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

Just wrote a long post and lost it!! 😩

I’m feeling better today, thanks everyone, but the my eldest has tested positive for covid this morning 😩 I’m negative at the moment but of course my mind is saying I’m bound to contract it, and then my surgery will be delayed…trying not to panic until there’s something to panic about 😕

I also was very sad to read Deborah James’s update this morning.

Love to you all as usual xxx

@thereisonlyoneofme you poor thing, I can totally relate to the depths of doom after a few days of pushing away thoughts of OC, that's how I tend to exist. I can push it away for a week, maybe two, but it's always there. Scanxiety makes it worse, the reminder of being back in hospital, having tests and then the worry of the results, expecting the worst whilst hoping for the best. Going through it alone must be particularly tough. Sending hugs Xxx

I'm so sorry @thereisonlyoneofme I feel exactly the same. Some days it's business as usual (or as much as usual with chemo side effects now kicking in & a bloody picc line etc) & other days I just spiral into doom & anxiety & very dark thoughts. It's extra extra shit not having anyone you feel you can talk to about it too. You're right about Covid though, I go to all appointments alone, not that that helps you. I don't mind because I feel I'm subjecting others to my pain in a way if I drag them along with me & I couldn't think of any friends I'd take anyway. One friend I message a lot now has some health problems but we swap stories/moans. If your friends are genuine I'm sure they wouldn't think you were whinging. But you can always whinge to us! No whinge too big or too small, roll up roll up ...

@thereisonlyoneofme I hear you, I was recounting my diagnosis tale to someone new today (One of my radiographers - I didn’t accost a random on the street) and it was only when she was horrified at me being sent off to book a CT scan with no paperwork just a ratty bit of tissue having just been told that I had cancer when I came in for what I expected to be a straightforward colposcopy appointment that I realised what a shitty time it has been for us during the pandemic.
I have attended every appointment and every treatment by myself and DH has spent many hours sat in the car reading his book.

@MrsPnut having to book your own CT scan like that is outrageous, the treatment of us cancer patients during the pandemic has been dreadful and yet has become so normal now. I received my diagnosis alone as in inpatient and have also attended every appointment and treatment by myself. My OC was an incidental finding on a CT scan ordered to check my organs for a blood cancer yet I waited 3 and a half months from this point to get any treatment as there is a pandemic on, don't you know.

I've had a run in today with whomever picked up the phone at the hospital pharmacy, certainly the rudest encounter I've ever had in the whole NHS, and there have been plenty. I elected for a telephone appointment for my monthly review of my oral chemo and the arrangement is that the chemo unit send over the prescription to the pharmacy who courier them to me within a couple of hours. After 4 hours, I hadn't heard anything, so phoned the pharmacy and asked nicely, was cut off mid-sentence with a 'let me stop you there', then was lectured about how the courier service is being scaled back for financial reasons and asked if anyone else could drive me to collect them 15 miles away. She left it with me that they 'should' be available tomorrow. When I came off the phone, I felt really upset and cross, I'm so battle weary and still wasn't sure whether or not they would be sending them. I decided to ring the chemo unit to complain about how rude this woman had been and to see what was happening. The receptionist went off to check with the specialist nurse I'd had my appointment with this morning, then assured me that I would have a call from them later and the courier service indeed was available to cancer patients. About an hour later, the same rude woman from the pharmacy called, nice as pie this time and said that she'd 'checked' and my drugs would be with me in the next two hours and they've just arrived, lol.

@Silkierabbit is there a photos of Professor Noodle Floof that you can share?

@Podgedodge I shaved mine off too, once it was coming out in clumps.

@MrsPnut How did the gynae onc appt. go today?

@TwoBigNoisyBoys I hope you manage to dodge Covid pre-surgery. 🤞

@mowly77 Glad to hear DP is actually being reasonable/helpful.

DH has the neurosurgeon appt. tomorrow afternoon. He has been so withdrawn, sleeping a lot and is generally 100% certain he has got inoperable glioblastoma. I can’t convince him otherwise and this is beginning to irritate me enormously. I know I am being unreasonable because I was once too on that other side, imagining all sorts of stuff. And now, being on the “other” side (lucky me, I have now been on both sides!), I just can’t cope. I can’t cope with the potential bad diagnosis, I can’t cope with the thought of being a widow with a challenging 10-year old (had epilepsy surgery and is behind where he should be in terms of school work because of not quite being able to catch up yet), can’t cope with my own fears of recurrence and leaving my only child an orphan. I JUST CAN’T! DS has been particularly vile to me this evening, DH has completely switched off all parenting and I don’t think I can cope.

