What is it like?

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Hi all,

I have stage 4 DLBCL, I'm about to go through my 6th cycle of r-chop chemo Monday, and I heard 2-days ago that they found the CD5 chromosome marker which indicates that my stage 4 cancer is even more aggressive than they thought, and really sneaky. I was told that even though my mid chemo scan revealed I was mostly in remission, and they expect my end of 6 cycle chemo scan to reveal that I'm in full remission, however they said it will come back, and very quickly.

So they need to give me powerful LACE chemo followed by stem cell transplant in January. It would be using my own stem cells. 

I've been skimming through some posts here, and although I haven't read all of them, so far I can't see any posts here that talk about the period in hospital and what happens and how it feels. I'm sure there are individual profile stories that contain this information but I haven't got that far yet. 

I've been told I will have to be in hospital 3 or 4 weeks but I just need to know what it's like. I will be going into Hammersmith Hospital I think.   

Will I be in a plastic tent in the bed? Or not? How does the LACE and SCT treatment feel? I was warned I might end up in ICU.

I'm 70, but of course a really young "cool' 70, and I have a positive strong attitude, strong body (except for the the Cancer destruction of my right tibia), but I must admit that this news has really rocked my confidence and I'm feeling very low and a bit weepy about it all.

I don't know if there would be any TV in the room, I presume so, but presuming there is decent Wi-Fi I'm guessing taking a tablet, cell phone and some books will help. Would you recommend audiobooks as well? Because I know when I'm receiving even the r-chop chemo I really don't feel like reading. So I thought an audiobook would be nice. What else? Please let me know your experiences if you've had LACE as well, that would be very helpful thank you so much.

Virginia

  • Hi Virginia. I had a SCT (my own cells) in September. Before admission I had to have my stem cells harvested. This required giving myself injections to increase stem cell production and then collection of blood. Thankfully when I was admitted I was allowed 2 named visitors. I took in my phone, a tablet (pre loaded with films etc), magazines and books. I was lucky because the Wi-Fi was excellent. There was a tv in the room and a small fridge, a kettle and a daily supply of milk. I took in boiled sweets and ice lollies which help in stopping your mouth get sore during the chemo. Everyone’s experiences are different but I was in hospital for almost a month. I found the chemo and transplant painless. The side effects can be challenging, mine were mainly nausea (which was managed fantastically with I/V medication and diarrhoea, which does not last too long).

    I wish you the best of luck with your treatment and if there is anything else you would like to know please feel free to contact me xx

  • Thank you so much for letting me know. Fantastic detail! Brilliant and so helpful. It's so good to hear that the whole process was manageable. I was a bit worried, because they told me that I will probably end up in ICU. Apparently the chemo Im having is extraordinarily strong. It's called LACE.

    Which chemo did you have, if you don't mind me asking. And what cancer do you have? Are you in remission?

    Virginia x

  • Hi again Virginia  and welcome across to our little corner of the community.

    I have had two Allo (donour) Stem Cell Transplants (SCT) so know this journey rather well and from my point of view...... SCT saved my life.

    No SCT story will be the same, even although they could have the same blood cancer type and be on the same treatment. In my case my two Allo SCTs were completely different. It's a long story so your can use following link to See my story ..... as my story would fill a lot of your thread.

    The conditioning (Treatment) used to 'take down' your immune system just before getting your clean Stem Cells back will be specific to each person's age, type of blood cancer and other health conditions...... I also have asbestosis so this was a consideration that was looked at closely with regards to my conditioning treatments.

    The LACE conditioning is just one of a number of conditionings used pre SCT. I did not have any chemotherapy for my first SCT (June 2013), this was an early trial and although it did not work for me it is now widely used for 'my' type of NHL going through SCT.

    My second SCT conditioning (Oct 2015) had to be very strong (FluMelAlem30) and this included the drug Melphalan...... that's the one that put me into ICU twice....... but your LACE does not have this drug so in some respects your LACE will be less toxic.

    You won't be in a plastic tent..... that was the case 50 years ago when SCT was first done..... yes 50 years!!!

