Diagnosed with NHL December 2018

I was diagnosed with High Grade NHL late December 2018 and was admitted to hospital on the 27th December for my first Chemo treatment my consultant wanted my treatment start ASAP due to it transforming from and spreading my stomach to my chest
I have since had 6 sessions of rituximab after 3 sessions I was given a scan that showed that the tumours were reducing, after my 6th session I had a PET scan that showed partial remission.
I am now on maintinence treatment of 8 weekly visits for an injection into my stomach this will will last for the next two years.
I will never be rid of this cancer but fell so lucky that my treatment has gone as well as could be expected and am able to live an active life again, I consider myself much luckier than a lot of other cancer suffers
The Chemo treatment was quite tough but better than I expected I had the usual hair loss (although it’s grown back now) I also had problems with taste and a very sore mouth, and my toe nails are still recovering, fatigue was a big problem and I still get tired but it’s getting better
Now with this COVID-19 I am having to stay at home for the forseeable future and just hope the goverment don’t make the mistake of releasing the lock down too soon, they did make the mistake of introducing the lock down to late IMHO
Releasing the lock down too soon would be far worse as a second spike would cost many more lives and keep people at home far longer.
I am quite happy at home I get good support from the supermarkets for my shopping and find plenty to do, my garden has never looked so good this early in March, and a fresh lick of paint around the house one odf the chores I kept putting off but now find it really good to concentrate the mind, there really is plenty to keep me entertained at home, the only big thing I miss is my children and grandchildren but we talk and Skype often
Thank God for the NHS and my cancer team who have been wonderful and I hope they are not forgotten when all this is over

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Welcome to the forum @BedrockFred. I am pleased to read that you are doing well. Like many of us you are worried about the lockdown being eased too soon and, like you, I am missing my children and grandchildren. We what’s app regularly, and my two older grandchildren are going to video call later today.
I hope you find topics on the forum to interest you, and you may have insights to share
Stay home and stay safe. Best wishes

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Hi @BedrockFred, a very warm welcome to our forum and I am really impressed with your gardening and painting efforts. I was expecting to have all this time on my hands during isolation, but somehow that has not materialised. However I have, I think, got to grips with some modern technology and that has taken many hours I have to say.
I also think the same as you and @Pisces56 that I have realised just how important social interaction with family and friends is, it is priceless.
I am also concerned, as you both and many others on this forum are, about easing the lockdown too early and think I will see how things pan out first. I look forward to hearing more from you, I hope we will all support each other through this.

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@BedrockFred wishing you a very warm welcome! I hope you are doing okay? It’s so encouraging to hear you have felt supported by your treatment team, I can only imagine what a difference this makes. As you say, @BedrockFred, it’s so understandable to feel concerned about what will happen with the lockdown going forward. How has it been for you, trying to keep in touch with your children and grandchildren?

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Hi @BedrockFred. I have had the same blood cancer as you - all the same side effects- what is it with the toenails?! I had to have my two big toe ones removed. Then you worry about infections and people do not realise all the weird problems that chemo causes. But it will pass. You might not think it now, but one day you will look back, and although you will know it was bad, you won’t remember just how bad it was. Like childbirth! I didn’t think I would cope with the lockdown but I have settled right into it. In fact I’m a little anxious to go out at all now. I am also missing my family, but we will all be together again soon. Just think how lucky we are that we weren’t taken out by this hideous disease, never to see our families again. That is a thought that keeps me going. I wish you well and hope you are having a good day today

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Hi @Lulu, how are you? it’s so understandable to be missing your family during this period, but also so encouraging to hear you are keeping safe. Thank you so much for sharing your experience of side effects, it does sound like you went through a lot Lulu. How are things now?

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Hi @SuBloodcancerUK I am not too bad actually, thank you. I have recently been diagnosed with Organising Pneumonia but treatment has been halted due to Covid 19. I feel like it’s a running joke, and that I’ve ALWAYS got something wrong with me! But I actually have, lol. I had a telephone consultation on Thursday and I feel like I’m the mystery shopper. I throw a few symptoms and niggles at my Consultant, and I’m like “work that out”! I’m lucky that we have a great relationship and he says that when I tell him I’m not right, I always am definitely not. You get to know your own body don’t you? I would always encourage people to never question their judgement, even though it might seem trivial, and to keep asking questions and say what you truly feel

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Hi @Lulu, you are right if you do not tell your GP/consultant/nurse every symptom, thought and feeling how can you expect them to make a accurate diagnosis. Please keep letting us know how you are.

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Thanks for all the kind replies, I’m doing fine and coping with the lock down really well getting lots of those jobs done you keep saying I must do!!
Having a great NHS team supporting me has been great, I really hope they are not forgotten when this is over, they do a great job every single day of every single year and deserve to be treated better, hopefully now lessons have been learned of who is really important
Just hope that things stay in lockdown for a while yet, like Lulu I am a little concerned about going out

Good luck everybody, stay safe

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Such good advice @Lulu thank you so much for sharing that!