@thereisonlyoneofme I totally hear you. I can’t get my head around that if DH goes before me and then I go in the foreseeable future, who will mourn me? My in laws (currently in their late 70s) will probably have died by then. And my mum (currently in her mid-80s) who lives abroad will be dead by then as well. DS? Who knows how his life will turn out to be, at the moment I can’t see him living independently even after he turns 18. I really got downbeat tonight, how can my life be turning out like a cheap daytime soap opera?

I thought of listening to Deborah James’s last ever podcast but I think I will give it a miss. Am in no mental state to process any more cancer-related shit.

@balkanscot I'm so sorry to read your update and am thinking of you, DH and DS and sending love Xxx

@Fantasea I think I will try and argue for a courier delivery. I will have to go to Maidstone 3 times next week, for bloods, scan and pills ! Im 15 miles away too.
I did ask about it a couple of months ago but said that they werent doing it. I shall go armed with the knowledge that if I push hard enough Ill get it ! You are at Maidstone too I think ?
@balkanscot Sorry to hear about your troubles.
I took myself off to see the Lion King in London today, it was terrific. Forgot about all else for a few hours. Cant sleep now though

@Fantasea sorry, you are not at Maidstone, you are Southend I think !
Its a lady on the Ovacome forum thats at the same hospital as me. so maybe the courier thing is not happening at mine !

Hi all,
Could anyone please recommend any supplements that I could take to avoid malnutrition, after the loss of 2 stone, and no appetite?
Also any recommendations for an alternative to Codeine, which makes me ill.
I'm currently awaiting a second opinion, having been refused further treatment due to my cancer having metastised, and have developed back pain.
Thank you

Hi, Orpheline
can you ask for oxycodone? I have the slow release (as well as a liquid for breakthrough top ups) which is effective and seems fairly innocuous -codeine made me constipated, shimmy and not very pain free.
could you get fortisip or the other milkshake version prescribed for the malnutrition (though they are foul)?

@Orpheline I have fortisips by prescription... a trays worth and they are good if you just can't manage anything. Some flavours are much more palatable than others!

Sorry and hugs for those having a rough time at the moment. Xx

Hi everyone, thanks for your well wishes but too late…I tested positive this morning 😩 currently waiting for the hospital to call to let me know what’s going to happen about my surgery. Bugger.

@balkanscot sorry to read your update, god that’s so hard for you both.

Sending love to you all as usual xxx

@Orpheline I had Ensure drinks prescribed before my surgery and the banana one was surprisingly very nice. They are quite small too.

@TwoBigNoisyBoys really sorry to hear your news, hoping you get your call soon so you know what you're doing Xx

Here is MrFloof Balkan. So sorry to hear your news. I really hope its not as bad as your DH fears. I know early on its quite common to fear being at the worst stage - I think its to prepare for the worst, hope for the best but hopefully the news won't be as bad as your DH fears. We get Mr Floof tomorrow night.

TwoNoisy Sorry about covid. I hope it does not delay things too much. I think they have calmed down a bit on delays but best to ask. Some people appear to have negotiated shorter as well.

Orp So sorry to hear you have mets and they aren't doing more treatment. I would definitely do second opinion and hope you can get better better relief.

I got a Little Lifts gift box for chemo and offered it to the kids and DD has taken 90% of it, its fine with me, cheers her up before GCSEs as well as Mr Floof. I sent ESA50 off, could not get hospital or GP to sign but sent it anyway as they sent it to wrong address for 3 weeks and needs to be back in 4 with their Freepost service and have letters saying having chemo in it. Will keep trying hospital they did take it in the end so may get it through post and forward on. They also sent an ESA50A rather than ESA50 I had done but it looked similar so just sent back.