    I was talking with someone last week who had just been through their Auto SCT at 80 years old and were doing great.... so be encouraged.

    As to all the practicalities of the process and what you look to have with you in the SCT unit, the following links taken from the Lymphoma Action website will help.

    Having a stem cell transplant

    Self (autologous) stem cell transplants

    Top tips for stem cell transplants

    There is also an ongoing thread on this group where we have collected other people's thoughts about what worked for them in the SCT Unit Checklist for SCT Unit

    You may also want to consider the Lymphoma Action Buddy Service where you can be linked up with someone who has walked the SCT journey and you can 'talk' with each other.

    You will have lots of questions so ask away ((hugs))

    This is my Simple Guide to an Auto (Autologous) Stem Cell Transplant.

    For an Auto SCT the patient will have to be in a window of remission so that their Stem Cells can be harvested this often requires what is often called salvage treatment.... basically some chemo that can often be strong but is designed to achieve the goal.

    The patient will most likely have a week of injections to make the bone marrow work overtime to produce lots of Stem Cells.

    To harvest the Stem Cells a line is put into the arm. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job by the bone-marrow so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood-stream.

    The machine can pick out millions of stem cells over a 4-5 hours process. The harvest is on the whole painless and once harvested the Stem Cells are frozen.

    Leading up to the actual SCT the patient will have to have treatments to get to a stage where the SCT can proceed.

    So 7ish days leading up to the SCT day he/she will have to go through what is called Conditioning, its a method of taking down the bodies Immune System completely.

    This is normally done again using some very strong chemotherapy and for some like myself, Radiotherapy..... but I had an Allo SCT.

    Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion through a Central Line.

    The Stem Cells then go to the Job-Centre in the Bone-marrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells and the all ’New You’ starts to grow as the body starts to reboot the Immune System and over time the blood counts come back up.

    It's all very clever, very science fiction but all very do-able.

    Each SCT Unit will do their own thing but for an Auto SCT the conditioning can be done as an out-patient then when the patient is get close to get their cells back this is done in a dedicated SCT unit.

    It's a very clean environment (Ward) in a hospital, the patient may even get their own on-suite room. The time in the unit will be different for everyone but expect at least a few weeks - but the medical team will keep the patient well informed.

    Remember the patient does not have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until new immune system kicks back in. The patient will be an in-patient for some of the time but this all depends on how fast the ’New You’ starts to grow. The average is about 4-6 weeks in the unit but can be quicker.

    Once the patient gets discharged they do need to be very careful during the weeks following the SCT as the new Immune System is still growing so care with coming in contact with infectious environments but their team will give lots of guidelines.

    Expect weekly appointments for bloods etc as they will want to keep a close eye on the patient.

    I would also say that the fatigue following a SCT is much higher than going through regular chemo but that could just be me, going off food and some mouth issues do come along but these SCT teams will help as they have seen it all before.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Wow Highlander!!! Thank you so so very much. What fantastic information! That really helps.

    Lots of great links and tips.

    The tips on what to bring was so brilliant. I would never have thought of bringing my own pillow and duvet. Superb tip. The last couple of times I was in hospital one of the things that was the worst was hideous plastic pillows, and awful plastic under sheeting, and incredibly uncomfortable bed. So to bring my own pillows and duvet I think will be amazing.

    What I might do is take two duvets, one for underneath the bottom sheet, so I'm lying on softness, and one for on top of the top sheet.

    When I was in Northwick Park Drake Ward, the room didn't have a fridge or microwave. Nothing except just a bed. They didn't even have any windows or natural light. Like being underground in a bunker. It was pretty awful. But of course the doctors and nurses were amazing and so lovely. 

    I'm hoping I can ask for a room with a fridge, microwave and window. But maybe this is only possible in a private ward. Not sure if the NHS would have these kinds of facilities. I will of course be very grateful for whatever I'm given, because I appreciate the NHS so much, they have saved my life. But I guess there's no harm in asking.

    The links and info that you left contained information that is so useful, that I had no idea about. I didn't realise that the strong chemo was to strip the immune system, but now that I read about it makes sense!

    Anyway thank you very very much for taking the time to leave me such valuable, fascinating information and tips.