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So good to hear you have a great NHS team @BedrockFred and that you have such a good relationship with your consultant @Lulu :slight_smile: Glad you’re both doing okay at the moment!

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Hi, It’s good to learn of your successful treatment, I too had the same diagnosis last November but not so fortunate,so far!
I had no ill-effects after my first session of chemo (R-Chop), but was sick after my second session in December 2019, this sickness has continued so I am living on strained soups, custard, semolina,bovril,ensure and baby food (a good tip for those suffering with sickness).
Despite my, ‘care team’ being aware of this and my continuing weight loss they have only provided me with dalperidone, (anti-sickness) since day one. Alhough my,’ cancer nurse’ said she’d get it changed, I was provided with another pack of domperidone, I questioned this and was simply told, “well I don’t know what to suggest apart from trying Gaviscon before a meal”.
At the start of my, ‘cancer journey’, I was provided with literature which spoke highly of my, ‘support team’, yet I have never felt so unsupported in my life both by heamatologist and Macmillan cancer nurse, latest example is sending an email to my heamatologist on 30th March, I have not received a response and it’s now the 14th of May … I did phone the hospital last week to check if they had receivved my email and they had!
I did however get notified re. a pet ct scan, (different dept.), for 14th April but as this required a 160 mile round trip, (public transport or car share), and I’d been told to self isolate up until June, I phoned and asked for guidance and was told they’d postpone it.
I am over 70 my weight down from 48 kg at start of treatment to now 40 kg (6st. 4lbs). I was having daily injections administerd by local district nurses who expressed concern at my weight loss, one insisting that I make an appt. with a G.P., this I did and have been supplied with 6 different anti-sickness pills all to no effect, today I start on peppermint water. I am due a gastroscopy sometime, though no word when yet, I queeried this only to be told they are only doing emergencies meantime because of covid, which is understandable with the close contact involved.
To sum up I’ve not had a, ‘proper meal’ since December and feel totally let down by my so called, ‘cancer team’. (Moan over!!)
As I said at the outset glad your story is one of success, well done you!!

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@Peem It sounds like you have been through so much, and I’m so sorry to hear of the impact it has had on your eating. Some hospitals have a chemotherapy helpline people can call for support, of course, different hospitals can operate differently- but i’m wondering if you’re aware of anything like this where you are being treated? It might also be an idea to get in touch with your GP and explore whether they could refer you to an additional specialist such as a dietitian, who may able to offer additional help re the challenges you are facing with eating?

Once again, Peem, I’m so sorry that you are feeling like this, but please do keep using the forum as a safe space to talk through anything on your mind.

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I am sorry to hear that you are struggling in so many ways. Have you tried nibbling crystallized ginger to help with nausea and sickness (or ginger tea)?

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Oh, @Peem, it sounds as if you really have been going through a horrid time this year and it must be very isolating and lonely for you to feel so unsupported at a time when you are isolating as well. I know I feel my emotions are really fluctuating during isolating. I have realised how important social interaction and contact is to me. However it has made me come into the 21st century with technology and I have also used the telephone, emails and texts a lot, I have even written to a couple of friends. Do you have any people and support you can interact with? I realise this might not be easy for you with your sickness and sore throat. Please don’t apologise for feeling you are moaning. This forum is here for us to be able to share what is really going on for us. Perhaps we need it more with Covid-19 and we are here to support each other. Please keep posting.

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Thanks for all the replies and kind words, so sorry to read of Peems problems

I have not been out since the begining of March and have no intention of going out just yet, other than for my treatment, I have absolutley no confidence in this government and their advice, I am at the hospital on Tuesday for my next treatment so will ask their advice as I feel the government are releasing the lockdown for economical reasons, that and to move things on from what Cummings did
Stay safe

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Hi @BedrockFred, great to hear from you, please let us know how your hospital experience is and the advice you are given Yes, stay safe.

@BedrockFred I imagine it’s really hard to feel such a lack of confidence in the government advice around something so important to you. Really glad to hear you’re going to chat to your treatment team about your concerns. I hope your next treatment goes as well as it can for you… do keep in touch and let us know how you’re getting on.

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Treatment done yesterday Hospital very safe lots of checks before you are allowed in temp taken etc

All went as planned and they have decieded now to take my bloods at home and just go to the day unit for treatment

Consultant worried that the lockdown is being released to fast and the protest BLM all over the country will lead to a spike so wants to safe rather than sorry

He will also do a telephone consulation a week before treatment to check I am OK to continue and the bloods will be done before that

Stay Safe

Together we are stronger

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So pleased that treatment is going ahead in a safe environment, and blood tests at home saves on trips out. Stay safe, and stay smiling

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