Plumber came today and fitted new sink in bathroom which was good, something achieved at last. Cancer treatment is obviously very important but never feel I am achieving anything. Other than that I am doing kids things a lot but schools for DS are so depressing and no-one will help and I ended up very depressed for past couple of weeks. The cancer staff are being so lovely and my counsellor is continuing for free.

Social services could not provide anything useful so closed that down but at least we know. EHCP has been issued and had meeting with the school DS is being forced into against my wishes as nowhere wants him as he is mute and SN kids cost schools money and not enough school places in his year and the senco was so horrible saying she will try and get him out day 1. And telling me I was a crap mother as first thing when told I had cancer (which also they told me could be stage 4 alone first time) was not putting them both on the 3 year wait for cahms. Whole meeting was like that and I ended up in tears. I had done chemo and had no sleep and been phoning for help for DS a lot. Luckily my lovely cancer nurse phoned just after and spent an hour on the phone but it really should not be her. The kids are also both on the cahms list, not that it has done any good, my GP said its shite and not fit for purpose. I asked about right to choose and she says that just gives you the right to choose a shite service elsewhere.

Love to everyone. Just getting more Mr Floof things tonight. Feel a bit better getting a few things done. Been told I can stop steroids if I want but not sure, they do make me anxious but have a weird love / hate relationship with them. Sorry have missed people I am on 3rd day with no sleep.

One thing made me laugh in last chemo when finished they said to an old lady in a wheelchair your next appointment is on Friday 13th in the blood department, really seemed like a horror movie event.

@Orpheline is there any food at all you can stomach? The drinks were undrinkable, to me. I was throwing up a lot at the tine I was supposed to be taking them so the association isn’t good … I was unable to eat, no appetite but made smoothies with bananas yoghurt honey oats plant milk anything really and forced myself to get some calories in

pain relief : codeine makes you so constipated! Morphine? Not as constipating but a movicol works if you are. If you have slow release twice a day and top up with oramorph it controls the pain fairly well.
Oxycodone sounds good too.
I hope you get your second opinion soon. They can’t just refuse to treat you - did they say why?

Thank you, everyone. Sadly, the news is not good - glioblastoma stage 4. Operable and treatable with radiotherapy (and maybe chemo, depending on pathology results - hopefully methylated as then it means it can be targeted by chemo). 12-18 months. Think Tom Parker, Tessa Jowell. NOT good. I am just so scared as DH has been great with progressing DS’s learning and advocating for him during meetings/conversations with school. Now it’s up to me to carry that on but I am simply not good enough to do this. This is my biggest fear, that DS’s learning will plateau because of me. So, so many scary thoughts in my head just now. Op to take the tumour out (2 cm, presses on his movement nerve) on Monday, maybe even live craniotomy (depending on anaesthetist’s opinion), home on Wednesday if everything goes well. I cannot believe I will be a widow.

Widow with added layer of my cancer coming back again. You couldn’t make it up.

@balkanscot I’m so very sorry to read your update. Thinking of you and sending you all my love. Nothing useful to say, I wish there was xx

@balkanscot Oh I am so sorry that you are all having to face this. Cancer is such bloody bastarding bollocks. Much love to you.

So sorry @balkanscot .
There are no words, only thoughts.

Balkan I am so, so sorry for what your family has to face. Please PM me if you want to chat - I wish I could take all the problems away for you all. I have a child with SN and it is so very difficult at the moment to get help, please don't blame yourself its the system which is broken, you are a lovely Mum. At the moment I would concentrate on your DHs operation and your cancer but later I can recommend IPSEA is very good for free advice, and there are SN chat boards here with people who know the system. If you want something like a specialist setting for him then I have been told to get private professional reports like ed psych which clearly state needs. But its too much to tackle everything at once and you have so much to deal with. Thinking of you all.

@balkanscot just so sorry to read your update. Keeping you, DH and DS in my thoughts and prayers Xxx

@balkanscot Nobody deserves this kind of burden, it's beyond unfair. You wrote you are worried about your DS, as to be expected, but how it comes across is that even in this initial stage of shock & fear you're determined to keep going and doing the best you can manage to carry on the foundation you & your DH have both provided so far. It sounds like you've got a lot of practical stuff to get through right away & then at some point I hope you can plan to have some gentler & peaceful family times. F*k cancer & keep f*king the bastard.