    Virginia

  • Good morning Virginia, do call me Mike.

    Yes lots of information in the links but it won't all apply to you so you need to start a note-book with all the questions you need to ask.

    You should be given a Transplant Coordinator as your point of contact so these questions go to them.... get their name and contact details phone/email.

    You can ask about a kettle, microwave, fridge...... I did not, but had access to a communal kitchen where there were little fridges a microwave and a dedicated cupboard where I could store stuff like snacks and my little cafetiere and some good coffee. The idea was that I had to walk!!!! and not be waited on but that all changed during my second SCT as I could not fend for myself.

    My unit has now moved to a new hospital and the folks are now not allowed out of their rooms when their counts are low..... I was able to walk the little corridor and go to the common room at any time

    My unit required me to have a complete change of clothes every day and night...... and my bed was changed every day like clockwork. I had a pillow but nothing else as it was just not possible being 4-5 hrs drive away from home.

    A simple way to think about SCT is like you are getting a hard-drive (bone-marrow) update so your old hard-drive is taken out and a new one is put in with all new software....... with a donor SCT this goes slightly further as my DNA has changed and folks blood types changes to their donors blood type but my brother and I had the same blood type.

    Have a good Sunday and as always no questions is silly ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Virginia, 

    My experience in hospital for my transplant.....

    So I was diagnosed in April 2021 with DLBCL stage 3. I went through 8 rounds of RCHOP and seemed to be responding well and in October 2021 was in remission. 

    I then relapsed in March 2022 and had a cancerous cell mass removed from my small bowel.  

    Because the cancer came back so fast and more aggressively this time, they were sure that it would eventually come back so I was referred to the Haematology department and they then took over my care. 

    Over the next month I had many meetings ,bone aspirations and blood tests etc and eventually a PET scan which was a 3 on the chart which meant they weren’t absolutely 100% sure I was clear or not. 

    As they were so unsure, they decided that the next step would be salvage chemo to prepare me for a stem cell transplant. 

    They wanted to do all this just incase. So wether there was anything to kill, I’ll never know, but it was the safest bet.

    In June I had a port inserted & had a lumber puncture to check if cancer had spread into my spine and then started salvage chemo, I wanna say 3 rounds (was all a bit all over the place because after my first round I had a bad reaction to the cisplatin in the chemo) I ended up in ICU with chemo complications, my kidneys almost failed and also had covid. 

    One of the worst times EVER!! BUT TEMPORARY !!

    Once I recovered from that I had another PET scan which came back clear, although I still had to go ahead with treatment just in case there was something microscopic that wasn’t detected in the scan. So one more salvage chemo round. 

    In August I went into hospital for my stem cell harvest. Now because my arm and hand veins were so messed up from all the chemo in 2021, they weren’t able to harvest my cells the usual way. So they had to insert a femoral line into my inner thigh. 

    At first they said they’d do it whilst I was awake and inject me to numb the area. This didn’t go too well as I started to feel it and it was so unbelievably painful, I eventually made them put me under.

    So a few hours later I woke up with this line in my thigh which ached a bit but that didn’t last long and it was fine. 

    Hopefully you’ll be able to get it done the normal way, but just warning you as I wasn’t aware that this would be the case and it wasn’t great.

    I had 2 days of harvesting as they didn’t get enough cells the first day but this was pain free and I think I slept through most of it. 

    They then removed my femoral line which was incredibly painful as no pain relief or numbing. They literally yanked it out and then compressed my wound so I couldn’t bleed out. Again NOT fun at all- very sore but its very quick and the pain is temporary. 

    Ok so then I had about 12 days off at home to relax and had a meeting with my transplant team to hear how things were gonna be.

    I had to prepare a lot mentally and physically before going in and get my packing sorted (I was told its usually 3 weeks in hospital but to expect 4 weeks, so that I didn’t get upset if I had to stay longer).

