Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Greetings all from sunny Ramsgate. Poor @mowly77 I hope you get home and back on track with the chemo soon. @Silkierabbit I love your plan for the Maine Coon. @MrsPnut great news the port is out and your body can start healing the hole.
One week out and I’ve travelled the whole of the South coast into the wind while poor DH has battled headwinds on his bike. I had a fourteen hour day yesterday and was a bit frazzled when I got in last night. I couldn’t see the pontoons in the dark and I couldn’t find DH. Today is a nice easy day resting up. Tomorrow we are crossing the Thames to Harwich which will be exciting. I am not in any more pain than usual in fact it takes my mind off my aches and I am sleeping well. I find it quite amusing that our friends think we are doing something heroic when we are just enjoying our favourite hobbies. It’s a million times easier doing this than getting through chemotherapy even when I am seasick!
I am keeping an eye on you all and send best wishes to all those waiting worrying and putting up with stuff xx
Top

Well done on your adventures Top I reserved the Maine Coon today and we get him on 14 May so not too long. I also looked up delays during chemo and it does not seem to affect success rates so that is a relief. Delays between surgery and chemo do and I had those, think everyone has them atm, but it was 95% of success rate rather than 100% so not too desperate. The break is really nice and actually have 2 hospital appointments next week anyway with the bone scan and oncologist. Can get a few things done now, ordered a Maine Coon, have got a plumber coming in on Wednesday to see about changing sink downstairs and got the new sink and taps, cleaner coming on Saturday, DD starting GCSEs this week and trying to get DSs school changed and DH has mowed the lawn and cut plants and started clearing rubbish from under the stairs and he was very proud that he filled a whole black bin. Though if my chemo continues one week on two weeks off could be here for quite some time but lovely to have a non-zombie week.

How are things going Mowly I hope you can escape soon. I will add a picture of the Dad MC and another kitten. We are getting the kitten with the black background. I saw on the MC there are 2 Ukrainians with 22 Maine Coons seeking accommodation in UK, that would be my DSs dream but sadly we do not have the space. They do love water though so maybe Top could add them to her boat.

Oh my god @Silkierabbit I’m in love!! 😻😻😻 what a beauty!!

Thanks TooNoisy I also fell hopelessly in love and all rational thought went out the window. DD is also in love and sending his picture to all her friends, they are being asked to vote on names.

@Silkierabbit I volunteer for a cat rescue & we were supposed to be taking some cats from Ukraine but DEFRA have put a stop to all such animal transportations for the time being. We usually take some from Romania. I haven't seen a MC there before but a fair number of other pedigrees, which we sell rather than home as we can get a bit of money for the charity. Not as much as if buying from a breeder as they don't usually come with papers. Unfortunately they are often Queens that have been chucked out by unscrupulous breeders after they've been bred to exhaustion ☹ Have you seen the website CattreeUK? They do massive sturdy cat trees especially for the larger cat breeds as the regular ones aren't up to the job!

Back to normal programming...So after doing some very light potting in the garden yesterday boiling hot in the sun, by late evening I was very early to bed with a heat pad! My whole body gets stiff and sore, not only the joints- I'm beginning to think it might be some kind of neuropathy from my first lot of chemo as I'm not on any AIs at the mo. It seems unfair that I can actually dredge up a bit of energy to do something vaguely active then get penalised for it! I don't know how Top does it! Very inspiring though 👏

Hope you liked the South East @TopOfTheCliff I'm originally a "Kentish Maid" 😀

Thanks for the Cattree recommendation Haunted That's interesting that they are stopping cats from Ukraine, I looked it up and seems to be commercial cats rather than pets but I noticed when I searched Pets4Homes before deciding it was very dodgy on there and going to MC Cat Club breeder that there were a lot of imported MCs for sale, all saying from Russia. I did just sign a petition to get the industry regulated which was one of the cat charities. Yes the 22 cats is odd and I suspect they are breeding as it said wants an indoor space for their kittens and outdoor building for 22 cats with 2 people. Though it must be so difficult for them right now. Hope you can get pain sorted, I don't get much pain at all with my neuropathy just numbness and tingling though nurse asked about pain and when I said I had very little she said oh that will come, something to look forward to.

