Decembeard

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IanW84

Losing hope

Hi all. Not sure where to begin really. My wife (34) and I moved to York about 18 months ago from London. We have a three year old son who is amazing. We tried for a baby in the summer and became pregnant in September. In October we lost our rental home and had a miscarriage. We were in a position to look at buying so we started that process and decided to temporarily move in with her parents.

Around Christmas time she started getting tummy pains after eating but that was it, she also started getting back pains and tiredness, but so did I so we chalked it up to (you guessed it) IBS and a bad mattress. My wife works hard and with our son getting a GP appointment was time consuming. She finally got one booked mid Feb but it was a 3 week wait. In that time she started to develop more sinister symptoms, like getting full quickly and dropped appetite and a little weight loss. She got a blood test which threw up slightly raised LFT inflammatories.

Her Dad is a retired GP and suspected gall stones so fed her lines on what to say to get An ultrasound. We were in the final stages of completing on our first house. And due to being under investigation could not secure life insurance. We ended up paying for a private ultrasound. After the ultrasound she gotta call from the GP to come in. My mother in law took her in and I stayed in to work. They got back and called us into the lounge, my wife looked fine but a bit blank. Her Mum sat down and then crumpled saying the ultrasound showed metastases. I’m a failed medical student but I know enough to know what it means. My wife was in shock. I just want to walk into the sea and end it all but have to keep going for her and my son.

Since then she has dwindled before my eyes. Endless tiredness, liver pain, constipation, no appetite. Colonoscopy revealed a small 2cm primary in the sigmoid, CTfound lots of nodal spreading and mets in the liver. I don’t know how many mets but her liver function is good and her Dr says he wants to treat it aggressively as she is fit. Waiting to hear back from the biopsy results to see if she can have a third immuno drug that improves efficacy.

I’m completely heart broken. My wife already followed bowelbabe on twitter and says she knows the statistics. But I don’t and I’m too terrified to look based on how she talks about it. It feels our best case scenario is 5 years together which is still a complete tragedy to me. Feel so cheated and angry and the idea of her not seeing our amazing son grow up makes me weep constantly. How can I possibly get through this?

I could say more but conscious this is becoming like War & Peace.

IanW84

Hi all. Thanks so much for your responses. I shouldnt have read them in public as Im sobbing now. My wife was meant to start chemo last week but got a 24 hour vomiting bug so it was rescheduled to today. She was so brave and worked so hard to get the courage to start chemo but again today its been cancelled. She has a really high pulse rate and high white cell count so they suspect infection.

I wanted us all to have a weekend rallying around her but now she is going to be back in hospital. They are doing the right thing but you ever feel that some malignant force is constantly pushing you back?

Im proud of how I am handling this. I am trying to take each day at a time, using my support network and regular appointments with my GP. Ive also signed up to so the Asda foundation 10k in York and have started running despite being 15 stone. Have raised over 2k already.

The unfairness and anger and despair is just such a constant. Especially when I think about my son. Im aware of the dangers of Google so will stay away. Just have no idea how to take each day at a time.

Chemo rebooked for next Wednesday. Thank you my new friends.

Ill take a look at the services you mention. :x:

bettebette

Sorry you find yourself here @IanW84, I am sending positive thoughts to you and I hope your wife recovers from the infection very soon (and fingers crossed for next Wednesday).
Lots of wise words from everyone here and some good advice about looking after yourself too.
With best wishes :x::x::x:

HH79

Hello @IanW84 I’m so sorry and you are all being amazing in this terrible time. So I’m going to write quickly whilst Lego movie is on!! Firstly there is hope and medicines changing all the time. I was diagnosed almost 3 yrs ago and there’s new immunologies come into fruition in that time alone. Try to stay off google!! I’m only learning now can we can only go my how my own cancer behaves and treat is as each scan will advise! Like many on the forum here I’m on permanent maintenance which is good and let’s me take kids swimming and keep well. You will feel so much better once chemo gets going and scans WILL show better news.

There are some things to look at emotional support eg good hospices (dont wince at H word! They support the living!!!) will provide counselling and holistic support for you all, for your child, would anti depressants help you? Your wife? There are financial benefits too eg google PIP and ESA and get in touch Macmillan CAB on this. I’ve seen incredible stories particularly with liver mets of people becoming operable after chemo. Lots of love to you :x::x::x::x::x:

Gypsy

Thinking of you and your lovely wife and son @IanW84 . I hope that they will soon get the infection under control. Hugs to you both. Gypsyxxxxxx

Sasa

Hi @IanW84 , just a little extra thing to add to all the above advice and support is that there is a private area on the forum that you can join as a loved one of a patient, I find it helps, as I can post on there with things I would never want my lovely hubby to read, this may help you offload from time to time which, believe me, we do!