    A list of things I took with me : 

    • food ( now you’re only allowed canned goods, individually packed snacks and drinks) there was a mini fridge in my room. You can’t take anything in fresh as it can carry bacteria and the transplant unit is a germ free space. 
    • I took things like : cookies, juice boxes, canned soup (great for when you get bored of hospital food or mouth hurts from mucocitis) and instant noodles. Sour sweets (these usually help with my nausea) 
    • All my clothes and extra bedding had to be washed and brought in unused (to prevent bacteria entering my room) 
    • I literally lived in leggings, and big t-shirts and slippers. 
    • Unscented body wash (the smell of scented ones would always make me nauseas).
    • Colouring books, sketch pad, downloaded Netflix movies, podcasts, word puzzles. These were used in the first week when I had intense chemo but I got fuzzy eyes from chemo which eventually made it hard to read/watch tv or draw properly.
    • Extra loo roll and flushable wet wipes (as hospital loo troll is thin and not soft) - helps when or if you get diarrhoea.

    Preparing physically I had to make sure I was as fit as I could be. You spend a month not being too active (although in the first week of chemo I walked the corridors a bit and used the in room cycle machine). That didn’t last long as I got an infection and was then confined to my room for the rest of my stay, so I didn’t infect any other patient.

    We were all separated and so you don’t interact with anyone except the nurses, doctors and visitors (i was allowed 2 guests per day, who had to wear full scrubs and masks) 

    Mentally, Im not sure I knew what was coming so that was hard to prepare for. I just knew I had to try and be positive as much as possible. 

    This became increasingly difficult as the time went on. Being isolated in a room for a month is so hard. 

    Ok so the first week was hardcore chemo (i can’t remember what it was called but it was way more intense that RCHOP!!)

    Symptoms : diarrhoea, nausea (minimal vomitting) 

    The day of transplant was the easiest day (day 0) . The nurses all came in and my boyfriend was with and my parents on video call. 

    They said a prayer and then started pumping my stem cells back into me, through my port- this took a few hours and I was just sleepy but no pain at all. 

    Then the hard part starts…..

    I got mucocitis which usually happens to various degrees but mine was the usual- although I found it so awful. Your mouth starts to hurt, swallowing and eating and drinking become impossible. My mouth was filled with thick sticky saliva that I either had to spit out every minute or scrape out with a tissue ( I literally went through a box of tissues a day). 

    My tongue started to peel and the back of my throat. Its absolutely horrendous and I didn’t know it would be that bad ( I expected ulcers but this was on another level) 

    I don’t want to scare you and this may not happen to you but I want to be honest and prepare you. 

    Because I couldn’t eat or drink I was fed through my port (the nasal tube didn’t fit my nose). I was encouraged to drink these weird milkshake and juice drinks which were only tolerable with a lot of ice. But I didn’t do too well with those. I also had to use mouth washes to try and keep my mouth as clean as possible. 

    Showering became such a chore. I had zero energy so some days I couldn't even do it. 

    I had nausea and diarrhoea and because of the mouth pain and isolation I became very upset and cried a lot. I also had a bad cough (scans showed no major issues but it lasted for about 3 weeks). 

    You're also attached to your drip stand 24 hrs a day for a month - so that's hard when moving around the room and to and from the bathroom. 

    They do give pain relief which definitely helped. 

    I couldn’t see the light at the end of the tunnel so for about a week and a half after transplant I was mentally in a dark place. 

    Slowly things start to get better I PROMISE) . It so hard to see it but it does. 

    I left only on day 15 after transplant (so a total of 23 days in that room I think) . I was only allowed to leave once I started eating myself and had no temperature . 

    Oh yes and they also check temp, and blood pressure all the time -interrupted my sleep a lot. I would try sleep as much of the day as possible so I wasn't awake to feel all the feelings. 

    Because I was in such a state all the Netflix and books etc I took weren’t used much as I just couldn’t concentrate at all. 

    The first few weeks at home were tough , still coughing and lots of phlegm, no taste so eating was a real chore. I could barely do anything without being out of breathe and everything took longer and a lot of resting after each little activity, I even had to rest for at least 10 minutes after showering (that was very tough). Be prepared to be totally exhausted!!!!

    Im slowly getting my energy back, the taste buds came back after a few weeks and I’m still on the special diet (its like a pregnant woman diet - no raw foods and other things which they’ll tell you about). 