Hope you are back at home now Mowly.

Gorgeous cat @Silkierabbit, Maine Coons are not like a normal cat. Ours lies in your arms like a baby and has spent many years being dressed up by younger DD.

Great pictures of Ramsgate @TopOfTheCliff My grandparents used to live there and I have so many happy memories of holidays there.

@mowly77 I do hope you are home, I always think being home in your own bed is the best medicine.

Radiotherapy is progressing here, I have settled down to one bay and the same set of staff which seems to help.
Chest hole is not going so well, the stitches are tearing the skin because it is still so damaged and it is still bleeding quite a lot (but it did this when the hole first appeared and then settled down so just crossing my fingers that the same happens).

I am very excited about your cat @Silkierabbit ! You must keep us all
updated, especially on names. I can’t see @TopOfTheCliff ’s exciting pictures of Ramsgate but I live fairly near there so I shall imagine them, and yes what an achievement despite everything; I know what you mean, everything is easier than chemo in a way but it is still bloody brilliant. Enjoy!

I have only JUST got home from the pissing, poxy hospital. They tried to make me stay another night but after they served up the exact same fish meal for lunch two days in a row I just couldn’t take it. That and the lack of sleep because despite being in a side room I was still woken up at regular intervals throughout the night and then at 6am they all troop in with meds, taking blood pressure, asking you for your bloody lunch order! I just remember shouting “I don’t eat meat!” in my sleep in response to
someone suggesting I have the sausages. Oh and I got called rude when I probably did rudely point out I was asleep after being up
all night when some bint wanted to wheel me out of there temporarily for some reason. It. Was. Awful. But perhaps not as awful as the 4 days in A&E … just differently awful?

So I missed my pissing appointment at the Marsden AGAIN that’s now the 9th May yes everything happens on a Monday and it’s a bloody bank holiday next week. And I can’t have my chemo on Friday as I have a further 7 days antibiotics to take. And! I have to have another blood transfusion tomorrow as my red blood cells have packed up and gone home.

So. Bring on the Maine Coons. All 22 of them.

Your poor thing Mowly Sounds like you definitely need 22 Maine Coons to comfort you www.facebook.com/GCCFcats/ has the number to call, maybe take them to hospital next time as well, may help with getting attention and your own room. Though I'ld leave 1 or 2 behind for your 3 year old. At the moment I named him Mr Floof which DD surprisingly accepted but she is insisting he needs a middle name as well and that seems to be out to survey amongst several y11s.

Tops pictures are here. www.facebook.com/BBBBBB2022 My chemos are also on Mondays including Bank Holidays, seems to be cancer day though at first all my appointments were Fridays, I prefer the Mondays as when there was an issue on Friday you could never get anyone until Monday.

Hope your port wound settles MrsPNut and your MC sounds lovely, that's exactly the sort of thing my DD would do. She tried it on the rabbit and he was and relocated himself to live with DS.

Hello to all old friends and to those I haven't "met" before. It's been ages since I checked in on these threads, having realised last year that I wanted to take my attention away from cancer as much as possible, but of course I think of you often.
Briefly, dg with ovarian cancer in 2019, debulking surgery, chemo; lung metastasis late summer 2020, surgery, chemo, now on a maintenance drug (niraparib) and am doing fine.
So pleased to see posts from @MrsPnut, @TopOfTheCliff , @HauntedDishcloth, @Thymeout , @thereisonlyoneofme and @balkanscot just from looking at the first page.
Wishing everyone the best possible, whatever stage you're at.

Quick greetings from off Orford Ness from Top. It’s blinking freezing here but we are making good progress up the east coast. Heading for Lowestoft tonight and a rest day. I just saw a seal! DH is in Woodbridge eating gammon pie. On the whole energy levels are normal but I’ve got a lot of nerve pain in my arm from winching things. It’s worth it though I’m having the time of my life!! This was the dream that kept me going through 2020 and 2021!!
love to all x special wave to @Bloodybridget ill be in Norfolk this weekend I hope!
Top

Hello Bridget so good to see a post from you.

