleading to see someone in hostical nobody came... my body has no reserves at the moment but at least I am moving and breathing!
Just to top it all, two days ago my hair decided suddenly to take fright and flight just when I thought I had done really well to hang onto it over this last treatment...
Sorry it's an epic post but it so helps to write it all down and share... all the best to you all . I know so many of us are struggling along different paths and routes, up and down...
Janet 🌈🌈🌈 💞
PS Forgot to tell you the most exciting news in all this rubbish is our son's wife is expecting their first baby... next March, so prop me up with your finest chemo treatments till then as this is definitely an event to be there for xx
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Oh Janet you poor poor thing!!!! What a ghastly time you’ve had...but I am so glad the baby news is keeping your spirits up. I do hope that you have a bit of respite now xxxx
So sorry to hear that you've been through such a horrible time. I smiled to think of your grandson coming to bust you out of hospital with his lego gun. That must have been a funny interlude amongst all the serious stuff. Brilliant news about the new baby too. Wishing you all the very best with the nutritionists. I hope they are helpful. Sending you a big virtual cwtch xxxx
I only recently learned what cwtch means through Welsh dramas Hidden and KeepingFaith, both brilliant btw.... it is my favourite word now 😍.
Getting some probiotics for starters. Meanwhile got a big bottle of oxycodene from my GP this morning as antibiotics not kicked in yet and tummy pain was excruciating last night..
Glad you like it. It is so much more than a cuddle . I loved those two series too. Apparently they are filming a new keeping faith atm. Did you know that the two main characters are husband and wife in real life too? That explains the chemistry I suppose. I hope you are feeling a bit better this evening and that the meds have started working. Sending another big cwtch. Sian xx
Oh Janet, I feel so cross on your behalf that you weren’t given an earlier appointment. We have a ‘chemo helpline’ who are very helpful...
You must’ve felt so poorly...you need LOTS of building up. Can you get your GP to prescribe ‘Fortijuice’? It has all sorts of vitamins & minerals in it, in the right combination. Water is so important too, just sips, or jelly or crushed ice..
Sending a big hug up to Lancs from Glos 💚💛🧡💜 Linda xx
Have tried the Fortijuice before and can't get on with it, appetite so fussy at the moment .. but found I can manage kefir drinks, so that's for starters. Found help now. I live in Cheshire ( though it's more south Manchester) but brother and sister in law live in Cheltenham so know Glos well...
So are you! If it's not drain for tummy it's drain for lung.
Always something going on , at times feels it has taken over your life...desperately trying to climb back to a point at which it doesn't dominate everything
Janet, I'm so sorry it's been such a tough run since I saw you in July. I agree with the suggestion of Fortijuice - I had this when first diagnosed as I couldn't eat more than soup and jelly then. I had a promise of a visit from the hospital dietician re low residue when I was in there in July, but it never materialised. That sort of backup advice is what's needed, so hope you get it soon. You have good news to keep you going and I think you're very strong, so keep at it. I am down next week for a scan on 23rd, then appointment on 6th.
I wasn't even allowed weetabix in hospital - cornflakes or Rice Krispies. However I do love what I call 'hospital toast' hot and buttered if you can get it quick enough otherwise it turns rubber flabby in a blink!
Am on the case re food supplements ( but fortijuice is 😜 To me...).
I never got the toast hot and buttered. The Christie's was marginally better than Royal Lancaster Infirmary, who specialise in making it, then keeping it hot somewhere so that it comes out all stretchy and rubber flabby, as you so nicely describe it. I struggled with both to be honest. I ate a lot of those mini hospital yogurts. Fortijuice is very very sweet - there were some flavours I just couldn't deal with but I can't remember which now. I don't like milk products so the equivalent milky 'nutritional drink' is a no-no. Iain made chicken soup with rice - that was a winner, actually.
What a tough time you are having. So frustrating when people do not listen when you know things are not right.
On a brighter note what a super event to look forward to.
As others have said- a short term having build up supplements is a good idea. There are many of them and all can be prescribed by your GP. (The day job is dealing with these GP scripts and dietitian requests). Very much quicker through GP as well.
Obviously not enough dietitians or nutritionists in the NHS. GP Was quite helpful when I saw him this morning, his big message was listen to what your body wants, it doesn't matter what... a little of what you fancy is the right stuff!
Jacket potato and butter and cheese is what I'm thinking right now...x
Oh Janet you're having such a rough time but hopefully you an start to rebuild your strength. Congrats on the news of your new addition. All the very best, Kathy xx
I hope the dietician helps you rebuild your strength. I’m guessing the antibiotics will not have helped the diarrhoea even though they’ve cured you of the infection. All I know is youghurts and kefir may help restore the balance but the dietician will know best.
It’s such a shame you were hospitalised just when your family were over from Vancouver as you were so looking forward to their visit. Couldn’t help smiling at your grandson rescuing you from the hospital.