    I am now socialising in small groups and can finally enjoy a nice glass of wine here and there.

    I have my PET scan next week , to see if I’m all clear and then in December I'll hit 100days and my immune system will be normal again. Its still going to be a while before I feel back to my normal self and hopefully Il have my port removed before Christmas and then all my immunisations again (they are wiped out after a transplant) in January. 

    I know all I’ve said is scary sounding and you may not have any or only a few of my experiences but its better to be aware of what could happen so you can prepare yourself. 

    If you have any other questions then please ask. 

    I wish you so much luck and strength through the next few months. 

    Just remember in your darkest hours ..... it can be done and you WILL get through it. Im proof! 

    Im now 4 months post transplant and feel great!

    All the best,

    Klip 

  • Hi Klip,

    I'm so happy to hear that you feel great now at only 4 months after the transplant. That is so brilliant, congratulations and all the best for the future you must let me know what happens.

    Thank you so very much for sharing that adventure. I found it so incredibly useful.

    There are so many parallels to what's happening to me. Yours is the closest account that I've read so far. I've been desperate to try to find someone who is going through the same set of circumstances as me.

    They fear that my cancer has also come back after remission, I went through r-chop for six cycles, was in a supposed remission, and now only 2 months later the orthopaedic consultant said he found cancer back in my right Tibea.

    Just after the 5th cycle they told me that I had a gene protein CD5 positive, which indicates that my cancer is incredibly aggressive, vicious and hides. Like yours.

    I'm stage 4 so there's not much hope for me, plus I'm 70, a very very youthful young cool 70, but nevertheless the news is as I have 19 months to live and the stem cell transplant could possibly give me another 4-5 years only

    Really vile news that I'm finding difficult to process. I found that the cancer nurses and doctors are so used to death and dying that they don't react or and don't offer any counselling or help whatsoever, they just drop the bomb and carry on talking. To this day there's not one atom of empathy or concern about what I might or might not be feeling. I'm expected to just take the news, process it and carry on as though nothing has happened.

    I was so shocked when I heard, because I was initially told at Northwick Park when I was there for my first cycle of chemo that Non Hodgkin Lymphoma DLBCL is extremely treatable and that they were confident that there could be a cure for me. And I had the impression based on their reactions that my cancer was pretty harmless. Apparently they had the information that I was CD5 positive at that time, but didn't share with me and didn't seem to even register it. The only conclusion I can come to is it they wanted me to be as positive as possible through the chemotherapy which I suppose makes sense.

    When I was eventually told by Hammersmith Hospital about the CD5 positive, I didn't react at all. I didn't know what to say. One of the doctor's actually said to me "Well you have to die of something" .. very matter-of-fact!

    It seemed to just sit somewhere above me. It actually took about 5 weeks to dawn on me that I was really affected subconsciously, and that was when I had to go into hospital after my 6th chemo because I just fell bits physically with side effects. And I think it was because I lost my positivity.

    I started to slide down hill emotionally. I was no longer able to exist on on a power pack of positivity, and privately in my home, felt very teary and depressed and confused. I mean, the news that you're going to die within two years is pretty horrendous. You start thinking about all of your belongings, and what on earth is going to happen to them, who to give them to etc etc. You start to wonder about the who actually really does care about you, and who doesn't give a damn. And you start noticing lovely things on TV and in films that depress you, because you will never have a chance to do those things again.

    I asked my lovely Macmillan support worker if she could arrange some talk therapy, and she ended up instructing me to ask my nurse consultant to refer me to the psychology department that's attached to Hammersmith Oncology. My nurse consultant didn't think I needed that, I suppose the reality is that I guess she believed I must be such a positive person that I couldn't possibly be affected by the news of my pending death, and so told me to contact Maggie's for some talk therapy.