Lovely to hear from you, Bridget. So glad you're doing well.

Just on my way back from London and seeing consultant. Five hour round trip...
Cancer had spread and they removed all cancerous lymph nodes, thyroid, tumour etc.
They want to look at lungs again with a scan.

Right vocal chord is still paralysed which explains gravelly voice and just not being bothered about talking (which is unusual to say the least) will need some voice therapy locally.

Also issues with swallowing and eating. Could be linked to Crohn's disease though as am quite scarred.

Will need iodine radiation treatment (2-3 months wait) locally. He has contacted local hospital.

Bowel surgeon is now making noise about me going In before treatment starts to have tumour there removed and have bowel repaired and colostomy bag moved.

Will need pre hab and had to be re intubated due to swelling and breathing issues.

Not really feeling going back at the moment and honestly just want to be left alone. Not managing as well as I thought I would as used to surgery.

Feel like a sulky petulant and quiet child.

Sending love and hugs Stomach that sounds really tough. I think its normal to feel like a child when cancer treatment gets scary. I always feel like the child in chemo as always seem to be youngest and I sit there and eat my ice lollies.

Glad trip is going well Top

Hope you are OK at home Mowly

Love to everyone else. Just bone scan and oncologist and bloods for me next week, no chemo again and getting things done without chemo this week which feels good.

Had pre op meeting today for second surgery. They told me that a full node clearance hadn’t been donewhich surprised me as I thought it had. Will have to ask surgeon if I remember…
They took bloods which I wasn’t expecting and had a girly night with my friend who I hadn’t seen since November when this all started, so a few glasses of Prosecco had been sunk. Think my blood will probably be pure alcohol! Also had ECG which was fine, so bloods permitting am good to go for the 12th. Isolation starts Monday.
Am absolutely bone weary, the hospital is 20 mins walk and took me nearly 3/4 of an hour and I was in tears when I got there. I just have no strength for anything other than being in bed atm.
While I know the worst (chemo) is over, am not looking forward to being on hormone pills for 10 years, Zoledronic acid for 3 and goodness knows how much radiotherapy after surgery. I know it’s more than 5, so I’m thinking maybe 15? Does anyone know how they space them out? I know the 5 is over a week so is 15 over 3 or do they spread it out more? Again, I should have asked but I forget when sitting in those offices!

@Stomacharmeleon I can’t imagine how you must be feeling. It just seems like an amazing amount to deal with, both physically and mentally!

@Silkierabbit , I don’t have 22 cats, only 3 but I love them dearly. On my bucket list is to get more, but definitely not 22. Mine are moggies though, but with such sweet natures. They really keep me going. Glad you have no chemo next week. Mine finished 2 weeks ago, and when I get some energy back I will be very happy.

Positive thoughts to all, and a peaceful, pain free weekend.

@Bloodybridget so, so lovely to hear from you again. Glad you are doing as well as one can be under the circumstances.

@TopOfTheCliff amazing adventures, wow! I love hearing your trip updates.

@mowly77 big hugs to you, what an utter shitstorm!

@Podgedodge I had the standard 15 radiotherapy sessions spread over 3 weeks (Mon-Fri).

And now for my shitstorm. DH went to A&E on Tuesday as he noticed he had slurred speech and could not move left side of his lip and was drooling. He went in on the assumption it may be a sign of stroke. He is leaving the hospital tomorrow with a very real possibility it may be a primary brain tumour (frontal lobe, right side). I just can’t… If my bastard BC recurs again, who knows, DS may end up an orphan. And this is SUCH a hard possibility to ponder. I mean, how can this have happened???

I had my bloods taken yesterday in preparation for Tuesday’s session with zoleodronic acid. Am petrified they will discover bloods are off, especially under the circumstances.