I am on special antibiotics to deal with the c.diff infection though I feel it has got to quite a severe level and hotline lady said it could take 4 days before I feel any benefit.
I didn't realise that continued use of anti biotics can cause c,diff to flourish but thankfully it is a few years since I last needed them, so hope they will eventually be effective
The hardest part of having grandchildren in another country is missing their close growing up. It is a year since we last saw them and the changes were incredible.... however at least my son and wife live near Winchester, a spit away by comparison... x
Oh Janet that sounds dreadful!! Glad things are better for you with the trots stopping and your breathing doing ok!
You would definitely benefit from fortisips I had then for a few months after surgery and before chemo. You could also try fortifying your food too as this will help with calories and nutrients
Hi there - my sympathy re the diarrhoea, I suffer from this now and keep it under control with immodium and I try to follow a low residue diet but I also have a 'leaky' rear and like you have lost so much weight as half the time it is just easier to not eat. I hope the nutritionist is a help to you - Nicola x
Do you know if you got an infection ? I was told do not take Imodium as it only masks rather than cures. Prescribed Vancomycin which Is a specialist a-b to help clear up the c. Diff.
Here's to the ability to eat a slap up 3 course M and S meal ( or equivalent....) . X
Keep writing everything down - it must help when it's all too much. We feel close to you when we read it and hopefully you feel comforted by that. Keep up the fight, you're one brave lady. Love Gina xx
Just to say thinking of you - the hair thing is probably a result of stress from all the other physical stuff going on - hope that you get sorted out with some sensible nutrition advice soon - as has been said , there are a range of fortified drinks that your healthcare team can prescribe just to keep you with the right balance of vitamins etc - also make sure your electrolytes are ok with all the diarrhoea x
Well they were here... but now gone so soon. So hard it's all or nothing, but we did manage a great family picnic at Dunham Massey before I went into hospital so rerunning memories endlessly.
Goodness Janet-so much to deal with. I had C-diff (they say from hospital stays do it--can show up quickly or take awhile) and I kept telling my onc how sick I was who said I was just nervous due to starting chemo. It got so bad I told my husband I think I would prefer to leave this world than keep feeling like this (not to mention the bum part) and he put his foot down that I call my onc again. My luck--she was on vacation and got a more experienced onc who told me to hospital NOW and she got to the root of my problem. What a nightmare for you and those treatment drugs are also tough (I had to skip treatment not because of the C-diff but because of the drugs to treat it!!) They gave me Flagel. Anyway--you do have more than that going on and I hope there is resolution for you soon and that your enjoying of your family is more than fleeting between treatments. Thinking of you and hoping this difficult time passes quickly for you. oxoxo Judy
I am now convinced I had it awhile but frustrated no one was listening carefully to me to what I can now see as classic symptoms for this very nasty gut infection.
I was crying with pain last night... but now on next level of painkillers to help until anti- b kick in .
Janet you’re such a trooper managing humour during what must be an awful time for you. I’m so sorry the bugger is back so soon and I sorry your hair ran away but I hope they can formulate a plan to try to sort it for you long term. Your grandson sounds a total delight and to be ‘broken’ out of hospital is epic. I hope your appointment with the dietitian is helpful and you are able to get some nourishment to give you some energy to fight, C diff is awful, my dad had it, he too couldn’t leave the throne alone, it’s a side effect I’m afraid, they got it under control and he was fine and he was 88 and fairly frail at the time, it just takes a little while . Congrats on the new baby, you must be thrilled. Big hugs and love ❤️Xx Jane
Hello lovely lady. So sorry to read your news that you have missed time with your precious family. I know exactly how you are feeling right now as I've missed 3 weeks with mine due to a new regime, which didn't actually happen in the end, bugger it. But, great news on the horizon for the new little one and you will be here to witness it. No worries.
Sending you all my love and best wishes. Over here we are recommended to take whey powder which we get from the pharmacy. I took it last year when one of the chemo drugs slaughtered me with sickness and the squits. I think it stopped me losing weight too quickly and kept the muscles functioning whilst the rest of me went through the wringer.
I can't believe your planned birthday celebrations were to be coming up soon and we were both supposed to be up and top of this rubbish ready to party!
Yes, nothing quite like the humour and creative thinking of a 5 year old, he gave us many a chuckle moment . His Lego skills are epic whizzing together models designed for 8-12 year olds. Before he left he very specifically told us which model he would like for his birthday ( in November! 😂)
Hoping I can begin to get on top of this infection soon as it is all a side show for bigger, more complex stuff down the line
Hi Janet you just keep on writing it down, we are here for you and here's hoping this too will pass and you look forward to your new arrival. You made me smile today thinking about your grandson and his Lego gun.Thinking about you Love Bridie
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Needle biopsy of lung nodule
Tough week
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