    Which I did, I had a phone call with one of the psychologists, who was even more cold and snapped that we should all realise that we are not immortal.. (what?????)... I told her I just wanted to process the information, and she said "What does wanting to process it mean" ... I just said that I wanted to work out a way to deal with the information. I was so disgusted by her attitude I said to her "How would you feel if you found out that you were going to die within 2 years.." needless to say I was very relieved when she told me that she didn't have any appointments for the next few months. I told her that I needed to talk to somebody before I had the stem cell transplant because I didn't want to go in feeling low and negative.

    She told me she didn't have an appointment in the next few months and so to ask my nurse consultant at Hammersmith Hospital to refer me to the psychology department.
    Which I had already done previously. Never mind. I went in a big circle. Anyway, now I have an appointment to see them this coming Friday 10th Feb 2023

    I just find it absolutely extraordinary that when medical professionals have to tell you that you are going to die that they don't offer you some kind of empathy or support or counselling at that very second. But they don't. They just tell you as though they are giving you a shopping list. Absolutely no feelings, and no counselling offered, no word of comfort, nothing. You feel like just another wheel in and endless cog. There are probably another 20 people in the waiting room outside to hear the exact same news.

    I live alone and I am alone, and I think that people who are married or have partners will receive that news and comfort each other at home, and then possibly family will be called upon to comfort and give direction. But there is certainly no word of comfort or counseling or help from the hospital at the time when the nasty news is given.

    I have gone from being a really super upbeat totally positive energetic person through chemo, to now being negative and low in mood and confused. And I really don't want to go into the transplant like that. If you meet me you will think I'm very positive, but that's not to say that under the surface I'm not sad.

    The two PET scans I've had so far have not ruled out the existence of cancer. The PET scans don't seem to be able to tell the difference between cancer and fast dividing healing good cells. They have presumed that the activity on the two PET scans, one halfway and one post chemo, was fast dividing healing cells, but the orthopaedic consultant last week said that there has been no healing whatsoever in my bone in the last 2 months and the activity in my Tibea is the cancer back!

    Thank you very much for telling me about your experiences of the SCT, its so vital that I hear other people's experiences and really detailed reports about what happened. I know that not everything will happen to me personally, but you never know it might, so its good for me to be prepared.

    I have experienced the pain of not being able to swallow or eat or drink, and the mouth ulcers and diarrhoea with my 6th chemo, the one I was hospitalised for, and I have read that the SCT conditioning chemo is so much more powerful, and that my symptoms will be much greater. So I found it very helpful that you went into detail about what happened to you. I'm a very detail-oriented person so I rely on detailed accounts to inform me.

    Thank you for going into detail about the fatigue at home as well. Something I needed to know.

    I do worry about my leg. Currently the bone is trying to heal but has stalled. In the last 9 months the big cancer destruction gap in the bone has miraculously joined, and now after 6 months in casts, some thigh-high, I'm now able to put some weight on the leg. I can't walk but I'm slowly starting to use crutches. I worry that this will all go backwards when I'm in hospital.

    After the SCT I would at least like to be able to heal enough to be able to walk again, and be able to leave my home, and recover enough to at least have some small period of independence in the time left.

    Back to the SCT. My SCT consultant had told me that what she will do is to pop the nasal feeding tube in before I start the treatment so that its in place should we need it. I'm hoping it won't be needed, but it wouldn't surprise me.

    I have bought a new duvet to take in with me, it's still in its plastic packaging, and I've bought two new pillows, also still in their plastic packaging, and I will take those in as well. I forgot to buy another duvet to use on top of the mattress so I will buy another one before I go in.

    I bought a little second-hand iPad and loaded prime video and Netflix onto it, but I do remember all the times I had chemo, just like you, my eyesight was blurry and the last thing I felt like doing was watching anything or reading anything.

    So I'm not going to bring any books with me. I had considered audio books but the few I have tried here at home I found annoying because I couldn't stand the voice of the person reading. I shall try a few more audiobooks and see if I can find some that are easy to listen to and get those ready.

    It's good to know that I can't bring any food that's not tinned or packaged. A kind person who went through SCT recommended those little individually packaged cheeses to have on hand, and Sprite.

    Tell me, when you could tolerate snacks, what other snacks did you find useful? Could you also tolerate any sweets or hard candy?