Ah @balkanscot I couldn’t read and run. That is a truly awful blow when you have been holding things together and recovering from your treatment. I guess you just can’t take it in at this point. If you need to rant and swear we are hear to listen. Here’s hoping it’s something eminently treatable. Have an inadequate but heart felt hug <<>>
Top x

@balkanscot just so sorry to read your update and thinking of you and DH. Sending lots of love to you Xxx

@TopOfTheCliff and @Fantasea thank you. Your words brought tears to my eyes. I will probably rant A LOT given the circumstances. DS is coping remarkably well, considering. But he is teary and just wants his dad back from hospital (he hasn’t seen him since Tuesday - FaceTimed, yes, but it’s not the same).

@balkanscot I am so very sorry you and your DH are facing this awful possibility; am sending you every wish that's in me that whatever is wrong can be treated successfully.
Thanks to my old mates for lovely greetings. @MrsPnut I noticed this morning that you are really going through it with treatment, huge sympathy.

@balkanscot Much love to you, the only thing worse than being ill yourself is seeing someone you love being ill and being powerless to do anything. I hope your DH is home soon with a workable diagnosis.

@Bloodybridget How lovely to see you here, and thank you. You know me, if it isn't going wrong or a huge drama then is it really happening.

@Stomacharmeleon I don't blame you feeling like that in the slightest, I hate fuss, faffing and feeling ill so I always feel like stamping my feet and shouting "I don't want to".

@Podgedodge I'm having 20 rounds of radiotherapy, 15 plus 5 boosters to the tumour bed. I'm nearly halfway through but having to visit the hospital every day is making me murderous.

@mowly77 Hopefully your red blood cells have returned from their trip and things are settling down. There is nothing worse than being in hospital and just dropping off to sleep then someone bustles in to do obs or try to take blood from you.

Chest is sort of settling down now, not so much bleeding and more back to the fat necrosis discharge that I had before the port was taken out. Hopefully once the stitches are out on Thursday then it will be much happier.

Glad your cats help you Podge and your chemo is over. I was told my radio would be every day Monday to Friday for 15 days so over 3 weeks with weekends off. Complete PITN to be at hospital every day but from what I've heard its mainly just tiring, think its very quick in the actual thing though ours will end up being 1/2 a day a time with the getting to hospital and back, parking being 30 mins away, waiting and then radio. Some people seem to be on a 5 day more intense one now which I think is the 15 day dose in 5 days though I have not got to radio yet, have that joy to come.

Balkan so sorry about your DH. I hope its not a brain tumour and if it is something its easily treatable. That scares me as well the thought of something happening to DH as well for the kids and I got a will and my lovely friend agreed to have the children if anything happened to both of us. Though need to get DH to do his and mine still has to be signed. How old is your child?

Glad things are improving MrsPNut

I am glad to have 2 weeks off chemo now though next week I have a bone scan, bloods and oncologist over 2 days so does not feel like an off week. I am still really tired and brain not totally functioning (apologies if I have missed anyone) and have issues on the right side again, leg keeps going numb and yesterday woke from a nap with right side jaw pain and could not move it for 10 mins or so. It came back but still pain which then started going to eyes and ears. Had similar before but more eyes then. Not totally sure what it is. Before hospital said unusual and they guessed neuropathy but not sure.

One-off clean being done today. DH got up today and told me he was going to move at the speed of light and sort the house before the cleaner. I actually heard him operating the hoover. Though I am not totally sure what he is doing as he asked me if he should move the entire contents of a downstairs cupboard upstairs and I am baffled as to why he thinks that would be helpful. Though normally his idea of cleaning a room is to move all the junk to another room and then say he has sorted that room which he has but then he has trashed another room Or moving rubbish to the garden is another favourite of his. Sorting schools for DS and plumber as well and DD has visited a sixth form and had first GCSE thing.

Hello @Bloodybridget Good to hear you are doing well 🙂

Have you heard anything more about your DH @balkanscot ? I hope he's come home at least so your DS will be less anxious.