Also, my total saviour on this journey has been to sticking to being in the ‘now’. It’s the only way I can get by. I will absolutely not let cancer take one single day more from me that it has and will. I am really strict about this. 😆😆😆 it works for me and my hubby and we seem to have a ‘normal’ life that is just a little different to the one we thought we would have. No point in catastrophising, nothing ever ends up the way I expect anyway, and if it did I would be a millionaire 😆😆😆

The love you have in your heart shines through and through, savour that. Savour it every moment and don’t let cancer block you from doing that.

Lots of love

Sarah :x:

jj

Hello 👋 @IanW84

Do not look at all that has gone wrong, or think of all that could go wrong, just think, right now I am here with my wife. Let’s make this moment count. I assure you that you will find lots of moments along your way, so just stay positive.

I have read several of the members profiles, both patients and relatives and it’s just amazing what each one has gone through, going through and winning, one small step at a time. So be strong.

Keep writing in and telling us what’s happening and we will give you as much support as we can to help you through.

Regards

lofour

@IanW84 so sorry to hear that. You are managing so well to not google. I was very devastated to say the least when my husband was diagnosed with bowel cancer with liver mets last year, at the age of 27. My world was turned upside down. It is completely normal and common to feel shocked, angry and unfair. I have gone through all those stages.

There are a lot of treatment options out there. Statistics are improving. My husband had to go to A&E shortly after his first chemo, because he was unlucky and caught a strong flu (dr did not think it was related to his chemo). We noticed that it took him much longer to recover from any flu/cold. My husband can pick up bugs very easily. When he was on chemo, we were very careful and tried to avoid crowded public places as much as we could and make sure always washing hands before food. We also avoided going abroad for holiday if it was a short chemo break. I know it was a bit extreme, but it was better than getting sick.

I hope your wife responds well to her chemo and you feel a bit better soon. Do take advantage of all the services available to you and look after yourself. I would strongly recommend Macmillan helpline. They provide a range of cancer support services. You can ask them anything or just have a chat with them.

Sending you lots of love. May you have the strength and patience to support wife going through the treatment.

jandals

Hi there just wanted to add that just over a year into this horrible time I remember the first few days weeks months being the hardest. I swear I’m the first week or two I could smell our fear (we do shower every day!!!) it was all incomprehensible how anyone or anything could ever be any kind of normal or go on. But it does. And you do. And your wife and son do. And you love each other continually despite this and you will laugh together again. I didn’t think we would or I could but we did after a while again and still do. We still have ups and downs but if anything we appreciate each other more than before and love our kids with all our hearts (and get frustrated and shout at each other and them but that’s ok sometimes too). Take heart that each persons cancer journey is different your wife will have strength and support inside herself and from you you didn’t anticipate possible. We were told
Inoperable and incurable and don’t even hope that might change. Fingers crossed (I am still scared it might be thwarted) a bowel and liver op is planned for mid May for my partner... so stats and prognosis are rubbish you are not a number. My suggestion: Look after yourself and get some counselling so you can look after you and her better and continue to get support wherever you can with your little one too. We never told our kids the full story yet. Just daddy has tummy trouble
He is going to get an operation to try fix it... but totally respect people who do tell. There is no right or wrong in that I think it’s each to their own preferences... wish you loads of luck and love and support :x::x::x:

Lee1974

Hi Ian, sad to read your post, but please try to look at the situation as all the discovery has now been done and there will be an action plan in place.

Assuming you are still in York, can I just say the team at the hospital at the Magnolia Centre are excellent. I was there under the care of Dr Chan and he always had time for the patients and the nursing staff are just awesome.

I moved away and started treatment at a much larger hospital and the difference in the personal level of attention is huge, so rest assured your wife is in good hands.

I'm now 44 and started off at Stage 4 with peritoneal mets all over the place, but just over 2 years on from starting treatment of just chemo there is sod all left, just some thickening of the small intestine. The treatment really works!

Once treatment is under way, you feel like you have started to turn a corner. Trust me, it is onwards and upwards from this point.

Ignore the stats, they are well out of date and arise from the main demographic of patients (70 yer old blokes) rather than younger patients who generally bounce back better and are not as flawed by the treatment.

I also have a lot of time for Deborah James (bowelbabe) and she does a lot to raise the profile of the disease and for people to be more aware of the symptoms, but she does keep a good degree of negative undertone to her illness and my personal view is that if you let the illness consume your life and never stop talking about it, you almost give it a place to roost.

It's early days for you guys, but there is stacks to be positive about and once your missus has a few rounds of treatment under her belt and you adjust to the "new norm" it all comes good.

soph86

Hi @IanW84 sorry you’ve found yourself here. It is tough and particularly hard to process when your wife is so young. I was only 31 when diagnosed BUT please don’t lose hope. As @Baxter2 can testify there will very hopefully still be a long way to go. It’s really hard but do try to search for positivity, it’ll take some time but I promise you it gets easier.