    Great to know about the canned soup, I will definitely do that. I wonder if there will be a microwave in the room. I don't know how easy it would be to ask a nurse to heat up some soup. I know in Northwick Park the nurses were so busy that it was very difficult if not impossible to even get a cup of tea.

    What I'm going to do is to take in a little one cup kettle that I bought on Amazon, I don't think I could put the soup in there, although something perhaps I could try, but certainly will work for water for tea.

    Re milk of some description? I don't know, will they allow me to have a bottle of milk or soy milk in the fridge? Or will I have to take in individual little packets?

    I thought that having a little kettle and some milk and honey there I could make myself cups of tea. I do realise that there will be lots of times where I just won't feel like doing anything at all.

    Thanks for the headsup on the drip. I became quite good at directing a drip stand into the bathroom in my wheelchair the last time I was in hospital.

    I love the idea of prayers before the stem cells go back in. Please say some prayers for me anyone who's reading this. I'm a great believer in the power of them. There will be no one there to say prayers with me, except the nurses if they will do so, so I appreciate your prayers.

    I'm glad to hear that you can have 2 visitors each day, but I am alone, so there won't be anyone to see me each day, however I know that a gay friend of mine, Charlie, and his husband, will probably come and see me once a week or two weeks. And possibly another friend might come once a week. I'm used to being alone so so it doesn't bother me too much. But I must admit to you, times like these I really really wish I had a partner in life. A lovely boyfriend or husband I could learn on. Oh well.

    So I was meant to have my transplant this month sometime, Feb, but because the orthopaedic consultant thinks he found cancer, my Haematologist is doing another PET scan and an MRI. And then based on the findings they will either give me another chemo, or go straight into the transplant in March now.

    I've been incredibly worried about who on earth will look after my beautiful beloved cat will I'm away. I was looking at all kinds of pets sitter companies, and even international house sit companies where people coming from overseas stay in your home for free in return for feeding your pet. (Brilliant idea actually, saves them a fortune in hotels and B&Bs) That was an option I considered. But thankfully my neighbour upstairs has agreed to to come down and feed my cat twice a day, and even take him upstairs every day for a few hours. So hopefully he won't be too upset. The last time he was absolutely devastated. My cat and I are very close

    So I'm ready and just waiting. I have my PET scan and MRI coming up in the next few weeks, so I shall let you know when I'm going in.

    Thank you all for tolerating me speaking my mind here. I find that people don't really want to hear any of these things outside of this community. When someone says "How are you feeling?" unless it is extremely close family or partner, they don't really want to know I've discovered. So I just fein positivity and brightness and keep it all to myself. So thank you very much for listening to my true thoughts here.

  • Hi Virginia,

    I'm just back on here after a while away whilst my dad regained remission from his AML and got back on the transplant schedule. My dad is 70 too and on his own, so when he was first discharged from hospital he came to live with me. 

    It's been a roller coaster 14 months and I totally get and agree that the psychological effects are sometimes harder to cope with than the physical stuff -  for me as a caregiver, that's absolutely the case and that's why I have counselling privately to help me. Dad sees me as his counsellour/life coach/PA/walking partner - he does go for reiki which really helps him :)

    We're big cat fans too - dad has two and I have one. Maybe take some pics of your cat to have in your room? And get your neighbour to send you pics and videos. I'm going to do that for dad. 

    We've just found out that he's having his Hickman port put in on Friday with an admission for transplant of Monday! It's hard to prepare for, but at the end of the day, we'll just crack on and give it everything! 

    Sending warm best wishes!

  • Dear Jaheen,

    Thank you for your lovely message. Please give my love to your dad, I hope all goes well. You're such a lovely daughter being his carer, Bless you xx

  • Morning Virginia, 

    Thanks so much for your email, and your positive wishes for me. Its actually great to chat this all through with someone who is having a similar experience. 

    Its like my therapy (I will be seeking professional help soon, as I think it is so important to chat these experiences through. I certainly don't want to bottle it all up and one day it comes back to bite me). I would advise everyone to do so. Hopefully I will find people a little more caring than you did. Which by the way really saddens me that that was your first experience. Forget those people and hopefully next time you'll find someone great!! 