@Bear G id just like to say that deborah’s path had been a particularly difficult one and she is far from dramatizing her position. She’s fighting her behind off when treatments often fail her. She’s had seven lung ops, a bowel op and now liver ops. Not all of us are fortunate enough to be on low dose treatment that works for multiple years. That’s luck of the draw. Also I would like to clear up that a lot of the money she ‘makes’ on publicity campaigns are actually donations by big brands to charities of her choice.
:x:

ch7091

@soph86 I wholeheartedly agree with what you have said about Deborah, she has endured a lot and still manages to put a smile on her face and make the most of every day. I'm not sure I could be so upbeat if I were in her shoes.

Jodie :x::x:

Scattyblonde

@soph86 you are so right about Deborah, I saw first hand the rash she had from panatumamab it was awful, I know she has really struggled with her latest treatment but somehow manages to carry on and do amazing stuff. :x::x::x:

HH79

Hi @Bear G Deborah doesn’t make money for herself. And doesn’t dramatise, she’s had a very tough run in terms of treatment, recurrence and Ops. @IanW84 the stats are what they are but based on majority elderly px where some don’t have any treatment vs those on here 50 cycles etc / Ops, so many I read going well beyond the stats.lots love :x::x:

Bear G

@soph86 @HH79
I have deleted the comment as it was being taken out of context and I don’t want to distract from the point of this thread, which is to support Ian.

chrisCl

Hi Ian. I recently had treatment at the Magnolia Centre in York and can only emphasise what Lee1974 said : the whole team top to bottom are magnificent.

spannerkate

Hi @IanW84 sorry I'm a bit late replying to this. I just wanted to say I'm so sorry about your wife, and I wish her and you all the best during her treatment. My boyfriend also has liver mets and has recently finished four cycles of chemo. We were both a bit scared of the chemo before it started, but it's actually not too bad, although everyone is affected differently. It felt good to start treatment though, and to know that he has a team that is doing everything they can to get him to the stage where he can have surgery.
I also wanted to say well done for signing up to do a 10k and for raising all that money! I've also signed up for a 10k race despite never having run further than 5k, and I don't know about you but I find that running helps me feel a bit better some days. It feels good to be doing something so positive and proactive anyway. Keep up the good work!
Like you, we'd just bought a house when my boyfriend was diagnosed, and we hadn't yet got round to sorting life insurance. Sometimes you can get some through work, but if you have any concerns about money I would really recommend ringing the Macmillan helpline, they really helped me understand our options.
You've done the right thing in joining this forum, there are so many lovely folk on here and I hope it will help you :x::x::x:

jinnyp

Hi @IanW84, sorry I’m very late seeing this but just wanted to say that I'm so sorry about the situation with your wife’s diagnosis. I hope that she is feeling a little better now and will be able to start chemo very soon.

It’s a very dark and lonely place at the beginning of all of this, I think everyone on here has been there and can feel the pain and despair that you both feel.

Stats are out there and it’s hard to ignore them but as so many people have said they are out of date and not specific to your wife .... there are lots of inspiring people and stories on here that gave me hope and helped me crawl out of the pit of despair I was in at the beginning.

I was diagnosed incurable and palliative in August 2017 with multiple mets in my Liver and some in the peritoneum. The chance of surgery was minuscule despite a good response to chemo but after my 4th opinion it looks like I will be operable after all! No guarantees of course but a chance I didn’t think possible at the beginning.

Please be kind to yourself, the main focus will of course be on your wife and her treatment but from experience it is sometimes harder to watch from the sidelines and I know my husband has felt very helpless at times. Look after yourself, take help when it’s offered .... it does get easier once treatment starts although I never really believed it could when people said that to me 🙂

Sending love and strength to you both, Jane :x::x::x:

lilmil

Hi @IanW84 looks like you've had lots of good advice and support on here and i just wanted to offer mine. Its so so horrific when you have little ones i was diagnosed at 38 and have to girls then 1 and 5. I was stage 3 have since had chemo and radiotherapy 2 ops and now its gone! See there is hope! I'll obvs be checked for 5 years but i remain positive and i think being positive goes a heck of a long way.
Big hugs to you your wife and little one. 🤗😘💙💙

azro3

Hi @IanW84 just wanted to add my support to the above. My wife was also diagnosed aged 34 (back in 2013). She's still here and had 3 1/2 years clear in between treatments. It's been harder than I could ever have imagined, but as people have said, try to take one day at a time and concentrate on looking after one another. My wife and I have still had some laughs since her diagnosis and we've appreciated each other and the time we've had so much. I just try to concentrate on being there for her at the moment.

The forum is a great source of support and positive stories. I would say to try to keep up your own support networks as well - I isolated myself a bit to begin with and I don't think that it helped me.

Wishing your wife the best possible results from her treatment and best wishes to you all.

Yorkterrier
Quote from @Lee1974:
Assuming you are still in York, can I just say the team at the hospital at the Magnolia Centre are excellent. I was there under the care of Dr Chan and he always had time for the patients and the nursing staff are just awesome.

I can personally vouch for this having had my chemo at York. A really good team of nurses and doctors.