    Anyway moving on ..... Greetings from sunny Cape Town. I should mention that I live here (Im British/South African, & moved back here 4 yrs ago). So I have had all my treatment here. 

    I wanted to mention this , because Im unsure what it's like to be in a UK hospital for treatment. When I did my SCT I was in a hospital that had a very isolated SCT unit.

    This meant that it was a very clean & sterile environment. The nurses /doctors/ nutritionists were the only people I interacted with (except when I had visitors) and they were on hand to help 24/7. So when you mentioned your nurses may be too busy to even get you a cuppa, I was surprised. Hopefully you will have a dedicated team on hand to help you, like I did. I never felt bad asking for them to heat up soup or get me a cup of tea. It was there job, as I couldn't leave my room. 

    Also re food in your mini fridge- I was told only individual sized portions (this is so once its opened, it can be consumed straight away). Anything opened and not finished had to be binned incase it got bacteria in it. 

    I could have nothing raw (including honey and any kind of nut - even roasted). I also couldn't have homemade food or packaged food like supermarket fresh snacks or sandwiches. They were super strict.

    I reckon you could take individual milk sachets but I would highly advise asking your team for exactly what you can and can't take in. The kettle is a great idea, I thought of that, but eventually I wasn't taking anything my mouth (except a bit of water) so didn't need it anyway. But def something to take if you want. 

    In terms of snacks, I couldn't manage much in the week immediately after transplant, as I had severe mucositis which is way more intense than ulcers (I've heard), so I could sometimes manage orange ice lollies that they kept in the nurses kitchen for me, which is also where the microwave was. They also made me drink fortijuice and vanilla fortisip (only just tolerable with lots of crushed ice). It would sometimes take me all day to drink just one 125ml bottle. I struggled a lot. 

    During the intense chemo, beforehand, sour chewy sweets helped my nausea ALOT. I recall eating some popcorn in the early days and salt & vinegar crisps. I had a real issue with textures too. Some things just didn't feel great. You'll soon learn what works and what doesn't. I tried to eat the hospital food, but I had a problem with food smells too, everything made me feel more nauseous.

    Eventually they tried to put a nasal tube in me (turns out my nasal passage is smaller than a childs, so none of them fit). This is when they started feeding me through my port. 

    If you can do the nasal tube it is so much better in terms of recovery. You'll get more nutrients which in turn will make you stronger and hopefully mean you can leave sooner. I guess you'll have to see what works for you. 

    I think audiobooks are a good alternative if your eyes go fuzzy again, and also podcasts- there are so many great ones. I do remember though that at times I was so nauseous and tired and weak that I sometimes laid for hours in silence, as everything was just too much.

    I tried to sleep a lot so I wasn't crying. I don't want to freak you out but it becomes very strange being confined to a room alone for so long and it gives you a lot of time to be negative. I unfortunately was, for about a week and so sleeping was my escape. I can't really describe it, but I felt like I wanted to climb the walls and felt stir crazy. I soon got myself out of that funk but it may happen- so be prepared to endure that mind space. 

    Hopefully you're friend Charlie will be able to visit, because although on some days I didn't feel like seeing anyone or being social, to know that someone was coming, helped me navigate my day and I felt like- if I can do 5 hrs alone then 1 hr with someone, it helped me then do the next 5 -6 hrs alone. Does that make sense? 

    Anyway I've probably rambled too much now, but just thought id be honest and share more of how it felt for me. 

    Hopefully your inner positive person will come out more than mine did or at least faster than mine did( Im literally described by all who know me as the most positive of us all). So the negativity was unfamiliar territory, which I wasn't prepared to handle. 

    For me it was more of a mental battle than physical. Don't get me wrong, the physical side effects were awful but the mind becomes very overwhelmed by it all.

    You must try and focus on the end goal and know that you will get through it and hopefully be like me who is now having a great time getting back to my normal self. 

    I have my first appointment with my doctor on March 1st. (6 months since transplant) So fingers crossed Im all still fine. 

    Chat whenever you want (I'm away for next few days but will reply asap). 

    Have a brilliant day! 

    Klip x